Myalgic encephalomyelitis (ME) : science, quackery & mental illness
The militant wing of the Myalgic Encephalomyelitis (ME) brigade broke out the champagne when a recent article in Science reported that a retrovirus had been found in 67% of ME patients compared to under 4% of the general population. Sadly, the study only involved just over 100 patients and is thus inconclusive...
The Guardian, Tuesday 20 October 2009
Labels: Guardian, mental illness, myalgic encephalomyelitis, quackery
124 Comments:
Baiting M.E. sufferers is quite a favourite sport of yours, isn't it, doctor?
It's hardly the patients' fault if for 25 years members of the psychiatric profession who work for health insurance companies have deliberately muddled patients with this horrible neurological illness up with those with depression, in order that the insurance companies do no have to pay out compensation.
As no UK taxpayers' money has ever gone into biomedical research (surprise, surprise, it's all gone to psychiatrists!) there is no diagnostic test, and many doctors therefore somehow feel justified in denigrating sufferers. Some of the doctors, mentioning no pseudonyms, seem to actually enjoy it.
Cancer and AIDS are not treated solely by psychological intervention, and neither should M.E. be.
Without medical research all illness would still be seen as caused by demonic possession.
Do be careful what you are criticising doctor; the xmrv virus is not only being implicated in M.E. and an aggressive form of prostate cancer, it is also being queried as present in autistic people.
“My hypothesis was, ‘This is a retrovirus,’ and I was going to use that repository to find it,” Dr. Mikovits told me.
What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.
“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough.
Hillary Johnson is the author of “Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.”
"Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS:
“My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research.
“Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”"
But, anonymous, the ME militants say that CFS is nothing to do with ME. And of course the Americans dont recognise ME at all.
So is CFS a separate disease?
John
"Sadly, the study only involved just over 100 patients and is thus inconclusive."
Did the paper not carry out tests for statistical significance? If the result was found not to be significant, it's appalling that newspaper reports don't mention that.
"When you have filtered out the malingerers and the mentally ill"
It seems to me unfortunate that you conflate these two groups. The emphasis on "mentally ill" should be very much on the word ill.
Just read your article and you've made a number of fair points. You describe many problems but no possible solutions. Hasn't it occured to you that many 'militant' ME patients are complaining (albeit in a very different way) about exactly the same thing as you are? Namely, the issue of CFS being so loosely classified as to become a catch all, dustbin diagnosis containing a hotch botch mix of people with various illnesses; some entirely mental, some entirely physical and some a combination of both. As others have said, I have good reason to believe the illness is deliberately being defined in a very vague manner due to the influence of certain vested interest groups.
If the findings about this retrovirus have the potential to lead to diagnostic tests (I agree further larger studies would need to be done to bring that about) that can help sort through this mess- wouldn't that be a win win situation all round for both Drs and patients who'll have a better idea of what they're fighting against?
Neelu
PS: Yes, ME and CFS are two different diagnoses but several Drs use the two terms interchangably and in the US the CDC does not appear to acknowledge 'ME' at all so both conditions are called 'CFS' over there.
I am just an ordinary little nurse who enjoys learning and therefore research. I have researched ME/CFS in the past and interestingly or perhaps wrongly, have filed it in the mental health section. This is perhaps because anxiety, depression or Lyme disease are offered as a differential diagnosis.
I have never met or known anyone with this condition so cannot really make a judgement.
Prof. J. Newton, Newcastle University and RVI, Newcastle has found autonomic dysfunction is prevelent in CFS/ME. Just type in CFS/POTS and all shall be revealed. This is a highly regarded lady and I do not feel she would jump on any old bandwagon. No! She is not my mother!
Whether it is a true disease entity or somatic manifestations of mental ill health, I do not feel your vitreolic rantings are helpful...
...but I do so enjoy reading them as I love debate.
How very interesting that you seem far more interested in 'the militant ME brigade' than you are in the actual article. This is your focus. Nevermind stuff like this
http://www.cancer.gov/newscenter/pressreleases/CFSxmrv
Hell, you could've poked around ScienceBlogs if you wanted to get a read on skeptics doing what they could to debunk this study.
Actually, maybe you did.
It's okay. The actual study--not worth commenting much on. The 'militant ME brigade'--now there's something that's deserving of column inches!
Well done!
Your invisibility cloak is slipping again, Dr F.
Shame for your M.E. patients that there's no wizard underneath, but just the usual ill-informed bigot.
YAWN!!!!!
Baiting and denigrating M.E. sufferers is so OVER.
So why don't you trot off and find something better to do - like perhaps even heal the sick (not your 'undeserving' M.E. patients of course , you couldn't even if you wanted to - there's no effective treatment)?
Fellow M.E. sufferers, instead of wasting any more time here, why not go to the M.E. Research UK, the M.E.A.'s Ramsay Research Foundation or the WPI's website and donate what you can afford to their XMRV research?
Biomedical research will eventually put a stop to the abuse and neglect we receive from the medical profession. The Medical Research Council and AfME only fund psychological research so biased that all it does is fuel misunderstanding.
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Neelu: "I have good reason to believe the illness is deliberately being defined in a very vague manner due to the influence of certain vested interest groups."
Dare I attempt to return to previous discussions on this subject on this once fine blog, but I seem to recall an 'ME militant' posting a link to a little book that contained a list of over 60 symptoms that were used to diagnose ME. I therefore can only presume you are making a reference to the ME groups themselves. They are the only ones I can think of when you mention vested interests & vague manners.
Well if the Canadian Guidelines had been adopted instead of the worse than useless Oxford Criteria we're stuck with in the UK, the mad, bad and dangerous would not actually be lumped in with the genuine CFS/ME cases and then maybe we could move forward, get the research done, go some way to a cure and finally be well enough to get back to work.
I guess this is why it's possible there could be a militant wing in the first place.
Well said anonymous.
In contrast to Dr Crippen's muddled article in the Guardian, which adds nothing to the understanding of xmrv, Hillary Johnson had this astute article published in the NY Times:
Op-Ed Contributor NY Times
A Case for Chronic Denial
By HILLARY JOHNSON
EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?
XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).
That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.
The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”
When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.
An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”
Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.
.......
Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.
Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: “My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. “Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”
Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.
As public health officials focused on psychiatric explanations, the virus apparently spread widely. In the new study, active XMRV infections were found in 3.7 percent of the healthy controls tested. Roughly the same degree of infection in healthy people has been found in the prostate research. If this is representative of the United States as a whole, then as many as 10 million Americans may carry the retrovirus.
It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome — in the same way that not all of the 1.1 million Americans infected with H.I.V. will get AIDS.)
Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the beginning. In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers’ blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitas’s findings.
That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.
cont.....Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who led the recent study, has revisited the cold case. Not surprisingly, the institute is private, created by the parents of a woman who suffers from chronic fatigue syndrome. But Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic.
.......
cont....
When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer Institute, knew little about chronic fatigue syndrome. But she was intrigued that an unusually high number of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias; at least one had died. And she was also impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 chronic fatigue syndrome tissue samples going back as far as 1984.
“My hypothesis was, ‘This is a retrovirus,’ and I was going to use that repository to find it,” Dr. Mikovits told me.
What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.
“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.
For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough.
Hillary Johnson is the author of “Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.”
Hillary Johnson's new comment on her blog:
" WHAT HAPPENED TO YOUR DISABILITY INSURER'S STOCK ON TUESDAY?
For all those whose lives have been turned into living hell by their disability insurers; who have been "pauperized" by legal and medical costs as a result of fighting losing battles with disability insurers; who lost their health, then lost their house, trying to win disability benefits; who have felt their footing in life slipping away while their disability insurer waged war on them--take heart.
Something made stockholders start dumping UNUM shares at about 3 pm Tuesday afternoon. UNUM is the largest disability insurer in the world, with ties to the shrink lobby in the UK and a 20-year commitment to making sure no one with "chronic fatigue syndrome" recieves disability support.
Did any UNUM stockholders happen to read the Times op-ed today and notice the comment about the CDC's desire in 1987 to protect disability insurers from making "chronic disbursements"?
Did they look at that number--one million Americans sick with a devasting disease that may be about to be resolved by bona fide science? Did they read about the potential "dismantling" of the construct, "chronic fatigue syndrome" and the new name for the disease that afflicts people who are infected with an oncogenic retrovirus?
Did they scratch their chins and start thinking about a fast-approaching day when UNUM might have to start paying out on those claims instead of sending the claiment to search for shelter under the nearest bridge?
Something made stockholders decide to start pulling their money out of UNUM."
-------------------------------------------
(Here in the UK, the psychiatrists who have been using the neurological illness M.E. as a gravy train for years are known to work for UNUM and other health insurance companies.)
"But, anonymous, the ME militants say that CFS is nothing to do with ME. And of course the Americans dont recognise ME at all.
So is CFS a separate disease?
John"
The name for Myalgic Encephalomyelitis in America is Chronic Fatigue Syndrome/ CFS and was insisted on by the psychiatric profession, working for large health insurance companies.They've also done their best to change the name here.
It seems that many of us will have a new name for our illness, 'Xand'.
Do try to keep up dear, then you won't write such misinformed articles.
http://abcnews.go.com/video/playerIndex?id=8864348
"we don't want to hear any more about depression or 'it's all in the mind', that game is over...
....we need to take this virus as seriously as HIV..."
What a shame Dr Crippen that your Guardian article could not have called for urgently needed government funded research into xmrv, instead of your using it to take pot shots at M.E. patients.
Vested interests? I guess anyone who lists them will be called a 'militant', but here goes anyway.
The conflicting interests of the UK psychiatrists who have held a stranglehold on the taxpayer's funding of M.E. research and treatment are well documented. The Gibson report of 2006 recommended that they be investigated, but this was never done.
Prof Simon Wessely is a member of the supervisory board of a company named PRISMA. This same company is being paid many millions of pounds to supply ‘rehabilitation’ programs (such as CBT and GET) to the NHS for use on ‘CFS’ patients. Wessely is also an officer of the insurance giant UNUM.
Other psychiatrists involved who are connected to the medical insurance industry are Michael Sharpe, Professor Mansel Aylward, Anthony Cleare, John Locasio and Peter White – Wessely’s closest colleagues. Peter White is one of the chief medical officers for insurance company Swiss Re and their other “CFS experts” are Michael Sharpe and Simon Wessely, and they also use psychiatrist Anthony Cleare (a frequent co-author with Wessely). LoCascio of UNUM advised the UK DWP (Welfare Office) on welfare reform while Professor Aylward was in charge of UK DWP and then director of UNUM’s research establishment at Cardiff University.
What I find strange is that nearly the entire UK medical profession has colluded with them in their unscientific 'somatisation' theory of M.E. that has caused so much suffering, and in their deliberate mixing of M.E. and depressed patients. What have the rest of you gained by it?
It makes me sad Dr Crippen that your Guardian article could, if you had so chosen, have done enormous good for people with M.E.
You could, for instance, have called for the Medical Research Council to start funding biomedical research into M.E. in the light of the xmrv study.
Instead, you chose to malign patients who have already had years of this.
Whatever happened to 'first doing no harm'?
"What I find strange is that nearly the entire UK medical profession has colluded with them in their unscientific 'somatisation' theory of M.E. that has caused so much suffering, and in their deliberate mixing of M.E. and depressed patients. What have the rest of you gained by it?"
You don't think that this is just a teensy weensy bit of an over exaggeration do you? Do you actually think that 95% of doctors actually give a flying toss for your obscure little disease that you've just sexed up by adding an 'x' to?
"Do you actually think that 95% of doctors actually give a flying toss for your obscure little disease?"
No, we are very well aware that most doctors don't give a toss.
But the possibility that the quarter of a million M.E. patients in the UK might have a contagious retrovirus might just interest a few.
"WAAAAAH, it's all about ME ME ME!" Well-named your little 'syndrome'.
Riddle me this MEtards, if ME is a 'devastating retrovirus', then why does the Lightning Process work on 'sufferers'? Why are the 'sufferers' inevitably spoiled, middle-class, middle-aged white women?
As usual the good doctor researching your 'condition' has unfortunately made an error. Instead of constructing a hypothesis, researching and coming to a conclusion she's done it backwards. Any scientist worth their salt knows you cannot just say "I believe X must be the cause" and work to prove only that, excluding all other causes such as the moon being in pluto, too much exposure to pizza sauce, mental instability and bone idleness.
Also presence of a murine virus in human samples means bog all. It's not known to be zoonotic, it's probably down to lab contamination. Interesting to find where the samples came from, and if they were all handled by the same facility.
Until then I'll be donating to help real sufferers of really disabling problems. Not a bunch of avoidant, borderline, codependent 'tired' people. Childhood cancer is real, diabetes and epilepsy are real, ASD is real, AIDS is real, neurological disorders like SB, CMS and PTC are real. All worthy causes, all truly devastating. What some of those people would give to be a bit tired.
Oh and lol@ 'contagious retrovirus'. We'd all have it by now without knowing what precautions to take. Like HIV, remember that? You cannot label something as a contagious agent without specifying disease vectors (?middle-class women) or means of transmission (?Waitrose, ?Daytime TV)
Dr C,
Can you take a little look at Sleepy's post and remind me again: who are the irrational militants?
Anon @ 8:50am,
You must be right. It's Byron Hyde's fault for having a "vested interest" in listing ME symptoms and describing various tests that can aid diagnosis- how evil of him! He should be taken out and shot! A large number of physically very ill patients being rebranded as having psychological/somatoform disorders by insurance companies in the US to prevent them having to make payouts and then getting a bunch of shrinks on their payroll in on the game... That's not called vested interests- that's called "Evidence based medicine" ROFL!
Neelu
Poor Neelu. It must be awful seeing conspiracy everywhere you look.
cant read all these long blogs...........too long: haiku rules o.k. However that person who said they would rather have HIV than ME.................rather tastelss comment. I lost a wife and 3 children, to aids back in africa.
when you write something on a blog: be careful what you write: i feel so angry that 2 such illness`s can even be compared. i never heard of ME in Africa: the ngangas would care for such people
With all due sympathy to those lost to AIDS, the person who offered those comments was Dr. Nancy Klimas, a physician and researcher who works with HIV as well as other conditions, in the NY Times. The question posed to her was,
"I found the comparison to H.I.V. (all because it happens to be another retrovirus) to be alarmist, unnecessary and at worst, the kind of sensualist factoid reporting that’s more typical of a tabloid! From what I gather … the link between the two is weak and general at best.
"What angers me is that the comparison to H.I.V. is completely out of context; there are many retroviruses that are not known to cause any pathologies at all – comparing it to the one that is most well known and feared is simplistic and quite simply wrong. We should not forget that retroviruses have been common through out human history, and while some do not cause disease at all, most are nowhere near as extreme as H.I.V.
"To compare the virus to H.I.V. is to create undue alarm and suffering to people who are already dealing with a difficult disease. Not only is the comparison useless outside its context, it does nothing to provide useful information to the reader.
"I ask that you think of the moral consequences of your sloppy comparison — the horror and anguish of those that might have thought that it might be as debilitating as H.I.V., as well as the dread of the thought of potentially passing it on to another person."
Her response:
"You make a good point. This is one study, the results needs to be validated, then the next study will look at treatment options. And you are right, some retroviruses are seemingly benign, whereas others are pathogens.
"But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
"I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it."
Dr. Nancy Klimas in the NY Times
I would respectfully suggest you direct your ire to her directly either through the NY Times website, or perhaps to her faculty page at the University Of Miami:
Nancy Klimas, MD
In the meantime, I notice there have been more responses addressing the 'militant ME brigade,' and, as of yet, none responding to the link I provided from the National Cancer Institute; or the article originally published in the journal Science, either. Is there nothing in this paper that is worth responding to?
I know yo'll all jump for joy if it's a retrovirus. But then what? There is no virus on earth that medicine can cure.
So, I wouldn't get too excited just yet.
Dr. Thunder
www.twoweeksonatrolley.blogspot.com
If 100 independent samples are drawn from a population of which 4% have the retrovirus, the probability that 67 or more of the samples have the retrovirus is astronomically small. It would have about 50 zeros after the decimal point.
There may be other reasons why the study is inconclusive but, with that proportion of infection, sample size is not one of them.
there was a fire in the doctors surgery. The yummy mummy G.P.s jumped out the windows and ran home (they have kids). the receptionist was the only person who had attended a fire lecture and was the only person to stand in the appointed place in the car park. Dr Crippen went to save his laptop because it was new. the polymyagia rheumatica old lady hobbled out. the 4 day post hip replacement (at surgery to get sick cert) hobbled out. the suspected guillan barre and mysthenia gravis hobbled out. the M.E. patient ran out. the only person who died was the HIV positive cerebral toxoplasmosis confused patient who was on the loo having diarrhoea. the aronist who started the fire continued to have paranoid thoughts. but the cinderalla mental health team didnt know
Well, that explains a lot. Clearly you've risen above your misfortune and emerged a better human than prior. Certainly better than 'sleepy' or whatever this other paragon of genius and congeniality chooses to use as a moniker. Have a great day, both of you.
I obviously remain rather flawed by comparison, as I somehow imagined that the good Dr. Crippen might actually be interested in examining the results of the study in question, and what they might mean. Instead his choice was to begin a column in which his obvious focus was a relatively small patient population whose cause may not even be aided by the results of this study; although, if this were the case, I would guess the good doctor would have actually spent his column pointing out why and how. I can only assume that the science in the tag of this post points to the study itself; where the quackery and the mental illness lie is left to our imagination.
If the mental illness is supposed to apply to the 'militant ME brigade,' then is the study indeed quackery? This would of course call the reputation of the Cleveland Clinic & the National Cancer Institute into question. If the former is true and the study is indeed science, then what exactly does the quackery tag refer to?
Sleepy: you clearly know nothing about what at least some patients diagnosed with ME actually experience. I recently spent 9 months as a patient on a neurology ward in an NHS hospital, because my illness, diagnosed as ME/CFS by a consultant neurologist, left me unable to sit up, feed myself, and in so much pain I couldn't bear to be touched. I'm still bedridden and have been ill for 18 years. There were other patients with the same diagnosis on the ward who were paralysed and being tube fed. For years. We may be a minority, but some of us diagnosed with ME are very far from "a bit tired".
Please realise that even if science hasn't yet figured out what's wrong with us, it's worth investigating. Other conditions, including epilepsy, which you mentioned, have in the past been seen as neurotic or psychological in origin. It's a nice easy conclusion to jump to when there's a medical mystery. You could well look pretty stupid in the fullness of time.
I too would give anything to be just a bit tired.
Anonymous; you asked for a comment on your new virus link ocer at Cancerworld. I read it. It was a press release, not a paper. The paper is accessible only with a Science subscription which (at home) I can't currently access. It says:
"The discovery of XMRV in two major diseases, prostate cancer and now chronic fatigue syndrome, is very exciting. If cause-and-effect is established, there would be a new opportunity for prevention and treatment of these diseases."
Did you see that 'If' there? Quite important don't you think?
So..
Correlation does not mean causation. Basic tenet. Chant it. Not understood by the anti-vaccinators & Wakefield-lovers of the world. Even the authors of the press release (who presumably have, one would hope, actually read the paper) insert quite a specific coda to their findings. And, as another poster quite correctly points out, how are you going to eliminate this new virus that you've only just found about? Given that we find it damn near impossible to eradicate any of the viruses we HAVE known about for many years & sequenced ad-infinitum. And, if hypothetically this were possible, how do you know that eradicating the virus will reverse the disease?
And, what the hell is the link between prostate Ca & ME? Do men with ME have a higher rate of prostate Ca?
So, the revelation that 'revolutionary new finding of virus beginning with X proves we aren't mental' which is somewhat of an extreme extrapolation from a press release from a paper that points out they have NOT proved causation (and probably never will because, lets face it, you can't) does nothing but reinforce the ME loony stereotype you are rallying against. Thanks for the link anyway; I prefer my papers pre-digested for me through PR.
It's a bit rich Philip chanting 'correlation does not mean causation' at us all when research claiming that ME/CFS is psychosomatic (and can be cured by CBT/GET) relies on extremely weak correlations at best, on extremely unstable and confounding research populations in the first place, measuring rather inane and irrelevant variants which only reflect the researchers' own (highly subjective) assumptions. Yet the resulting mishmash of claims gets swallowed as scientific fact by a medical profession who should really know better.
How about you practise what you preach there Philip? Let's see that fine mind apply itself to critiquing and promoting caution on the poor evidence claiming psychosomatic causation. How come the good doctors never bother with that? Some consistency would be nice.
What we have in the Mikovits research paper is something that is statistically rather more significant, using a rather more stable population, measuring a single variant. Whatever future research turns up, it is much more stable and reliable, even at this early and tentative stage, than the psychiatric research. Now that is interesting.
So you read the Science paper then?
As for the other, as far from my area of expertise as possible. I have enough journals to read to keep up to date with 2 specialities never mind breaking viral/ME/CFS news. I only read the press release (not the paper) because you asked someone to. I didn't like it (as I said) and you apparently don't like me not liking it. It also seems the people who wrote the press release don't agree with your summation of the paper re causation. Sorry I didn't agree with you. But at least I followed your link & commented which you criticised 'us' for not doing. Now 'we' have. So you criticise 'us' for doing so.
Why do you even bother setting these pointless challenges? More to the point, why did I waste my time even thinking that reading (& commenting) would placate you.
How about you waste some of your precious time & go research ME & prostate cancer; maybe rather than asking pointless questions, you could answer some. Then we can shout back at you.
Philip,
You haven't made a word of sense.
I have read the Science paper. You haven't. No-one has said the paper means correlation equals causation. That's your belief only.
And looking at the psychiatric research with a more critical and less gullible eye is certainly not a 'pointless' challenge, though perhaps too challenging for you.
Throwing a hissy fit and declaring it all a waste of time doesn't distract from people noticing the problems of the psychiatric research on ME, and even the problems of the 'critiques' of this latest XMRV (many of the 'critiques' are themselves misinformed). While there are some questions to be asked of this research, and cautions to be taken on board, the inconsistency by which people have attempted to poo-poo this research, while ignoring the problem that the psychiatric research, all of it, is SO invalid and unreliable, is rather annoying at best.
So I'm taking it you WON'T be applying your fine mind to the inconsistencies and unreliabilities of the psychiatric research on ME/CFS.
Capgrass, or should that be crapgas, do read the comments properly before ranting about them.
The person who said they would rather have HIV than M.E. is an immunologist working with both illnesses, she is speaking out as an expert on them.
Her point is that there is effective treatment for HIV because large amounts of money has been spent on biomedical research. Very little has been spent on M.E.
"Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS:
“My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research.
“Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”"
Anonymous on Friday @9:05PM,
If ignorance is bliss- your life must be heavenly.
Anonymous @ 8:15pm,
Crapgas is very apt indeed- I like it:)
Neelu
@ Philip
"And, what the hell is the link between prostate Ca & ME? Do men with ME have a higher rate of prostate Ca?"
Three prostate/XMRV research papers:
January 07:
http://www.pnas.org/content/104/5/1449.short?rss=1&ssource=mfc
September 09:
http://www.pnas.org/content/early/2009/09/04/0906922106.abstract
October 09:
http://www.retrovirology.com/content/6/1/92
Anonymous said "Your invisibility cloak is slipping again, Dr F..."
Dr F?
Lawks a-mercy! You surely don't think "Dr Crippen" is Spiked's Michael Fiztpatrick?
Political bio here, according to Lobbywatch:
http://www.lobbywatch.org/profile1.asp?PrId=141
"Dr Michael Fitzpatrick is a GP in Hackney, London. He is a Trustee of the controversial lobby group Sense About Science. Mike Fitzpatrick, like his brother John, was a leading member of the RCP [Revolutionary Commmunist Party]. He frequently contributed to its monthly review Living Marxism under the alias Mike Freeman. Living Marxism later became LM, in which Fitzpatrick had a regular column. Fitzpatrick has also contributed regularly to Spiked and has spoken at events organised by both Spiked and the Institute of Ideas..."
Before his recent stint as a Guardian columnist, our "John" was a contributor at "Centre Right".
"CentreRight.com is a hub for the British conservative movement...it is essentially a high quality, multiple-authored blog written by some of the best conservative thinkers and commentators around."
I think "John" would be most amused if you had him down as a former member of the RCP. And leaving the politics to one side, none of the personal information about John's background that he slips into his blog posts, fits with Fitzpatrick, either.
"The findings have potential significance for a number of other disorders including, it turns out, autism.
Researchers tested blood samples from a "small group of children" with autism and found that 40% of them were positive for XMRV, according to a statement from the Nevada Commission on Autism Spectrum Disorders. More testing is underway which, the Commission said, "could dramatically increase that 40% positive finding." (Given the small sample size, such a statement is purely speculative).
As Dr. Mikovits explained to a television news program in Nevada, "It is not in the paper and not reported, but we have actually done some of these studies (in ASD children) and found the virus in a significant number of samples that we have tested for. It could be linked to a number of neuro-immune diseases, including autism. It certainly won't be all, because there are genetic defects that result in autism. But there are also the environmental effects; there is always the hypothesis that, 'My child was fine and then they got sick, and then they got autism.
According to Dr. Mikovits, XMRV (which admittedly sounds like a satellite radio system for your Winnebago) can lie dormant in people, until it is "turned on or off" by other factors, such as stress hormones like cortisol, or in response to the presence of inflammatory "cytokines," protein molecules secreted by immune cells to help regulate the immune system.2"
(I am always struck by just how many people with M.E. have children with autism, I do myself. Of course there's no biomedical research being done on this or any other aspect of M.E. in the UK because it's cheaper to pay psychiatrists to pretend we're bonkers.
Is xmrv crossing the placenta? It has been found in breast milk.
Why are tiny charities having to fund all the biomedical research of M.E. in the UK?)
Immunologist Nancy Klimas gives an insightful interview on xmrv here, & wow! the doctor doesn't even have to hide behind anonymity to give it as 'Dr Crippen' has to:
http://www.youtube.com/watch?v=IEm_T0Q0PHg
She states that the illness is being taken seriously these days.She wouldn't have said that if she'd read 'Dr Crippen's ' moronic article.
Re: research funding for MEtardation. Why? There are plenty of actual, physical diseases with visible signs and a rigid diagnostic criteria that aren't given research funding. This is either because they aren't 'sexy' or because they only affect hundreds of thousands of people rather than millions. The condition I have has 1 research group in the world. One. You know how that group came about? A research scientist's kid developed it. If not for that twist of fate then there'd be no-one. As it is there is no treatment, no cure, and a life of constant crippling pain. Brutal and barbaric surgeries can relieve this pain for up to a year but can only be done once or twice. After that you're done for and have to live with the condition and the side-effects of the failed surgical interventions. Why would anyone, then, piss money away on dopey shut-ins with vague 'symptoms', no diagnostic criteria, no proof of existence and which astonishingly still almost without exception affects white, middle-class women?
There's an interesting inverse correlation betwen your class status and age of 'acquisition'. More money = younger 'sufferer' and VV. Yet still you remain overwhelmingly white and female. Disease does not work like that I'm afraid.
I still think Waitrose and M&S are the cause of 'ME'.
Why not petition the M&S Food voiceover lady, Dervla Kirwan is it? "M&S&ME - a new campaign highlighting the chronically tired and fed-up, as well as the exciting new chilled food range! This is not just an illness, it's an M&S illness*"
*ie - given undue attention because of wailing white women, overpriced/funded, and ultimately a sham.
"Why would anyone, then, piss money away on dopey shut-ins with vague 'symptoms', no diagnostic criteria, no proof of existence and which astonishingly still almost without exception affects white, middle-class women?"
There's always one, isn't there?
No diagnostic criteria?
See pages 116-7 of the Royal College of Paediatrics and Child Health Evidence Based Guideline for the Management of
CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalopathy)2004:
Holmes et al 1998
Australian 1990
The Oxford Criteria, Sharpe et al 1991
Fukuda et al 1994
2003 Canadian Definition, Carruthers et al
Fukuda 1994 and Canadian Criteria were used for the Whittemore Peterson study.
Why do you say "no diagnostic criteria" - you are ill informed.
The 2002 Chief Medical Officer's Report of the CFS/ME Working Group at:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4064840
also lists diagnostic criteria (pages 75 and 76) and includes the "London 1990 (ME) Criteria".
So that's two UK documents that "Sleepiest" can refer to for diagnostic criteria.
"Sleepiest" wrote:
"...almost without exception affects white, middle-class women?"
Would you like to support this assertion with data, please, "Sleepiest"?
I am the parent of a young man, now 23, who developed acute onset ME at the age of 12 (please note, "Sleepiest", he was diagnosed by an NHS paediatric consultant, not by his mother). Large numbers of children, some as young as five, many of whom are boys, are ME patients and there are large numbers of men with ME, from all social backgrounds.
It is the case that more females that males are diagnosed with ME but your assertion that ME "...almost without exception affects white, middle-class women?" is again, ill informed.
More women than men develop RA.
More women than men develop Multiple Sclerosis.
Do you have similar issues around the correlation between gender and RA or gender and MS?
as xmrv has also been found in an aggressive form of prostate cancer, Sleepiest's stupid comment about it only affecting women made me laugh.
"A prominent scientist in the field notes: “There have been enough tilt tables and enough questionnaires. Why fight a battle with shrinks when there’s a deficit in the B-cell?"
http://www.oslersweb.com/blog.htm?post=641747
The esteemed Professor Peter White doesn't see things that way...not a fan of tilt-table tests.
you mentioned tests you don't think it's right for you to do, such as?
PROFESSOR WHITE
Such as the tilt-table test where in the Canadian guidelines the idea is that I would have to exclude the condition called postural hypertension, that is the fall of blood pressure when you stand up. And that is quite a complicated test and I don't think that's justified.
You and Yours transcript
I'd ask Dr. Crippen what he thinks but I get the feeling I'm not going to get much of a response.
I'm still wondering why he's not interested in addressing this. You geniuses who choose to downplay or mock this condition and those diagnosed with it sure haven't had much to say about the fact that XMRV was detected in 4% of the healthy controls. Oh, but heck, why bother with that when it's obviously just as useful to assume that people can't read that the term 'press release' is actually part of a URL? The point wasn't that it was a press release; it was more a matter of the credibility of the entity that released it, and what it actually announced. I would think that 'Cancerworld,' as it was so brilliantly put, has a reputation to maintain, and there is something at stake if they choose to issue a press release based on anything dubious.
But that's okay. There's more than one interested party who hasn't read the paper who seems to have an interest in trying to debunk it.
"Science-Based Medicine"
Comments such as
"You write a lengthy piece rubbishing a paper published in “Science” and you haven’t read it? And the name of this website is….?"
speak volumes.
Then there's one who is doing their best, with not one, not two, not three, but FOUR
attempts to try to poke some holes in the study.
Why?
"It doesn't make sense."
No, really. You can find the links to the other posts at the top of the page I just linked. But this one here has a bit more detail on the author's observations. To wit:
"Overall conclusions--
The science of this paper is fine. Their experiments are fine. And, there is clearly a bias for the presence of XMLV in CFS patients.
BUT, this story doesnt make sense."
I'm not making this up. Go ahead, read the linked posts.
It DID make sense to THIS guy.
And THESE folks. (Doesn't say "Press Release in THAT there URL, geniuses take note)
Looks like the link I plugged in for "Science-Based Medicine" was incorrect. If it's still not right--
http://www.sciencebasedmedicine.org/?p=2096
Next urgent matter: absurdly, it is necessary to idiot-proof my posts. So, to be perfectly clear: nowhere do I imply that correlation equals causation.
Got it?
Good.
Now: there is a part of me that almost doesn't WANT there to be a more definitive link, although, as a layman, my sense is that it 'makes more sense' than "ERV" seems to think at this point. In spite of the improved chances that effective treatments may become available to sufferers. Now why--especially since I have been branded as one taking up the cause of ME sufferers--would I take this position?
Well, think about it.
If there is a link...and, eventually, after further research, the correlation we now see leads us to identify XMRV as a causative agent...well, what then, Dr. Crippen?
You've been silent thus far on this. I do KNOW that's a big if. But...IF...what then?
Then, well, you've got 4% of a healthy population walking around with this retrovirus.
That could mean something. It could mean little or nothing. But, heck, it could well mean something.
One of the things it would mean is that it would be found in the blood supply.
Another would be that research along the same lines, or following up on, the work of Elaine DeFreitas from nearly 20 years ago...was not taking place for...nearly 20 years.
During which we've heard so much about psychiatrists being the recipients of funding in the study of this illness.
Something tells me they weren't doing lab experiments looking for retroviruses. (Cue those who will weigh in to oh so carefully explain that the Wistar findings were debunked because they could not be replicated...or that the recent study in Germany did not find a linkage between prostate cancer & XMRV...this gets tiresome...have at it)
Like I said, there's a part of me that doesn't want this to pan out: the implications are...wait, I just don't have the best adjective at the moment. Maybe someone can help me out.
Nah, forget it. Oh, and it doesn't really matter what I want, or what part of me wants. I do think this is going to lead to more definitive linkage, and, eventually, effective treatments for ME sufferers. It goes without saying that this is the most important factor here. Unbelievably unimportant, yet barely, somehow, still worthy of mention, is the utter lack of understanding and compassion from those who would in this scenario be exposed as...cruel bullies?
Irrelevant. They have to live with themselves now, and they will have to live with themselves in the future as well, regardless of what it brings.
Now, if y'all want to attack my musings in this post, that is your right & privilege, subject to what Dr. Crippen allows to be published in his comments section. For my part, though, I'm just another person with a keyboard.
Who's still wondering why Dr. Crippen was so interested in writing a piece that focused so much on the 'militant ME brigade' while not spending much time on any of the other aspects of the story.
Either Science, the National Cancer Institute, Cleveland Clinic, National Institute Of Health, and Nancy Klimas have no credibility, or perhaps some of this perhaps should've crossed his mind?
@ Sleepiest. Please inform yourself around ME symptoms:
http://www.me-forening.no/index.php?option=com_docman&task=doc_download&gid=89
Nurs Stand. 2005 Feb 2-8;19(21):38-43. Supporting people with severe myalgic encephalomyelitis. Crowhurst G. PMID: 15727017 [PubMed - indexed for MEDLINE]
This article aims to raise nurses' awareness of myalgic encephalomyelitis (ME) also known as chronic fatigue syndrome (CFS). Key symptoms are presented along with possible service responses and treatment options.
My heart sank when I opened the Guardian and found that you had a column there. I knew you would lose no time in expressing your usual contempt for M.E. patients. A balanced article on the study would have been appropriate, but the Guardian have not published one.
You are wrong to say that what we are celebrating is the possibility of having a retrovirus (and we are not celebrating with champagne, don't you know that one of the symptoms of M.E. is alcohol intolerance). What we are celebrating is the possibility of an ending to the UK medical profession's abuse, neglect and cruelty toward us.
Like many M.E. patients I do not go near a NHS doctor unless I absolutely have to.
If people with mental disorders have been misdiagnosed as having M.E. that is the UK medical profession's fault, not the patients'. M.E. is a discrete neurological illness.
WORLD HEALTH ORGANISATION (W.H.O.) DEFINITION OF M.E. ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization's International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the "fatigue" of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological clinical disorder.
Crapgass says there's no M.E./CFS n Africa. The ME Assoc. of South Africa would be surprised to hear his views.
The Durban outbreak of the 1950s is well documented,
" Durban and Durban City, South Africa
Outbreak among nurses at Addington Hospital called "The Durban Mystery Disease" describing neuromuscular dysfunction, and epidemic myalgic encephalomyelopathy, including sporadic cases in Johannesburg of a outbreak resembling poliomyelitis."
.... that was before psychiatrists working for large insurance companies became involved in pretending the illness is a somatoform disorder to save these firms paying out millions,with the result that all biomedical research and treatment ceased.
OK. I've read the paper now. Not the press release. "Cancerworld" was a genuine mistake (thanks for the mocking) as I actually thought that was what it was called. Profuse apologies.
Unlike some, I have no criticism of the paper. It seems scientifically sound to me (and, as stated, my clinical expertise is very far removed from laboratory virology techniques) but the conclusions accurately represent the findings. No causation is implied by the paper. The correlation is statistically significant. Nothing is proved but it is certainly very interesting.
For those of you who attack scientists who poke holes at the science (linking to several criticisms of the paper), I presume you are aware
that this is how science works? You publish, you are criticised by your peers, your work either stands or fails depending on the quality of your work.
So.... what happens now?
What further research would you like to see performed? What questions would you now like answered? Given the paranoia expressed at 'Big Pharma' (whatever the hell that is), how do you think an antiviral will be developed (independently?) that will ameliorate the reproductive capacity of XMRV? God forbid, suppose a vaccine is possible. Is this something you would take? What happens when Wakefield-paranoia meets XMRV-vaccination? All I can see is people exploding in a confused frenzy.
Are you lobbying the government & the MRC for funding? Or are you just posting recurrent sarcastic comments on blogs?
(When/if answering, please try to remember that I am actually on your side. In a similar vein of those asking where they associated correlation with causality I would like to point out I am not and have never been an 'ME denier'. I merely questioned the press release pending online access to the paper which I have now read and agree the correlation between the presence of XMRV & ME is strong & statistically significant. Unless of course there is an as yet unidentified confounder. Attacking people who agree with you is not a nice way to make friends)
Anonymous wrote:
"WORLD HEALTH ORGANISATION (W.H.O.) DEFINITION OF M.E. ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization's International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the "fatigue" of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological clinical disorder."
It needs clarifying that the passage above is not a statement from the WHO. The entire passage should be attributed to Page 1 of "An Overview of the Canadian Consensus Document", Carruthers et al, which can be downloaded at:
http://www.mefmaction.net/Patients/Overviews/tabid/122/Default.aspx
The WHO classifies Postviral fatigue syndrome and Benign myalgic encephalomyelitis at G93.3, in Chapter VI of ICD-10 Volume 1: The Tabular List.
Chronic fatigue syndrome is included in ICD-10 Volume 3: The Alphabetical Index, indexed at G93.3.
http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933
But it would be incorrect to present the passage quoted from the Overview of the Canadian Consensus Document as though it were a WHO "Definition" of ME.
Although WHO classified PVFS and ME in ICD-10: Volume 1 and included Chronic fatigue syndrome in Volume 3: The Alphabetical Index, the WHO has not published Definitions for PVFS, ME or for Chronic fatigue syndrome.
In 2007, the WHO began the revision process of ICD-10 towards ICD-11, which is scheduled for publication in 2014/15.
You can view nine ICD Revision YouTubes here:
http://www.youtube.com/user/WHOICD11
But for more detailed information on the proposed structure of ICD-11, the Content Model and operation of iCAT, the collaborative authoring platform through which the WHO will be revising ICD-10, there are key documents available on the ICD11 Revision Google site:
https://sites.google.com/site/icd11revision/home/documents
Philip said:
"Are you lobbying the government & the MRC for funding?"
The ME patient community has been active in lobbying the government and the MRC for many years.
Research into CFS and ME has been designated a Medical Research Council "high priority" area. The MRC convened a Research Advisory Group in 2003. Six years down the line, we are still waiting for the MRC to put its money where its mouth is.
There's been a consultation exercise and the controversial joint MRC/Action for M.E. 2006 Research Summit; a new multidisciplinary "Expert Group on CFS/ME Research" was convened last year, chaired by Professor Stephen Holgate. The MRC "CFS/ME Expert Group" is holding a two day research workshop on 19 - 20 November (no agenda has been published so it is not yet known who will be participating).
For how many more years is the MRC going to be talking about its objective to "encourage and conduct high-quality research" into CFS and ME...
By 'high quality' research the MRC mean only 'psychological 'research' done by their GOBSART psychiatrist chums.
The MRC appear to be accountable to no-one. They turned down Dr Kerr's application for funding for his vitally important research into the genetics of M.E., which had to be funded by tiny charities.
If we object to this situation we're labelled militants.
Philip.
You can't blame people for challenging your comments if there's a problem with them. You made some comments which people disagree with- they disagree with you.
Sadly, in the world of ME, sufferers and their advocates get attacked just for the act of disagreeing- the old, tired 'ME militant brigade' accusation being a case in point.
'Sarcastic comments on blogs'? Implying people don't understand 'how science works'?Good grief man- do you not understand how sarcastic your own tone is? Or is it one rule for you, and another for the proles?
Sadly this all matters. For years the ME community and their supporters have been subject to all sorts of ad hominem- their tone is too strident, they're 'militants', they don't know what they're talking about - the reasonable objections of the community at large are CONSTANTLY misrepresented. As a result- people are becoming more afraid to even open their mouth, or are scared to support others who argue on their behalf etc. etc. Even those of us brave enough (or well enough, or not exhausted by the avalanche of bollox-and that includes those of us NOT felled by the disease) to speak out are finding we have to wade through reams of ad hominem and other logical fallacies just to extricate the little occasional nugget of relevance that can be debated, or rebutted if necessary, with any cogency. Philip your own rant is a case in point: an awful lot of sarcasm, bluster, and ad hominem to wade through before we come to any relevant points.
So when people get called on their ranting, ad hominem, whatever, it's because some of us are trying to establish a level playing field for rational debate between patients/advocates and others who claim to be practising science. It's necessary because people like Crippen (though not exclusively him) have been littering the field with this sort of rubbish for far too long, making the field unusable.
Philip, thank you for your open-mindedness and civility. I will respond further later.
an individual's letter to Dr John Coffin,Special Advisor to Director, Centre for Cancer Research, National Cancer Institute, asked
"I understand you are at the top of your field in regards to HIV and retroviruses. So, what is your opinion on the XMRV retrovirus and its relationship with ME/CFS and FM?"
he answered:
"My opinion on the relationship between
XMRV and CFS is as Dr Stoye and I expressed it in our recent
Perspective in Science:
That the results presented to date show a
very striking association between infection with the virus and the
disease. At this point, they do not definitively establish that
infection causes CFS, although that may eventually prove to be the
case. Other explanations for the association are still possible.
Our ignorance in this respect is not at all surprising. Causality in
infectious disease is very hard to prove."
what a difference between this specialist's polite, considered answer and Dr Crippen's muddled article vilifying M.E. patients.
In the brief intro flagging up this Guardian piece on ME, Dr Crippen has written "The militant wing of the Myalgic Encephalomyelitis (ME) brigade broke out the champagne..."
For the phrase "militant wing" Dr Crippen has embedded a link to the personal website of Jodi Bassett. Since Jodi Bassett has not issued a position statement on the XMRV Whittemore Peterson study, either in a personal capacity or as a spokesperson for The Hummingbirds' Foundation for M.E. (HFME), is this not very presumptuous of Dr Crippen?
Should he not have first established what Ms Bassett's position (and that of her organisation) is?
Correct, Suzy. Good point.
By the way, the WPI has provided linkage to a lab they apparently do approve of, unlike the one with the press release last night.
Just FYI.
"Causality in infectious disease is very hard to prove."
Wow. I can't believe I said the same thing as a world expert on virology.
Suzy - I hope this finding will only add impetus to the MRC's much delayed promise of money.
SilverWellies .........
People with a serious neurological illness need effective biomedical treatment. They do not need graded exercise, cognitive behaviour 'therapy' or their brains fried with antidepressants.
People with mental disorders need understanding and psychological treatment.
What the two groups do not need is being mixed up together and jeered at, but this is exactly what the UK medical profession has been doing for the past 25 years.
'Chronic Fatigue Syndrome: la bete noire of the Belgian Health Care Syste=
m'
Maes M, Twisk FN.
Neuro Endocrinol Lett. 2009 Aug 26;30(3):300-311.
Maes Clinics, Antwerp, Belgium. crc.mh@telenet.be.
http://www.ncbi.nlm.nih.gov/pubmed/19855351
The World Health Organization acknowledges Myalgic Encephalomyelitis
(ME)/Chronic Fatigue Syndrome (CFS) to be a medical illness. ME/CFS is
characterized by disorders in the inflammatory and oxidative and
nitrosative stress (IO&NS) pathways. In 2002, the Belgian government
started with the development of CFS "Reference Centers", which
implement a "psychosocial" model.
The medical practices of these CFS
Centers are defined by the Superior Health Council, e.g. treatment
should be based upon Cognitive Behavioral Therapy (CBT) and Graded
Exercise Therapy (GET); and biological assessments and treatments of
ME/CFS should not be employed. Recently, the Belgian government has
evaluated the outcome of the treatments at the CFS Centers. They
concluded that a "rehabilitation therapy" with CBT/GET yielded no
significant efficacy in the treatment of ME/CFS and that CBT/GET
cannot be considered to be curative therapies.
In case reports, we
have shown that patients who were "treated" at those CFS centers with
CBT/GET in fact suffered from IO&NS disorders, including intracellular
inflammation, an increased translocation of gram-negative
enterobacteria (leaky gut), autoimmune reactions and damage by O&NS.
Considering the fact that these findings are exemplary for ME/CFS
patients and that GET may even be harmful, it means that many patients
are maltreated by the Belgian CFS Centers.
Notwiths.tanding the above,
the government and the CFS Centers not only continue this unethical
and immoral policy, but also reinforce their use of CBT/GET in
patients with ME/CFS treated at those Centers
@ Three Chord Monty
ME is becoming a leitmotif running through John Crippen's blog. Is this the forth or fifth time that John has written about ME, or rather, about his perceptions of ME patients? Does John derive a frisson from rolling the word "militant" around on his tongue - for here it is, again, in this opinion piece for the Guardian.
On each occasion that he has written on the subject, John has demonstrated only a superficial grasp of the medico-political issues attached to ME and scant insight into other issues. For example, he does not have a good understanding of our national and "local" patient organisations nor does he appreciate the concerns that many within the ME patient community have about the way in which some of these organisations are governed and the way in which they operate - and why should he?
But in a previous posting, John was blythely promoting the Sussex and Kent ME and CFS Society to us, oblivious to the fact that many within the ME patient community consider its leader and his MO to be "part of the problem".
I doubt that any of those contributing to this comment section would presume to recommend professional organisations to John, as a medic. But John does not stop to consider whether his commending of the "Sussex Group", based purely on its website, might be viewed as more than a tad paternalistic and patronising.
Given Jodi Bassett's very robust opinions around "Chronic Fatigue Syndrome" (under which term the W P Institute study has been published) it would have been prudent if John had either studied the websites or approached Ms Bassett for her position before making assumptions about her response to the findings of a study carried out under the term "Chronic Fatigue Syndrome".
Once again, John has jumped in without first having done his background research.
Re a link on the WP Inst. site for a WP Inst. approved lab. I haven't been able to spot this. If you have time, Three Chord Monty, would you be kind enough to send me the link via my website Contact form?
In the last couple of days, Dr Judy Mikovits has given a Public Presentation on the XMRV/CFS discoveries (Dr. Vince Lombardi in attendance) at the University of the Pacific. It's understood that a videocast of the presentation (which is said to have included new material not yet reported on) will be available soon on the U of Pacific website.
News Release here:
http://web.pacific.edu/x31783.xml
Fatigue Syndrome Researchers to Speak on Campus
@ Philip
You wrote, "I hope this finding will only add impetus to the MRC's much delayed promise of money."
UK researcher, Dr Jonathon Kerr, and Dr Judy Mikovits have recently been awarded a 5-year, $1.6 million grant from the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) to support ongoing research into the disease mechanisms of chronic fatigue syndrome.
Dr Kerr is a member of the MRC's "Interdisciplinary CFS/ME Expert Group".
Professor Stephen Holgate chairs this MRC CFS/ME "Expert Group" and he is also a member of the CFS Research Foundation's Research Committee, the research charity that has, for many years, funded studies by Dr Kerr. Prof Holgate has, himself, been a collaborator in some of those studies.
Dr Kerr has had applications for research studies rejected, in the past, by the MRC. It remains to be seen whether the MRC would be open to consideration of further applications for funding from Dr Kerr and colleagues in the specific area of XMRV, or whether Dr Kerr's holding of a seat on this MRC Expert Group might be viewed as a COI. I would like to think that even if the MRC were unable to fund Dr Kerr in replication studies, within the UK, that the MRC will give consideration to applications from others in the area of XMRV.
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Why do I get the feeling Dr. Crippen is not particularly interested in the CFSAC meeting currently being webcast, live, as I type this?
Especially the stuff about infection after transfusion...and the continual references to protecting the blood supply. In fact, a committee member just pleaded with CFS/ME patients to not give blood. She actually mentioned that someone has mentioned that patients have discussed among themselves the idea that giving blood would potentially light a fire under the CDC.
Giving blood simply to exploit this would in my view be quite irresponsible, and I strongly support her call that CFS/ME patients do NOT give blood. What all this could mean for the blood supply is why I stated that there is a part of me that almost hopes the XMRV findings are not as significant as they appear to be--because of what that means for the blood supply, and that this retrovirus may be found in as much as 4% of the population. How this could get to this point...is another matter.
The information given at the hearing certainly sounds as if there should be reason for concern. If that is the case, then I will say that there are some psychiatrists who are going to have to explain how someone stricken with symptoms due to 'abnormal illness beliefs' are in a position where they should not be considered for blood donation.
I won't hold my breath waiting for the good Dr. Crippen to respond.
I'm still trying to figure out where the quackery lies here.
Philip:
>how are you going to eliminate this new virus that you've only just found about? Given that we find it damn near impossible to eradicate any of the viruses we HAVE known about for many years & sequenced ad-infinitum. And, if hypothetically this were possible, how do you know that eradicating the virus will reverse the disease?
And, what the hell is the link between prostate Ca & ME? Do men with ME have a higher rate of prostate Ca?
I don't really have the answers to these questions. I am a layman. I am encouraged, however, that there seems to be a far more solid basis to these findings than much of what has come down the pike. I would guess that treatment therapies are going to relate in some way to how HIV is treated. Whatever it is, whenever it happens, I would guess there will be options that make sense and probably some that don't. There may be difficult choices that some may have to make.
>So, the revelation that 'revolutionary new finding of virus beginning with X proves we aren't mental' which is somewhat of an extreme extrapolation from a press release from a paper that points out they have NOT proved causation (and probably never will because, lets face it, you can't) does nothing but reinforce the ME loony stereotype you are rallying against.
I strongly suspect that were you watching the webcast at the NIH that I am viewing you would choose to rephrase that.
>"Cancerworld" was a genuine mistake (thanks for the mocking) as I actually thought that was what it was called. Profuse apologies.
Not a problem. I responded to what looked like snark with snark. No harm, no foul; glad to move on.
>Unlike some, I have no criticism of the paper. It seems scientifically sound to me (and, as stated, my clinical expertise is very far removed from laboratory virology techniques) but the conclusions accurately represent the findings. No causation is implied by the paper. The correlation is statistically significant. Nothing is proved but it is certainly very interesting.
This is what I would have thought Dr. Crippen would have chosen to write, with plenty of room for editorial content. But you see what he chose to write. Any idea why, you think?
>For those of you who attack scientists who poke holes at the science (linking to several criticisms of the paper), I presume you are aware that this is how science works? You publish, you are criticised by your peers, your work either stands or fails depending on the quality of your work.
No, I was not aware that science worked in a way where criticism was based on "It doesn't make sense." Mind you, I've seen several criticisms of the paper. In the case of the four by the blog I supplied one link to, that was what most of the criticism amounted to. In another, the criticism was supplied by a blogger who admittedly hadn't even read the paper. Once you did, you had the decency to offer your remarks. "Science-Based Medicine" has not offered any followup remarks that I know of. Should this not more accurately be labeled 'opinion-based medicine?'
>So.... what happens now?
What further research would you like to see performed? What questions would you now like answered? Given the paranoia expressed at 'Big Pharma' (whatever the hell that is), how do you think an antiviral will be developed (independently?) that will ameliorate the reproductive capacity of XMRV? God forbid, suppose a vaccine is possible. Is this something you would take? What happens when Wakefield-paranoia meets XMRV-vaccination? All I can see is people exploding in a confused frenzy.
I have no paranoia related to Big Pharma (think you might've either misunderstood or confused my remarks with someone else), but I don't really have good answers to the rest of your questions because, as noted above, I am a layman. I will say that for all the flaws of 'Big Pharma,' I believe their virtues are vastly underreported, and given their interest, I do believe they may now provide quite a bit of hope for people who up until now have not had great reason to find optimism. I don't know the "Wakefield" reference, but I get the idea. I am not a member of the anti-vaccination...whatever. I think there are probably valid concerns, but it's not a perfect world and for the most part, I believe we do have to place at least SOME trust in medical science. I have never refused a vaccine or felt there was a reason to do so. However, if I did have reason to refuse one, I would not accept it. But that's a judgment call I would never make because a celebrity has a child who may actually have been harmed by a vaccine (or may not have). I have faith in the medical professionals I see to make those judgments for me--for the most part. Blind faith? No. And the internet is a valuable tool. Ultimately we have to weigh all the available evidence and make the best informed decision possible. I do think the best thing I can do is to listen to my doctor and give his professional opinion the high degree of significance it deserves in my medical decisions.
I'm not sure I would feel that way if my doctor was Dr. Crippen.
>Are you lobbying the government & the MRC for funding? Or are you just posting recurrent sarcastic comments on blogs?
Both.
>Attacking people who agree with you is not a nice way to make friends
Done.
Don't you think it's a bit strange that Dr. Crippen wrote the piece he did given what you found in the paper?
Annette Whittemore has said at the ongoing CFSAC meeting that xmrv is the piece of the puzzle that can't be ignored. and that today ends the debate - ME/CFS is NOT and NEVER WAS a psychiatric illness.
Concerning testing - she said everyone has the right to know if they have xmrv in order to stop the progression of this disease and get treatment.
Here in the UK doctors are not allowed to prescribe antiretrovirals for ME/CFS. Will the situation change, or will the psychiatrists working for large insurance companies, who take all the research and treatment funding, continue to insist that we are somatising?
One speaker with ME/CFS said of the CDC 'all you've done for 30 years is call us names - that's what bullies do."
The same is true of the NHS.
@Three Chord:
"No, I was not aware that science worked in a way where criticism was based on "It doesn't make sense." "
A key tenet of scientific proof is plausibility. If the conclusion seems completely nonsensical then the method by which that was arrived at should be subject to excessive scrutiny. Go look up helicobacter pylori & stomach ulcers and the lengths the 2 Australians had to go to to prove their case.
As you are a layman (by your own admission) I presume, as you are reading and critiquing specialist scientific papers, then you have read about 'how to read a paper'. I'm not patronising you, just suggesting that you should if you haven't.
Two good versions are here:
www.ivis.org/proceedings/aaep/1999/280.pdf
and here:
http://www.biochem.arizona.edu/classes/bioc568/papers.htm
Both these can be applied to the Science XMRV paper.
On a side issue, I never stated you were personally against drug companies. I don't work for them, never have, and refuse to attend their sponsored junkets. Some of my colleagues however do. My comments regarding the potential for vaccination were hypothetical & related to potential conflict between 2 groups which would be expected to have some overlap - the anti-pharma-anti-vax & ME support groups. I didn't aim these comments at you.
@Anonymous:
"Here in the UK doctors are not allowed to prescribe antiretrovirals for ME/CFS."
Nor should they be until a randomised double-blinded multi-centre controlled trial actually shows they work. Hopefully that trial will now proceed. Which antiretroviral are you going to use? Do you want to increase the incidence of XMRV by inducing resistance with indiscriminate use of untested drugs? Do we even know how XMRV reproduces (other than through a DNA intermediate)?
Do you see why doctors might get frustrated at the leaps of logic made by people?
Just as an aside, and as a comment on the scientific process, the statement earlier that XMRV is linked to prostate cancer would seem to have new literature against it on that one.
A quick pubmed search for 'XMRV' and 'prostate cancer' shows several papers that contradict the reported correlation between XMRV & prostate ca in American patients.
If you wish to read:
http://www.retrovirology.com/content/6/1/92
http://www.ncbi.nlm.nih.gov/pubmed/18823818
Both these are for German patients. Even more interestingly, the former paper shows no XMRV antibodies in any of the patient's serum suggesting no previous exposure either.
My point is whilst some may be planning entire treatment regimens based on a single positive XMRV paper, it is probably not wise to do so. Yet.
Philip:
>A key tenet of scientific proof is plausibility. If the conclusion seems completely nonsensical then the method by which that was arrived at should be subject to excessive scrutiny. Go look up helicobacter pylori & stomach ulcers and the lengths the 2 Australians had to go to to prove their case.
That's all fine and well--perfectly reasonable. I don't know, can't say, where the science will lead, so my speculation will vary in importance depending on who you ask. But there have been more than a few people & places--you included--who do understand the particulars and found the paper to be sound. I do find it interesting that the people with the blogs in my links who are down on this are basing the vague-looking criticisms either on perceptions that exist without benefit of actually reading the paper--which, to your credit, you did--or "It doesn't make sense." Well, fine, but that just seems more speculative than it does actual scientific criticism.
I am remotely familiar with the ulcers issue, and it's been brought up as being somewhat analogous to the history of CFS/ME. I would agree with the point that regardless of agenda, society and medical science are both best served if the findings have withstood rigorous scrutiny. This is the first positive step in a long struggle that has a long way to go. But I do think that one thing that will ultimately be established in the short term is that the 'abnormal illness belief' model is a cruel caricature that may apply to a very small number of people yet is used to define a large and very different group of people who suffer horribly. In addition, hopefully this will put an end to the clever trap of castigating people who deny psychological/psychiatric issues as being insensitive to patients whose suffering actually does emanate from those issues. The characterization of CFS/ME patients as thinking negatively of those with mental or emotional issues as a primary cause of symptoms is a false construct. All it would take for people to realize this would be to gauge mass reactions to patients being told it's all in their head if what the problem actually is, for instance, a broken limb.
>As you are a layman (by your own admission) I presume, as you are reading and critiquing specialist scientific papers, then you have read about 'how to read a paper'. I'm not patronising you, just suggesting that you should if you haven't.
I have not read the paper. I have seen the abstract and have relied on the reactions to it from all quarters to render a judgment on its validity. I do not take insult at your suggestion. I am not sure that I can apply the discipline I would think is required to render a firsthand judgment, but I appreciate the links and will take a look.
I well realize that my views on the validity of the paper have not necessarily been arrived at scientifically. But from what I have seen it's safe to say I may confidently view the study as valid, for what it's worth--and, importantly, not for what it's not worth.
>On a side issue, I never stated you were personally against drug companies.
No harm, no foul; I picked that up somewhere in the thread, perhaps in error. My point was that I do not engage in knee-jerk criticism that isn't necessarily based on anything in particular outside of opinions foisted by agenda-driven media.
>My comments regarding the potential for vaccination were hypothetical & related to potential conflict between 2 groups which would be expected to have some overlap - the anti-pharma-anti-vax & ME support groups. I didn't aim these comments at you.
No problem. I took the H1N1 vaccine today, not without some trepidation based on what I've read about it, but because my doctor recommended it, and I do not take his recommendation lightly. Activism can lead to dicey, personality-driven issues that muddy the discussion. I have spent most of my life not particularly wanting to be involved to any great extent because of the shrill nature of the loudest voices. On the other hand, in a great many cases positive developments moving forward may not have taken place without those loud voices. It can be challenging to try to figure out who you're comfortable with speaking for you, and the ME debate is a great case in point, given the ability of Crippen to dismiss some folks out of hand and marginalize others. I point out again that he doesn't seem interested in debate on the very issue he put up this post to address--beyond his familiar tactics of dismissal and marginalization, which I had hoped he'd moved on from. You do notice he has been remarkably silent except to challenge those who have a stance he is comfortable addressing...but not me?
>>prescribe antiretrovirals for ME/CFS."
>Nor should they be until a randomised double-blinded multi-centre controlled trial actually shows they work.
Agreed.
>Hopefully that trial will now proceed.
Hopefully. I suspect it won't come so easily given the agendas that bring certain pressures to bear. In the same year when the lawsuit challenging the NICE guidelines was thrown out...there is far more work to be done, apparently, on your side of the pond. Hopefully I'm wrong about that and progress--as opposed to what's gone on for decades in most places, but especially in your country--will be made. What has gone on over here in North America is bad enough. In the UK? An absolute disgrace. I wouldn't easily toss around a word like torture, Philip, but while CBT may be merely inappropriate as a primary treatment, Graded Exercise Therapy for CFS/ME patients is disgusting, cruel and, yes, torturous. I hope you take from my posts, long as they are, that I attempt to at least maintain a focus on reason, so I don't use that term lightly. From what I know, that's the word I would use.
>Which antiretroviral are you going to use? Do you want to increase the incidence of XMRV by inducing resistance with indiscriminate use of untested drugs? Do we even know how XMRV reproduces (other than through a DNA intermediate)?
Do you see why doctors might get frustrated at the leaps of logic made by people?
I know this is not directed at me, but I do want to say that if this is not an appropriate treatment, I believe the science will bear that out and whatever an appropriate treatment may be, will be trialed. Nobody should jump the gun on antiretrovirals, but CBT is just plain wrong as used, and GET is unfathomably sick and wrong for ME patients.
>Just as an aside, and as a comment on the scientific process, the statement earlier that XMRV is linked to prostate cancer would seem to have new literature against it on that one.
Yes, I was aware. I saw the items that referenced this in the study in Germany. I have seen it suggested that not only were different protocols used as compared to the initial study suggesting linkage from, I believe, a couple of years ago...but, also, the initial study targeted a specific, aggressive form of prostate cancer that is relatively rare. I can't speak to the validity of the idea that the two studies are not comparable for this reason, but this is what I have seen. I could provide a link or two pointing to this, but I don't know that it means any more than my suggesting this in this space, without anything in particular to back it up.
>My point is whilst some may be planning entire treatment regimens based on a single positive XMRV paper, it is probably not wise to do so. Yet.
I cannot imagine a reasonable person disagreeing with this. We have a long way to go. But the meeting today was significant and raised many questions in an official forum that I would suggest holds more credibility than the 'militant ME brigade,' or at least the perception of that pejorative description as offered by Dr. Crippen in the first sentence of his piece in the newspaper. Nobody is perfect, but while I'm not necessarily comfortable with the shrill nature of the loudest voices, they do speak for a patient population that has been treated awfully, and they may well be seen as having been correct all along, before very long. What happens then, I don't know; I do believe most CFS/ME patients would have more interest in getting better than seeing events that would amount to a form of revenge. But when you treat someone horribly and unfairly for decades, someone vulnerable and seriously ill, who's to say how a human being will react?
One thing that was mentioned several times today at the CFSAC meeting at the NIH was the issue of the blood supply. It's a horrible possibility to have to point to, but I sure haven't seen anyone come forward to dismiss this as nonsense. If they do, then I gather they have no issue with an XMRV-positive CFS/ME patient donating blood...and accepting that blood. Can't harm anyone if it's all in the head, now, can it?
Philip, I know my posts are long, but isn't it strange that you're the only one taking them seriously at all? Do you acknowledge my points about Dr. Crippen's unwillingness to discuss the issues I raise? Is there any reason you can think of, anything that makes any kind of sense, that would lead him to avoid these new revelations on a topic he has treated the way he has in the past?
I am pleased that I am not your patient. I have a little known and therefore little researched genetic condition known as Ehlers Danlos as does my daughter. No doubt should I have the misfortune of being one of your patients you would be telling me that the pain is all in my head not caused by my faulty collagen. I have a dear friend and also a cousin who are crippled with ME. I cannot provide the lengthy comments as others have done. I am however that I am blessed with a gp who treats me like an individual something I am not sure you would do. Perhaps if you could for a day endure the pain and debiliation that a sufferor of ME or indeed Ehlers Danlos has - you would possibly find yourself a little more humble in your attacks on the genuinely ill. In my humble opinion you should be ashamed of yourself.
re Ehler's Danlos.....it has consistently present, measureable, objective signs, both on examination and in the lab.
If those signs are present in your case, then I expect that Dr C would have no problem with accepting that, despite your best efforts, E-D will still affect your daily life.
Ehlers-Danlos is also the sort of thing hospital doctors learn about for MRCP exams, even if they haven't ever seen a case. My medical other half certainly told me quite a lot about it when it came up in a conversation about a blog I'd been reading (the one linked below, in fact).
There is an interesting blog written by an EDS sufferer here.
Philip, the WPI will shortly be testing antiretroviral drugs.
How many long years will we in the UK have to wait for them? I have already been severely affected with M.E. for 23 years, during which time I have been treated with shocking cruelty and neglect by the NHS, many of whose staff think I am merely malingering.
The xmrv trials in the UK are going to be carried out at Kings College London, where Professor of Psychiatry Simon Wessley works.
Do we have a snowball's chance in hell of this being an unbiased study? Will they even be looking at patients with neurological M.E., or will they be doing their usual sleight of hand and completely excluding them from the study, leaving only people with mild mental disorders who do not have M.E.?
What happens if we pay privately, as many of us will, for the xmrv test and it proves positive?
I'm so sick, sick, sick of the UK medical profession's attitude to my illness. The attitude and the lack of treatment is why the commonest cause of death in UK patients is suicide - followed by cancer and heart disease.
http://abcnews.go.com/Health/PainManagement/retrovirus-found-chronic-fatigue-sufferers-yield-biomarker-therapies/story?id=8950867
Chronic Fatigue Patients: No Longer Fakes?
Virus Found in CFS Patients Might Explain Bone-Aching, Unrelenting Symptoms, Help Find Therapies
In 1982, Cynthia Toussaint, a 21-year-old North Hollywood, Calif., ballerina and actress, had a hamstring injury that wouldn't heal. Her leg pain was so severe, it was like "being doused with gasoline and lit on fire."
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A new study links the XMRV virus to chronic fatigue syndrome.
As her symptoms grew worse, the muscles spasms contracted her right arm and leg so tightly that her limbs "folded up."
Then came the fatigue -- so deep and persistent, Toussaint could barely lift her eyelids on awakening and often would fall out of a chair with sleepiness.
"I was bedridden for a decade and could barely crawl to go to the toilet," she told ABCNews.com. "They said it was in my head -- that I had stage fright or tendonitis from Mars. People said I was making it up."
Toussaint eventually got relief from what was diagnosed as complex regional pain syndrome, but what she believed was chronic fatigue syndrome persisted.
For years, she fought with doctors, her insurance company and other skeptics, who would not believe her illness was real and painted her as lazy, complaining or just plan "nuts."
But now, scientists have identified a retrovirus that may explain the cause of CFS -- a condition once sarcastically called the "yuppie flu."
Since it was first identified 25 years ago, the syndrome often has been considered a sham, and many patients have been referred to psychiatrists when no clear diagnosis was made.
"Once my HMO even asked me to take a truth serum to see if I was lying," said Toussaint, now 48 and founder of For Grace, an organization that advocates for women in pain. "I was so ashamed."
Patients like Toussaint, who say they feel vindicated that their illness is real, are celebrating the news.
Though many in the health field await more proof, investors and medical technology companies are buzzing about the implications of finding a biomarker and possibly an eventual vaccine and treatment.
Between 1 million and 4 million Americans suffer from CFS, according to the Centers for Disease Control and Prevention. At least one-quarter of those are impaired enough to be unemployed or on disability.
This research, announced this month in the journal Science, was led by Judy Mikovits, a 22-year veteran of the National Cancer Institute and retrovirus expert at Reno, Nev.'s Whittemore Peterson Institute.
She reported 68 out of 101 CFS patients were infected with the contagious xenotropic murine leukemia virus, or XMRV. By contrast, only 3.7 percent of 218 healthy people were infected.
After the paper was published, her work showed that 98 percent of 300 patients tested positive for the retrovirus, which was found in fresh blood and plasma, as well as saliva.
XMRV also has been associated with prostate cancer, and some leukemias and lymphomas. Retroviruses carry their genetic information in RNA rather than DNA, inserting themselves into their hosts' genetic material, where they stay for life.
Although CFS only occurs in about 4 percent of the population, many more asymptomatic Americans could be carriers.
"The study is intriguing," said Dr. Joshua Prager, director of the California Center for Rehabilitation of Pain Syndromes. "There could be a sampling error, but there is hope. If, in fact, there is a marker for the disease, it is something that is truly treatable.".......
.......cont
The CDC is specific in its diagnostic criteria: Patients must exhibit unexplained fatigue that is not related to exertion and cannot be relieved by rest. At least four other symptoms also must be present for six months of more, including impaired memory, unrefreshing sleep, muscle aches, joint pain, headaches of a new kind, sore throat or tender glands.
Rivka Solomon's battle with CFS began two decades ago at the age of 21 when she and two best friends contracted infectious mononucleosis.
"They were sick for a week and I was bedridden for a year," said Solomon, now 47 and founder of the Boston-based women's empowerment group, That Takes Ovaries.
Seven years later, her symptoms intensified after a bout with "walking pneumonia," and she was forced to give up a career in international politics and to confine her work to writing a book about her pain.
"It's unrelenting fatigue and comes with non-restorative sleep," she told ABCNews.com. "You are damned exhausted all the freaking time. It's a deep, to-the-bone exhaustion.
"I feel like taking a shower," she said, "but putting my arms up to wash my hair is too much work. And it doesn't ever go away."
Like Toussaint, Solomon experiences a "brain fog," which feels like "you are thinking through a thick cloud of pea soup," and chemical and perfume smells make her "dizzy and wacky."
The very name itself is a stigma, according to Solomon: "It's so pathetic, like calling Parkinson's 'shaky person syndrome.'"
The CDC has called the new CFS research exciting, but preliminary.
"If I don't know the nature of the cases and controls, I can't interpret the findings," Dr. William C. Reeves, who directs public health research on the syndrome, told The New York Times.
"We and others are looking at our own specimens and trying to confirm it," he said. "If we validate it, great. My expectation is that we will not."
The CFS debate goes back to an outbreak in Lake Tahoe, Nev., in 1984. Several hundred patients developed flu-like symptoms, fever, sore throat, headache and neurological problems like memory loss. .......
....cot
The CDC dismissed the epidemic at the time, even though the patients were infected with several viruses, and suggested these were psychiatric problems, according to Hillary Johnson, the author of "Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic."
The name was coined in 1987 and "functioned as kind of a social punishment," Johnson said in an op-ed piece for The New York Times. CFS, which now carries the scientific name X-associated neuroimmune disease, is associated with a high suicide rate.
In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 her patients with chronic fatigue. Some of them also had rare forms of cancer.
The CDC tried to replicate her efforts, but ended research prematurely and later criticized her work. The CDC acknowledged in 1999 that it had diverted millions of dollars allocated by Congress for CFS to other programs.
But at about the same time in the 1990s, University of Miami researcher Dr. Nancy Klimas pioneered lymph node extraction therapies for what was then called chronic immune activation syndrome.
Now, drug companies are taking an interest in her work treating eight patients with reverse transcriptase inhibitors, antiretroviral drugs similar to those used today in HIV/AIDS patients.
"They went from very ill to much, much improved," said Klimas, who now directs the Gulf War Illness and Chronic Fatigue Syndrome Clinic at the Miami Veterans Affairs Medical Center.
One company that hopes to find new therapies with Klimas is Ohio-based Neo Probe, which explores activated cellular therapy technology to treat cancer, as well as viral and autoimmune diseases.
According to Frederick Cope, vice-president for pharmaceutical research and clinical development, the one "lingering question" is whether Klimas' sequencing matches those done in the Reno research.
"I wouldn't necessarily assume that it is," Cope said.
Another is getting more information on the long-term effect of this therapy, "not only that is safe, but that it is effective."
But Klimas said, "It's exciting to be excited. It's been a tough field to be in. Like Rodney Dangerfield, we don't get no respect."
The research also may bring new insight into other diseases like Gulf War illness, autism and even schizophrenia.
Klimas understands the urgency in finding vaccines and treatments.
"I take care of HIV patients all day and chronic fatigue patients another day," she said. "Between the two, the CFS ones are the more miserable. Most of my HIV patients are hale and hearty. My CFS patients cannot even participate in the care of their own families."
But no one is more excited than the CFS patients themselves.
"The news completely changed my life," said Solomon. "There's a skip in my walk because, for 20 years, even though no doctor ever discounted me, it's been a real burden and embarrassment. It means there is hope."
"[Chronic fatigue syndrome] doesn't kill you like HIV/AIDS did before treatments, but it really does limit you. You have a very small life," she said. "Now we can focus on strategies and maybe I can get my life back before I am dead."
Hmmm...this statement given by a representative, Jerry Holmberg, of the Office of Public Health and Science, a unit of the Department of Health and Human Services, just read a little while ago during today's 2nd day of meetings of the Chronic Fatigue Syndrome Advisory Committee...this must be the quackery Dr. Crippen was referring to when he chose that tag for this post.
Yes? No?
The good doctor seems to be unavailable. That's okay; move on, nothing to see here. Oh, yeah...
"The Office of Public Health and Science’s Blood Safety and Availability is aware of the recent literature suggesting linkage of chronic fatigue syndrome to a possible contagious rodent retrovirus, XMRV. XMRV has also been associated with an aggressive form of prostate cancer. Antibodies against the virus have been detected in 3.7% of healthy controls in a study of a small number of individuals. Currently there is no commercially available test for infection with XMRV. While there is no known association of CFS or prostate cancer with history of transfusion, the finding that the virus is associated with white blood cells has led some to question whether XMRV could be transmitted by transfusion and might therefore pose a threat to the health of blood recipients and potentially also transplant recipients.
"The HHS Blood Safety Committee works with all the PHS agencies (i.e., CDC, FDA, HRSA, and NIH) to ensure the safety and availability of blood products as well as transplantation safety. Under the leadership of that committee, steps are being taken to investigate the blood safety threat from XMRV and the potentially protective role of white cell removal, which is performed on approximately 70% of blood. An interagency Emerging Infectious Diseases working group that reports to the Blood Safety Committee is currently assessing the literature on XMRV, conducting meetings with experts on this retrovirus, and interacting with groups that could study the question of blood safety. A report is expected within several weeks. In particular, the National Heart Lung and Blood Institute Retrovirus Epidemiology Donor Study-II (REDS-II) investigators are aware of the report in Science and are assessing the prevalence of XMRV in blood donors to determine whether studies aimed at evaluating transfusion-transmission rate are warranted using NHLBI’s repositories of donor and recipient blood samples.
"HHS will remain vigilant in assessing the safety of the blood supply and developing interventions as appropriate."
This meeting is in their lunch break as I type this, but will return shortly for the final block of discussion.
Live webcast, will be archived, requires RealPlayer
How dare the militant ME Brigade dare challenge the definitive certainty of the Oxford Definition or NICE Guidelines.
How sad that Philip alone has been willing to engage in anything resembling a meaningful discussion.
Given the potential (does that word imply militancy? just asking) ramifications--which, I assure you, it brings me no joy to keep repeating simply to get across how unbelievably wrong-headed the views of so many physicians in the UK seem to be when it comes to this illness--one would think Dr. Crippen would have chosen to make a statement, offer an opinion, attempt to debunk (he could know more than the HHS, after all, and, truth be told, the potential risk could be minimal or even nonexistent, for reasons beyond my understanding)--anything.
Well, who knows--you know, he could well be too busy to weigh in. One always has to be willing to give one the benefit of the doubt; one never knows another's circumstances on the web.
But it is worth pointing out how much time & effort Dr. Crippen has found in the past to editorialize on the topic. Maybe he just wasn't busy then.
some of the CFSAC meeting is now on youtube:
http://www.youtube.com/profile?user=Khalyal#p/u/4/JIlqxT-bl_w
do watch these, Dr Crippen, you might learn something!
Three Chord Monty et al.
Even if this research pans out (and it is a very, very, big "if" at this stage) it is surely pretty unlikely that ALL patients with diagnosed ME will turn out to have an organic illness.
Many doctors I have talked to routinely offer the opinion that a subgroup of ME patients "could well have an unknown organic disease". I have even seen Dr Crippen write this.
But that doesn't mean "all".
Equally, I have never spoken to a doctor who doesn't think some ME patients have "somatisation problems". Though the ones I know definitely do not equate that automatically to "mentally ill".
But the main point was that it is far too early to tell anything from the Science paper, other than that it looks interesting and needs urgently following up.
Scientists get a lot of bad press for saying "more research is needed" , but it is really true here. We need the report confirmed (or not) from other centres, with different samples and different methods, for a start. Then we need more data.
Given the interest this report has generated, I think this "more research" is now more likely to get done, which should please you. But the results are not predictable at this stage. That is how science works. The post from "Anon 3.30 pm", though, suggests rather worryingly that some of the ME community has already decided that a negative XMRV result up the line will by definition be a conspiracy. That way lies disaster, and potentially the kind of descent into quackery that has befallen autism with the "biomedical cure" movement. I hope you can stay open-minded. And meanwhile the scientists and doctors will, I predict, try and do the same.
Dr Aust,
Do you not have any scientific problems with the concept of 'somatisation' itself?
Basically, the concept of somatisation goes like this: Failure to explain adequately under a biomedical model leading to default diagnosis of psychosomatic; Reasonable responses to severe illness and objections to being told it's AIYH are then themselves reconstructed as evidence of psychopathology allegedly causing the illness. If you object to a doctor's faulty attribution of your illness - you are then further constructed as a 'somatizer'.
This is actually what the criteria for DSM require for a diagnosis of 'somatisation'.
'Somatisation' itself, even as constructed in the latest DSM, is based on circular logic not unlike the witch finding logic of centuries past, with a soupcon of magical voluntarism thrown in, and a lot of covering up of 'I don't know'(firstly because somatisation has, as its first criteria, 'medically unexplained', another can of worms, and secondly the physiological mechanisms of the construct of 'somatisation' has never been adequately scientifically elucidated).
It's all very well asking others to be 'open-minded', but here we're talking about rank irrationality, BY doctors and others claiming to be 'scientists', and other doctors swallowing that irrationality hook, line and sinker. Whole swathes of literature have been published based on those sorts of fallacies. And I haven't even scratched the surface here of other problems with claims around psychiatric causation of physical illness.
Whatever the ins and outs of the XMRV research, it's extremely hard to be preached to about being scientific and open-minded when absurd concepts like somatisation are given such an easy ride by the medical profession.
One of the Anonymouses (sp?) wrote:
"The xmrv trials in the UK are going to be carried out at Kings College London, where Professor of Psychiatry Simon Wessley works."
In order that this information can be verified, would you please provide a source for this statement?
The following may be of interest:
http://www.findaphd.com/search/showproject.asp?projectid=18971
Dept/School Division of Infection & Immunity, University College London (UCL)
Project Supervisor(s)Prof G Towers
Dr P Kellam
Application Deadline 23 November 2009
A role for XMRV in human disease
Laboratory supervisor: Prof Greg Towers, Clinical supervisor: Prof Deenan Pillay
------------
Notice on (US) CFIDS Association site:
http://www.facebook.com/note.php?note_id=197188195538
XMRV Blood Safety and Availability from HHS
Xenotropic Murine LeukemiaVirus-Related Virus (XMRV)
Blood Safety and Availability
Office of Public Health and Science
Department of Health and Human Services (HHS)
Jerry A. Holmberg, PhD, SBB
October 30, 2009
------------
And where is John Crippen?
Suzy Chapman said "And where is John Crippen?"
****
Is it a case of "Light the blue touch paper and stand well back"?
Dr Crippen has cut back on his blogging, which is reflected in his weekly cut-down column in the Grauniad.
Just to add to what Suzy Chapman just posted: the XMRV project alluded to is based at UCL, which is NOT where Prof Simon Wessely works. And the lead person is Professor Deenan Pillay, a noted retroviral expert and nothing whatsoever to do with psychiatry.
I pretty much guarantee that retroviral labs worldwide will now all be reading or have read the Science paper. I saw a US infectious disease expert somewhere predicting "an avalanche of further studies", and I think that is likely. But I repeat, again: the results are NOT a foregone conclusion.
Science in general is full of eye-catching preliminary results that turned out to be wrong, and papers published in "high impact" journals like Science and Nature do not have any exemption from this. If anything, it happens more with what they publish, because what they are putting out is right at the cutting edge. So the XMRV result is provisional until confirmed, and all the excitement around it is therefore, in a scientific sense, highly premature.
Which arguably is what Dr C said in the first place, though in his own way.
I understand that the xmrv tiral referred to will take patients from St Barts, where Peter White is professor of psychiatry.
If this is true, then the patients will have been selected by the Oxford criteria (invented by the psychiatric profession to include large numbers of patients with mental disorders such as mild depression) instead of the Canadian criteria. They will not have neurological M.E. as classified by the World Health Organisation. The trial will be a complete farce.
Nothing new there then in UK funded ME research. The PACE and FINE trials are already complete farces.
Anonymous wrote:
"I understand that the xmrv tiral referred to will take patients from St Barts, where Peter White is professor of psychiatry.
Again, could we please be given references for statements like these? If you are not confident that your source for this information is solid, how helpful is it?
@ Anonymous
First you've told us that the "xmrv trials" are going to be carried out at Kings College London.
The project, below, is being supervised at UCL not KCL.
Now you've told us that "I understand that the xmrv tiral referred to will take patients from St Barts, where Peter White is professor of psychiatry...
Which XMRV "trials" are you referring to and what is it that is being "trialled"? Or are you just repeating speculation from message boards?
Below is an outline of the UCL PhD XMVR project.
http://www.findaphd.com/search/showproject.asp?projectid=18971
Dept/School Division of Infection & Immunity, University College London
Project Supervisor(s) Prof G Towers Dr P Kellam
Funding Availability Competition Funded Project (European/UK Students Only)
Application Deadline 23 November 2009
A role for XMRV in human disease
Laboratory supervisor: Prof Greg Towers
Clinical supervisor: Prof Deenan Pillay
Xenotropic murine retrovirus (XMRV) has recently been associated with chronic fatigue syndrome as well as prostate carcinoma in humans (1-3). XMRV is a murine endogenous virus found in the genome of mice and until recently has been thought to be absent from the human population. It is now becoming clear that XMRV has transmitted to humans by a process of zoonosis, presumably from mice, and appears to be associated with a variety of diseases not previously associated with viral infection.
1. We will establish quantitative PCR assays and serology assays including enzyme linked immunosorbant assays (ELISA) to detect and quantify XMRV. Importantly, assays used to detect related murine leukaemia viruses in the lab are expected to be suitable.
2. We will use these assays to measure XMRV load in chronic fatigue patient samples as well as, well but XMRV infected control samples, with a view to establishing whether viral load relates to disease, episodes of illness and/or severity.
3. The receptor for XMRV has been identified. We will seek human polymorphism in the xenotropic receptor and assess which human cells express it. We will also establish which cells in vivo in blood express the receptor and which cells are infected with XMRV by quantitative PCR on sorted subsets of B and T cells from XMRV infected individuals.
This project proposes to address some of the most important questions surrounding the recently described XMRV infection of humans and to seek a therapeutic strategy for XMRV treatment. We expect it to be a competitive project and the experiments performed are likely to be influenced by ongoing studies published as we go. We expect that the candidate will be fully trained in modern techniques of molecular virology during the course of this project.
TO APPLY Send THREE COPIES of your CV (including full contact details of two academic referees) a personal statement and an indication of your top two preferences, on a separate page, from the list of projects below to:
Isabel Lubeiro, Division of Infection & Immunity, Windeyer Building, 46 Cleveland Street, London W1T 4JF.
CLOSING DATE: 23 NOVEMBER 2009
[Ends]
@ Dr Aust and Philip
You'll have to excuse me guys, but I have a bit of a thing about accuracy, verifiable sources, references and so forth.
If you've skimmed John's previous postings around ME, you might have spotted that he's fond of calling me an "anal pendant", but dammit - when you maintain a website and are publishing under your own name a girl can't be too careful, as I'm sure you'll appreciate.
Anyhoo, "Anonymous", when you've got a heads-up for me on confirmed UK XMRV research studies with the names of supervisors, PIs, collaborators, criteria, protocols etc, I shall be all ears.
LOL!
That should of course have read
"anal pedant" not "anal pendant"!
thanx for this nice blog and please let me take a copy to my sites
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From the Reno Gazette-Journal:
The world's largest pharmaceutical companies have been calling the institute asking if they can test their lines of a drug now used to treat patients with HIV, another retrovirus, to see if their anti-viral drugs can be adapted to treat Chronic Fatigue Syndrome patients.
"They want us to send them the (XMRV) retrovirus so they can screen huge libraries of compounds and see what they have that could work," Mikovits said. "They already have drugs to treat HIV, so they could redesign a compound for the XMRV virus. Since they already have FDA approval, they could get something out to people fast."
Among the drug companies lining up are LabCorp and Quest, two of the largest diagnostic companies in the world, Mikovits said.
The drug companies will pay for the Reno institute's cell lines, the established cultures that will grow the XMRV retrovirus so they can test their antiviral drugs on them, she said.
http://www.rgj.com/article/20091101/NEWS/911010342/1321/Medical-breakthrough-puts-Reno-in-spotlight
"What makes this especially exciting is patients, who basically have been ridiculed and poked fun at for having a disease that has been given very little credibility, finally would have hope," Lombardi said. "And it could lead to real treatment strategies."
got that, 'Dr Crippen'?
*Sigh*
One tires of repeating this, but:
It is early days, and the link between XMRV and ANY disease is not established.
If you want a cautionary tale (and there are many), try viruses as possible causes of multiple sclerosis.
The language of many of those involved in this latest CFS / XMRV study is optimistic. That is no surprise - they obviously hope they have made a key breakthrough. The patient groups hope so too, and the PharmaCos ditto if it means there will be a definite viral "target" to aim at. But the optimism is not in and of itself proof that it is all going to turn out to be true.
Dr. Aust, I think we all know this could pan out to be nothing. However, for now, I can't imagine anyone, layman or professional, in good faith denying that this is a significant finding, at least pending further study. Yet Dr. Crippen's piece and subsequent remarks are focused primarily on the element of the story that relates to patients he believes are not genuinely suffering from a physical disease rather than those he has come to slowly view over time who actually are.
I do question why a GP reducing his blogging time is more interested in 'the militant ME Brigade' than the implications of the findings at large.
I cannot defend certain aspects of the militancy of the activists, but I can say with no small confidence that if I were treated as UK patients diagnosed with ME are treated, I might engage in words and behaviors that might well seem questionable. If you put yourselves in the shoes of a patient treated in this fashion, you might well do the same. Do you think you would be immune to proclaiming loudly that your condition is physical? Do you think Crippen would? Wessely?
Tiring of the optimism may be a reasonable response on your part--but your bolded sentence may well be an overreach no less significant than the optimism you are tiring of. We'll have to wait for more research, and some will be less patient than others.
My point about where Crippen chose to focus the limited amount of time and effort he was willing to put into covering the topic stands.
"Sigh"
One tires of repeating this, but:
The idea that ME sufferers are malingerers, somatizers, etc. cannot be proven. In fact, the idea does not have good empirical support, has never been adequately elucidated, let alone tested scientifically, and is full of flaws with regard to both theory and methodology.
Furthermore, The idea of a 'Militant ME brigade' is a straw man constructed by Crippen. You might as well say Crippen, and Dr Aust, are "militant somatization supporters". It wouldn't make sense, but then neither does the Crippen straw man.
Silver Wellies - I would be interested in what you think of the following speculation:
Perhaps people who use the label ME/CFS are v diverse and each one includes one or more of the following issues .....
- Some have a physically caused medical condition that is not yet identified
- Some have a subconsciously developed need for a disabling condition
- Some are malingerers
I can't see a flaw in this argument as somatisation and malingering DO occur in the whole population, so why would people with a label of ME/CFS be exempt?
The nub is what percentage of people with the ME/CFS label fall into which category?...and how is it possible for a medic to work out which category an individual is in?
It has been reported on several message boards that at the October meeting of the All Party Parliamentary Group on ME, Mr Colin Barton (Chair, Sussex and Kent ME and CFS Society) had stated that patients from Barts were to be involved in (unspecified) XMRV studies.
I have contacted Mr Barton, this morning, for confirmation of these reports.
I am advised by Mr Barton that Barts have no immediate plans to replicate now as two other London groups are already doing this, as well as the CDC.
Mr Barton was unable to confirm whether the "two other London groups" included the UCL PhD project, supervisors: Prof G Towers and Dr P Kellam.
In October, Dr Jonathan Kerr (St George’s University of London) was awarded funding by the US NIH's National Institute of Allergy and Infectious Diseases.
I have no further information on UK replication studies and no information on "trials".
Press Release, below, in two parts with apologies if this has already been posted:
Part One:
http://www.prohealth.com/library/showarticle.cfm?libid=14948
NIH Bets $1.6 Million on Continued ME/CFS Research by Drs. Mikovits & Kerr October 21, 2009
Dr. Judy Mikovits (principle investigator) and the Whittemore-Peterson Institute, with collaborator Dr. Jonathan Kerr, have been awarded a 5-year, $1.6 million grant from the NIH's National Institute of Allergy and Infectious Diseases (NIAID) to support ongoing research into the disease mechanisms of chronic fatigue syndrome. Dr. Kerr is associated with St. George's College in London.
The award was announced Sep 24 on the WPI website, before news of the CFS-associated XMRV retrovirus was published Oct 8 by the journal Science.
A description of the project (# 1R01AI078234-01A2) is now included in the NIH's Research Portfolio Online.
Key Details from the NIH's Project Description
. Title: "New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome."
. Objective: "To provide significant insight into the disease mechanisms of Chronic Fatigue Syndrome so accurate testing and specific treatments can be developed with a goal of curing the disease and preventing life-threatening complications."
. Timing: start date Sep 28, 2009; projected end date, Aug 31, 2014.
. Funding: First fiscal year funding $335,600; total funding $1.6 million.
. Project Description provided by applicant: (excerpt formatted for greater legibility, as follows).
______________________________
"Chronic Fatigue Syndrome (CFS) is a complex disease estimated to affect between 0.5%-2% of the population in the Western world.
Its pathogenesis is thought to involve both inherited and environmental(including viral) components, as with other chronic inflammatory diseases, such as multiple sclerosis, rheumatoid arthritis, and atherosclerosis.
Consistent with this chronic inflammatory context, CFS patients are known to have a shortened life-span and are at risk for developing lymphoma. We hypothesize that chronic inflammatory stimulation from active and recurrent infections of multiple viruses on a susceptible host genetic background leads to the pathogenesis characterized by CFS.
The overall goal of this research project is to define these viral and host parameters in European and American cohorts of CFS patients that correlate with distinct disease phenotypes, including the development of mantle cell lymphoma (MCL) in a subgroup of the American cohort.
In Aim 1) we will identify and confirm novel viral infections in European and American CFS patient cohorts.
[continued in next comment]
Press Release Part Two:
1.1) We will use two complementary methods for detection of novel virus mRNA: massive parallel signature sequencing (MPSS) and a custom DNA microarray.
1.2) Quantitative polymerase chain reaction Q-PCR will be used for
confirmation of virus gene expression.
1.3) Immortalized cell lines will be developed to isolate virus and
elucidate links between virus and host cell gene expression.
In Aim 2), we will elucidate genetic factors of susceptibility and the dysregulation of the host defense system. Specifically, we will determine:
2.1) PBMC gene expression of 88 human genes previously confirmed as being differentially expressed in CFS
2.2) Serum chemokine and cytokine profiles using multiplex suspension antibody arrays on a Luminex platform
2.3) HLA, KIR genotypes and whole genome SNP profiles
2.4) Defects in the type I Interferon signaling pathway.
In each subaim both cohorts will be compared to normal and disease controls using specimens of serum and PBMC taken at multiple time-points from individual patients and taken from our unique and extensive sample repository.
This study:
. Will provide information necessary for development of treatment and diagnostic strategies for distinct subgroups of CFS patients,
. And may identify novel virus associations, genetic signatures, and biomarkers, which can predict the development of MCL, thus enabling use of preventive therapeutics."
[Ends]
"Silver Wellies - I would be interested in what you think of the following speculation etc."
Ok- well, firstly, it's not that ME/CFS sufferers are being claimed by me as exempt from mental health problems or malingering. The problem is that there is special pleading by some that they are MORE likely to be so, based purely on the uncertainties of medical knowledge about the illness and a rhetorical campaign by some psychiatrists. This is not a logical position to take- yet take it many in the medical profession do.
While malingering might be present in some people presenting with ME/CFS signs and symptoms, the same could go for a lot of illnesses. Again, it's the special pleading that's the problem, the default belief in 'AIYH'.
Your claim that somatisation DOES appear in the whole population is unsafe, because the construct of somatisation is unsafe, as is somatoform disorders, hysteria, neurasthenia, conversion disorder etc. They are metaphysical explanations that cannot be elucidated or verified within physiological paradigms, and certainly not to the extent of physiological impairment experienced in the ME/CFS population. Yet- they are swallowed as 'truth': "Somatisation... DO occur in the whole population" said with such certainty, based on such poor evidence bases and theoretical uncertainties. Your idea of somatisation being a 'subconscious need for a disabling condition' is itself impossible to elucidate scientifically, indeed comes across as merely a belief in 'unconscious' malingering, something that cannot be elucidated or verified in science, currently, and possibly ever. Somatisation, again, is based on default metpahysical explanations for illnesses for which there is uncertainty- that is one of the criteria for somatisation. Psychological distress is another- even where such is a RESPONSE to the illness. Refusal to accept AIYH explanations constitutes another, even though that is a perfectly rational position for a patient to take. It's amazing really, that amount of circular reasoning is allowed to pass for 'science': and puts me in mind of the glory days of witchfinding.
It is this irrationality, among many other problems I've briefly touched upon previously, that makes the scepticism facing the XMRV discoveries worryingly inconsistent. Certain people are promoting a default AIYH causation to CFS until proven otherwise, even though the research results for the XMRV connection, even at this stage, are sigficantly more robust than the claims of the psychiatrists about CFS being caused by 'psycho-social factors' (including that claiming 'child trauma'). My concern is that there should be a high level of rational scepticism about 'somatization' and it's synonyms in the medical profession, who pride themselves on their scientific and logical approaches, but there is not. Why not?
Lastly, no matter how difficult, medics have an ethical duty not to cause iatrogenic harm to patients by psychogenic dismissal. So my advice, as a non-medic, is to refrain from jumping on a malingering/somatization explanation for the person presenting with signs and symptoms you cannot explain without difficulty. Don't treat your patients with elusive presentations as deluded or benefit scroungers by default, basically. I hope that doesn't offend medics here. But currently they seem to be encouraged to do exactly that, which is worrying.
"The language of many of those involved in this latest CFS / XMRV study is optimistic. That is no surprise - they obviously hope they have made a key breakthrough. The patient groups hope so too, and the PharmaCos ditto if it means there will be a definite viral "target" to aim at. But the optimism is not in and of itself proof that it is all going to turn out to be true."
You'd be optimistic about xmrv research too Dr Aust if you had the neurological illness M.E. & the medical profession had treated you as a piece of malingering pond life for decades, despite your unrelenting, debilitating, frightening and painful symptoms.
Far too many M.E. sufferers have committed suicide because of the medical profession's abusive & contemptuous attitude toward them.
Pour cold water on the only bit of hope we have of being taken seriously and of a cure all you want to, but you won't stop the optimism.The drug companies are already involved - that's big money.
John,
Can I ask for clarification on something please.
In your piece in the Guardian you say that you think a third may have a physical illness currently known as ME/CFS, a third may have a mental health illness and a third may be malingerers.
Given there is a figure bandied around of an estimated 250,000 people with this diagnosis in the UK that means that roughly 80,000 fall into each of your groups.
Can I ask if you are saying that around 80,000 people with this diagnosis are "pretend(ing) or exagerat(e)(ing) illness to escape duty or work" (OED).
That is quite a serious accusation.
Good Medical Practice: Duties of a doctor
The duties of a doctor registered with the General Medical Council
"Patients must be able to trust doctors with their lives and health. To
justify that trust you must show respect for human life and you must:
* Make the care of your patient your first concern
* Protect and promote the health of patients and the public
* Provide a good standard of practice and care
o Keep your professional knowledge and skills up to date
o Recognise and work within the limits of your competence
o Work with colleagues in the ways that best serve patients'
interests
* Treat patients as individuals and respect their dignity
o Treat patients politely and considerately
o Respect patients' right to confidentiality
* Work in partnership with patients
o Listen to patients and respond to their concerns and preferences
o Give patients the information they want or need in a way
they can understand
o Respect patients' right to reach decisions with you about
their treatment and care
o Support patients in caring for themselves to improve and
maintain their health
* Be honest and open and act with integrity
o Act without delay if you have good reason to believe that
you or a colleague may be putting patients at risk
o Never discriminate unfairly against patients or colleagues
o Never abuse your patients' trust in you or the public's
trust in the profession.
You are personally accountable for your professional practice and must
always be prepared to justify your decisions and actions"
........nothing there about hiding behind anonymity whilst denigrating a quarter of a million patients with a serious neurological illness.
Anon 2.08 pm write:
"Pour cold water on the only bit of hope we have of being taken seriously and of a cure all you want to, but you won't stop the optimism.The drug companies are already involved - that's big money."
Well I agree about the last bit.
As to the other stuff - it is not "pouring cold water", other than in the sense that this is precisely the scientific process - something I note "Philip" already said. Ideas are posited, and then get shot at and their weaknesses identified for testing - "tested to destruction" , if you will. That is the only way that good ideas can be told apart from not so good ones.
As to the XMRV story, time (and more research) will tell. And I never said "it's all rubbish". All I said was "It's way too early to tell".
What on earth else would you expect any scientist to say?
I don't think there is much doubt that "somatisation" as a process exists, but that seems to me to be separate from the defining of a self-standing "somatoform disorder". I have some sympathy (as a non-doctor, so not a medical view, let alone a psychiatric one) for the view SilverWellies articulates that "somatoform disorder" is an ill-defined and circular definition. Of course, there are other examples where it would be harder to avoid the "AIYH reflex", like the people who claim (all evidence to the contrary) to be things like "EMF sensitive".
When I went and had a look at Suzy Chapman's website I came across a report (PDF!) she linked to which looked to my inexpert eye like it represented a useful attempt to try and address this impasse over "somatoform".
It needs to be clarified that the report to which Dr Aust has linked is the December 2007 CISSD "Final Report" that Dr Richard Sykes, PhD, tendered to Action for M.E. on completion of the CISSD Project, of which he had been Co-ordinator. It is an internal report, only, intended for Action for M.E., who acted as principal administrators for the Project and the Project's members. The report has only recently been placed in the public domain by Action for M.E. (last week) and only as a result of pressure to do so in response to the dearth of information previously available about the nature, aims and objectives of this Project, and the membership of its workgroup.
It is a quite different document to the review paper that was published in June 2007 by the Project leads - Kroenke K, Sharpe M and Sykes R in the Journal of Psychosomatic Research (Co-Editor Dr Francis Creed, also a member of the CISSD Project) which has fed into the ICD and DSM-IV revision processes. Several members of the CISSD Project are now members of the APA's DSM-V Task Force and DSM-V Work Group for "Somatic Distress Disorders" tasked to redefine the DSM category for "Somatoform Disorders" (See Journal of Psychosomatic Research: In Press Editorial: Is there a better term than “Medically unexplained symptoms”? doi:10.1016/j.jpsychores. 2009.09.004
Abstract: http://tinyurl.com/jpsychoresMUS
The CISSD Project has been a most contentious issue, as Action for M.E. had sought to keep a lid on the Project's objectives and to obscure who the members of the Project were. I have spent much of this year researching this Project in order to get information out into the public domain.
Dr Aust may not be sufficiently familiar with WHO ICD-10 and the classification of ME and Chronic fatigue syndrome to have spotted a number of significant errors in this document.
Dr Sykes initiated, undertook and received funding for this five year Project on the premise that Chronic fatigue syndrome is not listed in ICD-10. This was a misconception on the part of Dr Sykes which he has recently ceded. Chronic fatigue syndrome is listed in ICD-10: Volume 3: The Alphabetical Index at G93.3, at the same coding as Postviral fatigue syndrome and (Benign) myalgic encephalomyelitis (ICD-10: Volume 1: The Tabular list: Chapter VI). They are all coded at G93.3 under neurological disorders.
So where, for example, Dr Sykes writes:
Page 5
"Despite claims to the contrary, the classification of CFS is still an open issue. CFS and CFS/ME are not mentioned either in the latest edition of ICD (ICD-10), or in the latest edition of DSM (DSM-VI)."
Page 13
""CFS" and "CFS/ME" are not listed in ICD-10 and this leaves room for debate as to how these should be listed."
Appendix B Pages 12 and 13
"CFS and CFS/ME are not listed in ICD-10."
He was mistaken.
On Pages 12 and 13 of the "Final Report" he has also used "G33.3" and "G33.4" whereas the correct codings are "G93.3" and "G93.4".
Dr Sykes had the assistance of a PhD student to help him with his research and the compiling of his reports; he had a 24 member workgroup - almost exclusively researchers and clinicians from the field of liaison psychiatry and psychosomatics. He had Action for M.E. as his administrators. He had Prof Rachel Jenkins, Director of the WHO Collaborating Centre, Institute of Psychiatry, as his Principal Collaborator. Yet not one of these picked up on these errors and challenged him on the basis for his Project.
This afternoon I have discussed with Action for M.E.'s Policy Manager what steps Action for M.E. intends to take to address the significant errors in this document. I have advised that the documents should be pulled and re-issued with an Erratum Note.
For further information on the CISSD Project and the DSM and ICD revision processes see: http://meagenda.wordpress.com/dsm-v-directory/
Dr Aust,
When you say you don't think there's much doubt 'somatisation' exists, what exactly do YOU mean by 'somatisation'?
This is a highly relevant question because firstly, the term means different things to different people, even to different medics. It's a highly unstable concept at best, and therefore unverifiable by SCIENTIFIC testing- and secondly, even if one does accept that there may be some bodily changes caused say, by distress (just ONE, and not the ONLY context in which the term 'somatisation' is used), this does not mean that any IMPAIRMENT difficult to understand in terms of current biomedical knowledge accumulated should be, by default, deemed as 'somatisation', which is currently what happens. People with extremely disabling symptoms (and signs, for that matter) are told they are somatisers, based on the sheer fact the medic doesn't know what's going on.
That is a fundamental fault in medical practice, especially because of the iatrogenic consequences of psychogenic dismissal. But even the fact 'somatisation' cannot be elucidated adequately at the level of physiology, let alone tested, should be enough for doctors to be very careful in how they use the term. The fact they are not, and that both doctors and lay people like Dr Aust- who I now understand is not 'medical'- assert "there is not much doubt somatisation exists" points to a blind spot in rational analysis when it comes to beliefs in 'mind-body' processes. (Please don't take that personally Dr Aust, I'm just trying to show that you haven't established even what you understand by 'somatisation', because the word has been taken for granted and accepted uncritically by many people - you are not alone. I admit - before I started studying this issue, I was in the same boat.)
ME/CFS patients of course are probably the biggest set of casualties from that mindset, and the costs have been catastrophic, especially for the ones who are the most profoundly impaired.
Hemispherx Biopharma Updates Chronic Fatigue Syndrome (CFS) Treatment and
Commercial Application Programs
The Company plans to widen its ongoing clinical programs in CFS by accelerating
collaborations with a consortium of researchers who have just discovered a
retroviral link to Chronic Fatigue Syndrome (please see October 8, 2009, online
issue of Science). A clinically validated test to detect retrovirus antibodies
in patients plasma is also currently under development (please see US National
Institutes of Health at:
http://www.cancer.gov/newscenter/pressreleases/CFSxmrv). With the consortium of
researchers at the Whittemore Peterson Institute, the Company is also now
evaluating the defect in immunosurveillance in specific subsets of CFS patients
in a clinical study entitled "Therapeutic Activation of NK lymphocytes to
Alleviate Chronic Fatigue Syndrome." These immune defects may be due to the
previously undetected retrovirus.
The Company also plans to complete all outstanding queries from the FDA
regarding its New Drug Application (NDA) for Ampligen(R), an experimental
therapeutic, during November and December, 2009. On May 26, 2009, the Company
announced a delay on the Ampligen NDA which, at the time, had a PDUFA date of
May 25, 2009. As noted in the 10-Q and 10-K filings at the time, the FDA did not
request additional information from the Company at that time. However, several
outstanding NDA items, requiring Hemispherx responses, existed at the time of
the FDA delay as noted in the August 8, 2009, 10Q filing. Between March 9, 2009
and September 15, 2009, the Company issued six (6) new reports to the Agency
spanning various subjects including a) clinical safety assessments, b)
specialized pre-clinical toxicology reports, and c) abbreviated chemistry and
manufacturing control reports. The Company believes that these reports may fully
retire all Agency queries in these particular areas.
The Company also plans to submit four (4) additional reports on interrelated
topics in November and December, 2009, which will include pharmacokinetic
analyses in multiple lower animal species (primates, rodents, etc.) ("the
Lovelace Laboratory Studies") and final validation reports of certain
manufacturing procedures conducted at an independent facility, Hollister-Stier
Laboratories in Spokane, WA. Some of these reports were recently cited in
BioMedReports.com and the Science Business Exchange (October 15, 2009).
About Hemispherx Biopharma
Hemispherx Biopharma, Inc. is an advanced specialty pharmaceutical company
engaged in the manufacture and clinical development of new drug entities for
treatment of seriously debilitating disorders. Hemispherx's flagship products
include Alferon N Injection(R) (FDA approved for a category of sexually
transmitted diseases) and the experimental therapeutics Ampligen(R) Oragens(R),
and Alferon LDO. Ampligen(R) and Oragens(R) represent experimental RNA nucleic
acids being developed for globally important debilitating diseases and disorders
of the immune system. Hemispherx's platform technology includes large and small
agent components for potential treatment of various severely debilitating and
life threatening diseases. Hemispherx has in excess of 50 patents comprising its
core intellectual property estate and a fully commercialized product (Alferon N
Injection(R)). The Company wholly owns and exclusively operates a GMP certified
manufacturing facility in the United States for commercial products. For more
information please visit www.hemispherx.net.
About Whittemore Peterson Institute
The Whittemore Peterson Institute for Neuro Immune Disease exists to bring
discovery, knowledge, and effective treatments to patients with illnesses that
are caused by acquired dysregulation of both the immune system and the nervous
system, often resulting in lifelong disease and disability. www.wpinstitute.org.
http://www.reuters.com/article/pressRelease/idUS124102+02-Nov-2009+GNW20091102
Dr Aust, in case you are wondering what Dr Richard Sykes' background is: Dr Sykes, now in his 70s, is not medically trained, neither is he a clinical or research psychologist. His background was philosophy and academia. He later trained in social work, eventually setting up "Westcare UK" which provided counselling and psychosocial approaches to the management of "CFS" until it was absorbed by Action for M.E., in 2002, when Dr Sykes ceased his Westcare UK directorship.
Dr Sykes had had a couple of papers published prior to the CISSD Project review around psychosocial management of CFS and philosophical discussion around mind/body dualism.
This five year retirement project was a personal initiative funded by Dr Sykes' brother, Sir Hugh Sykes, through Sir Hugh's Charitable Trust, with the funding being channelled through Action for M.E. So the Project was accountable only to Dr Sykes, his administrators and his funder. And it was very insular: there was no stakeholder consultation. Dr Sykes did not approach other ME charities for their involvement and the only patient representative was someone who had co-authored a book on CFS with Professor Michael Sharpe, the Project's UK Chair.
So although the project was said by Dr Sykes and Action for M.E. to have been instigated in the name of, and for the benefit of the ME community, the ME community was in fact entirely disenfranchised from it, having no input into informing its aims and objectives, its scope, or who would comprise its workgroup. Had other patient organisations and the ME patient community been approached for involvement, Dr Sykes' misconception that the WHO did not include Chronic fatigue syndrome in ICD-10 and his premise that "...this leaves room for debate as to how [CFS and "CFS/ME"] should be listed" would have been spotted immediately and the basis for this project challenged.
The Project was instigated as "a multidisciplinary and international project, which is reviewing conceptual issues in the classification of somatoform and similar disorders...and will submit a report to the World Health Organisation and the American Psychiatric Association by the end of 2006, making recommendations for the revision of the current classifications of somatoform disorders" with the aim of stimulating "a multidisciplinary dialogue about the taxonomy of somatoform disorders and the medical diagnoses of functional somatic syndromes (e.g., irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia).
But the membership of the workgroup was drawn exclusively from clinicians and researchers from the field of liaison psychiatry and psychosomatics. Nowhere in the internal reports prepared for Action for M.E. and for the CISSD Project members, or in the review paper published by the Project leads, does Dr Sykes actually set out what he understands by the terms "CFS" or "CFS/ME" or "ME" or "PVFS".
There is no discussion in the published review paper of existing ICD classifications, and the revision of ICD, per se, is barely mentioned - the paper is DSM centric. There are no references in the review paper to biological research into the aetiology and treatment of ME and CFS.
Given that Dr Sykes obtained over £60,000 of funding to look into classificatory issues around "somatoform and similar disorders" is it not remarkable that in relation to CFS and "CFS/ME" and "ME" his own use of terminology is so ill-defined and that he failed to establish accurately current ICD codings or include discussion of these in the review paper published in the Journal of Psychosomatic Research?
Dr Sykes appears to have spent five years in a philosophical bubble isolated from the patients in whose name this project was launched. He is now engaged in a new project - the "MUPSS (Medically Unexplained Symptoms and Syndromes Project".
Field trials for revised DSM-V categories were expected to start this October. Dr Sykes has published no commentary on current DSM proposals.
I need to make a correction:
The review paper published by the lead members of the CISSD Project, full text available here:
http://psy.psychiatryonline.org/cgi/content/full/48/4/277
Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations. Kurt Kroenke, M.D., Michael Sharpe, M.D., and Richard Sykes, Ph.D. Psychosomatics 48:277-285, July-August 2007
was published in the July 2007 issue of Psychosomatics.
The Journal of Psychosomatic Research had published a brief article: The draft report of the CISSD project, Sykes RD in 2006 and also half a dozen papers by various authors which originated out of the first CISSD Project workshop.
Chronic Fatigue Syndrome Education in the United States
Testimony for the Chronic Fatigue Syndrome Advisory Committee
October 30, 2009Chronic Fatigue Syndrome Education in the United States
Testimony for the Chronic Fatigue Syndrome Advisory Committee
October 30, 2009
Kenneth J. Friedman, Ph.D.
Treasurer of the International Association of Chronic Fatigue Syndrome/ME
Director of Public Policy for P.A.N.D.O.R.A., Inc.
Scientific Adviser to Lifelyme, Inc.
Board Member and Chair of the Medical Student Scholarship Committee, New Jersey
Chronic Fatigue Syndrome Association
Board Member, Vermont CFIDS Association
Good morning!
My name is Kenneth Friedman and I am a medical school professor.
I have been asked by the IACFS/ME to comment upon the status of Chronic Fatigue
Syndrome education in the United States.
Comments on The Academic, Medical School Environment
The Director of the Office of Ethics and Compliance of my employer has informed
me that my off-campus activities related to CFS which include: testifying
before this Committee, serving on this Committee, providing continuing medical
education courses, establishing medical student scholarships and assisting with
healthcare legislation are not part of my responsibilities as a University
Professor. I am told that I will be punished with a penalty as severe as
termination of my employment for these activities.
I am not a unique target. Colleague Ben Natelson has left the same school. A
different medical school has refused to permit access to their medical students
to discuss CFS or inform them of a medical student scholarship. A statewide
health care provider, with no physician capable of managing CFS patients refuses
to permit a CFS training session for their physicians. The failure of the CDC
to convince the medical-academic establishment of the legitimacy of CFS, and the
urgent need for its treatment, has created this environment.
Comments on Medical Student Education
High ranking officials of medical education have testified before this Committee
that they are powerless to control the curriculum of medical schools, and cannot
mandate the inclusion of Chronic Fatigue Syndrome in the medical school
curriculum.
Were the CDC to mandate the reporting of CFS to the Federal Government, as it
does for other illnesses, the National Board of Medical Examiners would have no
choice but to put CFS questions on the National Boards. If CFS questions were
to appear on National Board licensure examinations, medical schools would have
no choice but to include CFS in their curriculum.
I have appeared before this body on two separate occasions arguing for the use
of existing student programs within both the NIH and the CDC to rotate medical
students through NIH and CDC laboratories. I have pleaded for dialogue and
feedback on any of my proposals. I have heard nothing.
The only mechanism for medical student education for CFS is the medical student
scholarship programs run by patient advocate organizations. We now have
programs running in three states. How many scholarship programs must be mounted
by state patient advocate groups before the CDC mounts a single, national
medical student program?
Comments on Continuing Medical Education for Physicians
To my knowledge, the CDC�s on-line continuing medical education CFS course is
the only involvement of the federal government in healthcare provider education.
Does the CDC honestly believe that sitting in front of a computer screen for a
few hours will make a physician capable of diagnosing and treating CFS?
From the CFS Community's perspective, what is the impact of the on-line course
on diagnosis and treatment of CFS? From Vermont CFIDS: there is no increase in
the number of physicians who diagnose or treat CFS in this state. From NJCFSA:
the number of requests for physician referrals to our helpline has not
diminished.......
.....cont.
Comments on Chronic Fatigue Syndrome Educational Materials
In my opinion, all federal and private sector literature concerning Chronic
Fatigue Syndrome is out of date. There is no established mechanism for updating
health care provider literature. Of the available literature, the most
authoritative and accepted source of information on Chronic Fatigue Syndrome is
a physician�s diagnosis and treatment manual not produced by the Centers for
Disease Control, not produced by the National Institutes of Health, but produced
by the New Jersey Chronic Fatigue Syndrome Association: the Consensus Manual
for the Primary Care and Management of Chronic Fatigue Syndrome. I ask that
this Committee recommend to the U.S. Secretary of Health that a national
diagnosis and treatment manual for CFS be created, that a panel be formed to
write this manual, that the Department of Health and Human Services underwrite
the expense of producing and distributing this manual.
With regard to the recent, CDC �Spark Awareness� Campaign and the
accompanying �Physicians� Toolkit,� not one patient in the State of
Vermont ever saw the patient�s pamphlet. An incredible waste of money!
Conclusions
The only on-going educational programs for medical students and physicians that
involve human contact come from patient advocate groups.
Patient advocate groups are the current source of educational materials for CFS.
They rely on the assistance of academicians. If academicians are threatened
with termination of employment for participating in Chronic Fatigue Syndrome
education, there will be no educational programs.
I beg you to consider the magnitude of this problem.
I beg you to undertake a course of remedial action.
Thank-you!
Just to recap - the CISSD "Final Report to Action for M.E." that Dr Aust has linked to (an internal report which muddles its way through current ICD-10 classifications, in Appendix B) is not the same document as the journal paper published in July 07, which does not set out or include any discussion around existing ICD-10 codings. So I refer Dr Aust to the published review paper, since this is the paper that the field will have read.
Dr Sykes has written that his new "Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project" will have relevance to "all conditions characterised by medically unexplained symptoms, not just CFS/ME". He appears comfortable with CFS and "CFS/ME" being bundled under the umbrella terms of "MUS" and "Functional somatic syndromes", despite the implications for classification within the forthcoming DSM-V, and his evident pride in having gathered around him so many "leading experts" in the research field [of liaison psychiatry and psychosomatics] shows remarkable insouciance. This supports my view that Dr Sykes works in a vacuum, totally out of touch with the patient community in whose interests he says he works.
One view of the significance of the CISSD Project is that it was a personal project that got hijacked by the "big boys".
The project wasn't commissioned by the WHO or the DSM Task Force and does not have the authority of either, but Dr Sykes (not a main player in the field) managed to pull in big names - Kroenke and Sharpe for his UK and international chairs; Creed, Barsky, Levenson, Escobar, Brown, de Gucht, Fink, Henningsen, Hiller, Löwe, Mayou, Rief and many others who acted as advisors to this project. Where were the Jasons, the Friedbergs, the Steins and the Goudsmits? Did Dr Sykes invite any medical specialists in CFS and ME? Did he have no perception of the OMG! moment when it was discovered just who had comprised his workgroup?
The workgroup failed to reach consensus in many areas. But that did not matter too much because Creed, Co-Editor of the Journal of Psychosomatic Research, co-author of the EACLPP draft white paper on MUS, was in a position to publish papers authored by himself, by Michael Sharpe, by U.S. Gulf War Illness-denier, psychiatrist Kurt Kroenke, and by Levenson, Bradfield, Hiller, de Gucht, Mayou and Walker through which alternative opinions and recommendations could be articulated.
Several members of this workgroup are now at the very heart of the DSM revision process: Barsky, Levinson, Sharpe and Creed are all members of the "Somatic Distress Disorders" Work Group. Javier Escobar, Director of the University of Medicine and Dentistry of New Jersey (UMDNJ) Robert Wood Johnson Medical School (RWJMS) Medically Unexplained Physical Symptoms (MUPS) Center, which has been supported with over $4M in funding by the U.S. National Institute of Mental Health (NIMH), was a member of the CISSD Project and is now a member of the DSM-V Task Force and serves as Task Force liaison to the "Somatic Symptom Disorders" Work Group.
In 2008, Escobar co-authored a special report for Psychiatric Times that included a long list of medical conditions under "Functional Somatic Syndromes" or "Medically Unexplained Symptoms":
"Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, , Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome”
In April 2009, the DSM-V "Somatic Distress Disorders" Work Group Chair published a preliminary report which included proposals around dual diagnosis:
"Psychological factor affecting general medical condition: Some authors have recommended wider use of this category as it is a diagnosis that encompasses the interface between psychiatric and general medical disorders [6]. It has also been stated that this diagnosis has been underused because of the dichotomy, inherent in the “Somatoform” section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease; in the latter, the concepts of somatization, hypochondriasis, etc, were not seen as relevant [15]. By doing away with the controversial concept of “medically unexplained,” the proposed classification may diminish this problem.
"The conceptual framework that we propose will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome."
Under these proposals, psychiatry would be able to dual diagnose all these conditions under the conceptual framework of "eliminating body/mind duality", and offer treatments including Cognitive Behavioural Therapy and psychopharmaceuticals, thus reducing costs in specialist referrals,testing and treatments and expanding pharmaceutical markets and the use of "talking therapies".
The recently published In Press Editorial 'Is there a better term than "Medically unexplained symptoms"?': Francis Creed, Elspeth Guthrie, Per Fink, Peter Henningsen, Winfried Rief, Michael Sharpe and Peter White, discusses the deliberations of the EACLPP MUS study group:
"The European Association of Consultation Liaison Psychiatry and Psychosomatics (EACLPP) is preparing a document aimed at improving the quality of care received by patients who have "medically unexplained symptoms" or "somatisation". Part of this document identifies barriers to improved care and it has become apparent that the term "medically unexplained symptoms" is itself a barrier to improved care...
...The authors of this paper met in Manchester in May 2009 to review thoroughly this problem of terminology and make recommendations for a better term....The deliberations of the group form the basis of this paper..."
[...]
"Our priority was to identify a term or terms that would facilitate management - that is it would encourage joint medical psychiatric/psychological assessment and treatment and be acceptable to physicians, patients, psychiatrists and psychologists."
[...]
"Terms suggested as alternatives for "medically unexplained symptoms"
The group reviewed terms which are used currently or have been proposed for the future. An extensive list was abbreviated to the following 8 terms or categories: The terms we reviewed were:
1. Medically unexplained symptoms or medically unexplained physical symptoms
2. Functional disorder or functional somatic syndromes
3. Bodily distress syndrome/disorder or bodily stress syndrome/disorder
4. Somatic symptom disorder
5. Psychophysical / psychophysiological disorder
6. Psychosomatic disorder
7. Symptom defined illness or syndrome
8. Somatoform disorder"
[...]
"Implications for DSM-V and ICD-11
There is overlap between the discussion reported here and the discussion currently under way towards the creation of DSM-V. Two of the authors (FC, MS) are also members of the working group on Somatic Distress Disorders of the American Psychiatric Association (APA), which is proposing a new classification to replace the DSM-IV "somatoform" and related disorders. In this working group, similar concerns about the use of the term and concept of "medically unexplained symptoms" have been raised [12]. The current suggestion by the DSM-V work group to use the term "Complex somatic symptom disorder" must be seen as step in a process and not as a final proposal. Unfortunately this term does not appear to meet many of the criteria listed above."
[...]
"One major problem for reforming the classification relates to the fact that the DSM system includes only "mental" disorders whereas what we have described above is the necessity of not trying to force these disorders into either a "mental" or "physical" classification. The ICD-10 system has a similar problem as it has mental disorders separated from the rest of medical disorders.
The solution of "interface disorders", suggested by DSM IV, is a compromise but it is unsatisfactory as it is based on the dualistic separation of organic and psychological disorders and prevents the integration of the disorders with which we are concerned here. This lack of integration affects the ICD classification also. For example functional somatic syndromes (e.g. irritable bowel syndrome) would be classified within the "physical" classification of ICD or Axis III in DSM (gastrointestinal disorders) and omitted from the mental and behavioural chapter entirely [13]."
Field trials for DSM-V were expected to start this October. The most recent proposals of the SDD Work Group have not been published. Former DSM Task Force chairs, Spitzer and Frances, have called on the APA for total transparency of revision proposals before the field trials commence.
So where John Crippen writes in his Guardian opinion piece:
"Some people with ME are even more blinkered than the medical professionals. Patients with chronic illnesses such as cancer or heart disease sometimes get depressed and are helped by psychiatric treatment. You cannot suggest this to a militant ME sufferer."
I hope it will be seen that the issues are considerably more complex...
There was a considerably better article by the Guardian’s Melissa Viney, on Wednesday 28 October:
Bending the rules
Critics of new medical tests aimed at getting claimants off benefits and into work say they are target-driven measures that penalise genuinely ill people.
http://www.guardian.co.uk/society/2009/oct/28/work-capability-assessment-incapacity-benefits
Having fun Dr Crippen.
"Mentally ill" bashing it still a favourite British pastime and I believe quite a sophisticated and an elitist sport within medical circles - well really, what else is there to do now that idiotic government banned fox hunting!
I also believe that it is the only prejudice you can still openly declare to hold and is legally condoned and supported - now that the Gay rights movement has quite rightly achieved freedom from persecution and equal rights - who else is there left to bash!
You use the terms mentally ill and malingerer frequently in the same context when constructing an "informed" opinion. Moreover,you imply that mentally ill people cannot be physically ill in a way that "non mentally" ill people are. Very scientific?
For you I feel the term "mentally ill" is used to create a facade of social, moral and intellectual superiority. The term "mentally ill" seems to be used by you to imply your patient is a liar, idiot, lazy, chav and/or loner.
I'm sure you must be feeling quite perturbed by the latest NHS catch phrase - "integrated medicine", the changing mind campaign and the legal challenges to discrimination within healthcare, social provision and employment. This must be quite frightening for you with your "one size fits all" , "them and us", "Hysterical" approach to healthcare provision for the mentally ill. Are you quite sure you don't need an antidepressant?
And as the ME fiasco has shown the world, illness is a self serving social construction. What is "mental illness" other than a socially constructed catch all term to label individuals that we don't like, don't understand, won't listen listen to and can't help.
"Mental illness" is a great place to bin the ME sufferer because it makes everyone feel better personally and financially.
Sorry Suzy Chapman:
Any term with psycho, somatic, distressed or unexplained in it is definitely not working for me
And when you mention disorder and complex quite frankly I need to have a lie down!
Now which do I take first to calm my nurse, sorry nerves, anti psychotic, SSRI's,or benzodiapines?
http://www.meactionuk.org.uk/CDC_Chatter_Blog_-_Updated_021109.htm
comments include:
"The difference between AIDS and Hepatitis C and CFS (besides being incurable) is that doctors around the country KNOW how to treat AIDS and Hepatitis C. And if you've got the first two diseases, you don't have to convince an ignorant primary care physician that you're really sick. Persons with CFS have a difficult time finding practitioners who have any clue about managing this complex neuroimmune condition. So yes, in the absence of readily available medical care, some CFS or chronic neuroimmune disease centers are in order - for those who aren't lucky enough to live near a Dr. Peterson or a Dr. Klimas."
"We can't replicate the XMRV study because our samples aren't from patients meeting the 1994 Fukada definition or the 2003 Canadian consensus definition. And in 2003 when we had all the tests done we didn't test for any of the well known immunological problems or viral loads so we can't even subgroup."
"Let's be honest here: The CDC/CFS groups does NOT want to replicate this viral study because it only makes Reeves, et al look even more pathetic. Get real. The data is out there and there is NO excuse for Reeves and his people anymore. NONE. A number of other research orgs are replicating and the WPI has the largest tissue bank going back to the Incline Village cluster. The above statement on XMRV just does not cut the mustard and the researchers and public know it. Knock it off. CDC/CFS/Reeves got caught big time and Dan Peterson will read the riot act in DC on the 29th of Oct. A good time will be had by all - except the CDC."
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