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Nederlog
Sep 24, 2011           

Exit XMRV? On Science article "False Posi±ive" and other articles


 
  'A wise man proportions his belief to the
   evidence.'
   -- David Hume
 

Sections

1. More reporting in the press around XMRV and ME/CFS
2. Lesson and warning: DSM-5 is dangerous for many!
3. Some more on the
 Science article "False Posi±ive"
4.    Professor Wessely over a barrel?
  (By Margaret Williams)

1. More reporting in the press around XMRV and ME/CFS

Before turning to the long article in Science let me give some links to other publications in the press on the subject - and the ones I will give all have the merit of being done well, which is a pleasant surprise.

First, a repeat from yesterday, because it is brief, clear, to the point and well written: Amy Dockser Marcus, in the Wall Street Journal:

Scientists retreat on Chronic-Fatigue Theory

Second, an article in by David Tuller in the New York Times, also well done and informed:

Viral Theory Is Set Back in Chronic Fatigue Study

Third, an article on the BBC UK's website by James Gallagher, yet again well done and informed:

Chronic Fatigue Syndrome: 'Surrounded by Uncertainty'

It's true I possibly could fault any of these on small details, and the last one on reporting Esther Crawley's unsupported claims without dissent, but overall the reporting is good, unbiased and informative.

This has been quite different, in the sense that I have read a fair amount of journalism about ME/CFS that was uninformed or biased, while the above, that probably does reach millions, taken together, is not, which is in everyone's interest, if unbiased informed reporting and real science are in everyone's interest, which I think they are, since honest conversation and rational investigation are the foundation of human civilization.

2. Lesson and warning: DSM-5 is dangerous for many!

Also, there is a possible lesson here, and a theme that I hope will be taken up by responsible journalists:

One main reason patients with ME are in such problems - without help while being ill, forced to work while being ill, defamed, slandered and denigrated as malingerers or somatoformers or neurasthenics by British, Danish, Dutch and US psychiatrists - is that both the patients and the disease have been systematically lied about by Wessely and his followers, whose general argument comes to this: all ailments and diseases that medical science has not yet explained biomedically must be effectively regarded as mental illness (by a euphemistic tag such as "somatoformer", but with very realistic discrimination, loss of income, denial of help, refusal of medical research into one's disease, and forced litigation to uphold that one is ill in court while one is ill, because if one doesn't one looses one's money to eat and pay the rent).

The net effect for psychiatrists is more income for psychiatrists: They have declared themselves experts in all diseases that are not explained.

The net effect for government health services is that they get a means to refuse medical treatments and health benefits to many ill people: No, you won't get help, because you are a malingerer, no sorry, a mad person, no excuse me: a somatoformer.

The net effect for patients is that they may have received for decades an open invitation for suicide, and enormous amounts of discrimination, all in radical conflict with their human rights, but perpetrated because pseudoscientific "authorities" like Wessely abused their authority and medical degrees, and could get away with it for lack of sufficiently many good investigative journalists:

ME and Human Rights
Russell  Tribunal on Psychiatry

This should be of interest to responsible journalists, since Wessely, his followers, and his kind of psychiatrists have been doing this for over two decades, and also have been able to gain the upper hand in the APA and with the editors of the DSM-5, which threatens everyone in the US, and wherever it will be followed, because it will effectively treat and classify all ailments and diseases that medical science has not yet explained biomedically as if they must be effectively regarded as mental illness, and merit psychiatric pills, psychiatric therapies, and psychiatric sectioning for those who disagree or fail to comply:

The American Psychiatric Association (APA) has gone crazy -- like a fox
From the Washington Examiner
On the DSM-5TM
From my website, also with material by Suzy Chapman
Submission to the DSM-5 Task Force of the APA
From my website, with a reasoned argument, based on the DSM-5 editors' own texts, to the effect that the editors of the DSM-5 indulge in pseudoscience.

And yes... this is all of importance to very many more persons than persons with ME: It's dangerous pseudoscience dressed up as modern psychiatry, and if you want a preview of how things probably will go for many with unexplained or partially explained diseases once the DSM-5 is accepted, you only have to study how patients with ME have been abused, discriminated and driven to suicide by Wessely, Reeves, Sharpe, White and other pseudoscientific shrinks, all acting in the name of science, rather like Stalin acted in the name of humanity.

3. Some more on the  Science article "False Posi±ive"

To continue yesterday's Nederlog about XMRV and indeed the one of the day before yesterday, I will quote some from yesterday's article in the Science pages in pdf format, that was written by Jon Cohen and Martin Enserink, and that has the following title - and I have put the ± in the title because it's in Science's title. Also, I give today a link to a post on Phoenix Rising were the article can be picked up without registering (it seems) (*):

False Posi±ive (pdf, 1.2 Mb)

Yesterday I gave its opening quote, which I regard as bad and sensationalistic writing:

A report in Science 2 years ago that linked a mouse retrovirus, XMRV, to chronic fatigue syndrome astonished scientists and patients alike. But the theory soon began to take hits, and now, to all but a few researchers, it has completely unraveled

As first three paragraphs it then has the following stylistic gem:

Done. Case closed. Finito, lights off, The End.

For the past 2 years, a controversy has roiled around the purported link between a mouse retrovirus, XMRV, and chronic fatigue syndrome (CFS), a baffling, debilitating disease with no known origin. Many researchers who have followed this saga closely thought that a definitive study, published online this week by Science (http://scim.ag/xmrv-cfs) and conducted by nine labs—including the main proponents of the thesis—would finally bring a halt to the impassioned debate.

Think again. (p. 1694)

This I quoted yesterday. Now let me pick some quotes from the article and give some comments, after two introductory remarks on the formatting and the aims of the article.

The formatting of the article, at least in the pdf I have read, which therefore probably will be done similarly in print, is rather sensationalistic:

It is presented as "NEWSFOCUS" (without quotes), on pages 1694-1701, starting with a large photograph of a male torso in a red t-shirt with large white letters that say "XMRV positive" (again without quotes). After that follow the title and introduction I quoted above, after which follow 7 pages of text, that each have a picture of one of the main players involved with ME/CFS, except for one page, that only has a quotation attributed to dr. Mikovits.

The aims of the article are probably several, including the two I shall mention: Salvage the reputation of Science (the magazine, not the human search for rational knowledge) and stop the search for XMRV, that was strongly fueled by the article on XMRV by Lombardi, Mikovits et al in October 2009, that the editors of Science now believe, indeed with good evidence, to have been mistaken.

Given the aims - which I suppose to be honorable: Science published an article that they believe to be mistaken, and want to limit the damages to themselves and others - I can understand the formatting, though I still don't like the style of writing.

Now to the contents of the article, which mostly attempts to tell the story of how the editors of Science came to publish the article of Lombardi, Mikovits et al, and then came to regret it.

I will select quotations in the order in which they appear, and give some comments. To start then, after the opening quoted above, Cohen and Enserink wrote:

The uproar began with an October 2009 paper in Science that found XMRV in the blood of two-thirds of the CFS patients examined. A steady assault on the report soon began, with more than a dozen labs failing to replicate it to date and several asserting that contamination must have occurred. The leader of the team that conducted the study, Judy Mikovits of the Whittemore Peterson Institute for Neuro-Immune Disease (WPI) in Reno, Nevada, resolutely maintained that her lab had no evidence of contamination and that it could repeatedly find the virus with its techniques. Millions of dollars have gone into clarifying the question, which has had far-reaching consequences for people with CFS and, if the virus lurked in the blood supply, the public at large.
 
The study just published found that none of the nine labs could reproducibly detect XMRV or relatives of the virus in blood samples distributed under a blinded code. (p. 1694)

This conforms with what I said by way of my introductory remarks on Science's formatting and aims of this article. Then (skipping a little, a remark which I will not be repeating if I do):

In an unexpected twist to this operatic saga, Mikovits co-authored the Science Express paper and has no quarrel with the results. Her collaborator, Francis Ruscetti, a retrovirologist at the U.S. National Cancer Institute (NCI) in Frederick, Maryland, who is a co-author of both the original Science report and the new one, concurs. “Where there is disagreement is in the interpretation,” Ruscetti says. (p. 1694-1695)

This seems fair enough, but Science doesn't quite seem to agree, for it prints on this page an unflattering picture of dr. Mikovits, with an unflattering and unwise quotation attributed to her, and again in white lettering on a red background: "I don't care if nobody else in the world wants to work on it. Fine, leave us alone!"

I suppose she spoke in anger, for I don't really believe she means this. What she does seem to believe, and Science also quotes, is this:

“The conclusion of the Blood Working Group was that we don’t have a reproducible assay to detect XMRVs in the blood—not that they weren’t  in the patients at all,” Mikovits says. (p. 1695)

She agrees with that conclusion, being a co-author of the paper, and indeed she may be right in her own conviction, but then again much of the empirical evidence for that conviction, namely her own findings of XMRV in the blood of patients, now has been agreed to be not reproducible, and therefore no good evidence.

More precisely, dr. Mikovits is quoted by Science to this effect:

“We still stand by our data that we isolated gammaretroviruses from patients with CFS and also from healthy controls,” says Mikovits, who has taken a more public role than Ruscetti in battling critics and reaching out to supporters. (p. 1695)

Again, this may be so, but even if it is so, it is not clear what this would mean for people with ME/CFS: It may be a fluke, an accident, or a passenger virus - and until there are reliable and reproducible tests for XMRV, it will be difficult to establish.

The above quotation is followed in the article in Science by

Mikovits has become something of a savior in the community of people with CFS (also known as myalgic encephalomyelitis, or ME), who for decades have endured charges that the disease is psychosomatic. (p. 1695)

That seems mostly true, but is not dr. Mikovits' doing, for the most part, but is mostly due to the patients, whose reaction again is mostly due to the pseudoscience of the psychiatric professor Wessely, who also figures in Science's article, and who has been saying for two decades, in print, while carefully not mentioning all evidence he was bullshitting (**), which he was and still is, that ME/CFS is neurasthenia, somatoforming, psychosomatic, or any of the other euphemisms that are currently the Politically Correct shrink-lingo for effectively sectionable "mentally ill" patients - who after such mistreatment may die horribly, with evidence of serious disease in the pathology lab: See Sophia Mirza and Lynn Gilderdale, for two examples.

Science draws a contrast with the previous quote:

In scientific circles, Mikovits has developed a less flattering reputation. Critics have accused her and her backers of stubbornly wedding themselves to a thesis and moving the goalposts with each study that challenges their conclusions. (p. 1695)

I don't say "No" - but then I've seen far worse by Wessely and his co-workers, who have been doing pseudoscience for over two decades now without being sanctioned by any writing in Science that I know of, while anybody who is scientifically qualified as regards methodology and philosophy of science can and should know that Wessely's, Reeves', Bleijenberg's and other psychiatric or psychotherapeutic writings about ME/CFS, are the sheerest bogus, and grossly unethical in anyone who has a medical title.

Science quotes Ms. McCleary, the "president of the CFIDS Association", who also doesn't believe that XMRV causes ME/CFS and who seems every year to earn in her role as "president of the CFIDS" more than (or about as much as)  the president (prime minister) of the Netherlands, who I therefore skip, though I can't forebear to mention that Science honors her with a portrait and also with a special quote in large letters in the article.

There are some two pages - 1695 and 1696 - more about the backgrounds of various people in the article that I mostly didn't know: Peterson, the Whittemores, De Meirleir, Lombardi, Ruscetti, and Silverman are all mentioned, as are some others, such as Gallo and Coffin, the latter with an unflattering bearded picture and this quote, in big letters set white on a red background, that is not precisely scientific:

"I began comparing Judy Mikovits to Joan of Arc. The scientists will burn her at the stake, but her faithful following will have her canonized." (p. 1696)

While I agree that some patients have revered dr. Mikovits, much of this is due to her being a real scientist willing to take the patients and their disease seriously, instead of pooh-poohing their complaints, in the name of psychiatric pseudoscience. And the latter has resulted for many really ill patients, like me, in decades of discrimination and no help or serious medical research into one's real problems whatsoever, because the doctors one meets prefer not to think or not to empirically investigate one's medical condition themselves, but prefer simply to follow the iatrogenic rot of Wessely and his psychiatric mates, who publish such rot to get more patients and thus more money themselves. But I think I should remark about dr. Coffin's quoted statement that it sounds - to me - like complete unscientific nonsense to suggest that real scientists are folks willing to burn others at the stake.

Then again, it seems that dr. Coffin has had some unpleasant e-mail exchanges with some rather fanatic and indeed quite unscientific believers in dr. Mikovits, so he may well have spoken in anger.

The article gives some more history leading up to the paper that Science published in 2009, and then says, fairly enough:

Mikovits, Ruscetti, Silverman, and their co-authors submitted a paper to Science in May 2009. The paper, of which Lombardi was first author, did not claim that XMRV caused CFS, noting that the disease might simply make patients more vulnerable to infection. Causality “is probable but not definitive at this time,” Lombardi et al. stated.

But what they were asserting was stunning enough: WPI, NCI, and the Cleveland Clinic had all found evidence of XMRV in the same CFS patients. Some of these people had participated in a 2007 NCI drug study, too, and their blood samples, stored separately, also tested positive, “ruling out the possibility of lab contamination as a source,” the authors wrote. When the team calculated the so-called p-value—which generally needs to be under 0.05 for a finding to be considered significant—they arrived at the astonishingly low number of 8.1×10–35. (p. 1697)

This has the merit of making clear why many people with some knowledge of science were willing to take the publication in Science seriously.

Indeed, so did I, although I perhaps should mention in passing that I tend to be skeptical about p-values in general, not just in this case, because I know they are usually based on fargoing assumptions that rarely are justified.

Side by side with the above quotation is a not unflattering picture of dr. Silverman, who in a sense started it all, as the Science article makes clear, also with a quotation in big letters, this time red on a white background:

Here was this mysterious disease,... and along comes a new virus. ... It seemed to ... have the makings of a medical breakthrough. (p. 1697)

Yes, and that was a fair estimate of things late in 2009.

The article proceeds by explaining that Science originally was skeptical, but then got convinced - mostly, it seems - by dr. Coffin, who thought then that the evidence was good.

It then continues explaining how this was undermined by a series of papers in which XMRV was not found, some by "scientists" who had a personal stake in its not being found, like the egregious psychiatric freak Wessely, but also some by scientists who did not have such a personal stake, and still could not find it.

Somewhat strangely, the Science article's story of the discomfiture of XMRV starts with Kim McCleary, the very well-paid President of the CFIDS Association, who already in October 2009 presciently saw the light, she seems to have told Science in 2011:

”Here we go again.” That’s what crossed Kimberly McCleary’s mind when she read the first headlines about the paper that week in her office in Charlotte. In her 20-plus years at CFIDS, McCleary had seen many infectious agents fingered as a potential cause of CFS. HHV-6. Epstein-Barr virus. Mycoplasma. Adenovirus. Cytomegalovirus. HTLV-I and -II. And on and on. Each time, hopes were dashed as scientists closely evaluated the suspects. (p. 1697)

I very much doubt it, for this is neither scientific nor rational, and while I do not want to suggest Ms McCleary is scientific and rational, I don't think she is stupid: "Each time, hopes were dashed as scientists closely evaluated the suspects" just is baloney, simply because real science hardly ever is as conclusive, and especially not about rare diseases for which the research is at the edge of science: What you have there, rationally speaking, are just probabilities, that go up and down with the incoming evidence, as this supports or undermines it.

I do think Ms McCleary was cautious, and agree she had reasons to be, but I don't think she was prescient, nor do I think, as the Science article says, that

Lombardi et al. had made XMRV a superstar. (p. 1697)

That's more of the style I don't like, that befits Lady Gaga's antics, but not a serious subject, and besides is not so, except perhaps for a number of patients.

I suppose most others had mostly a let's-wait-and-see outlook: The findings are interesting; the evidence seems good; but there is no known causal mechanism or proof of causality and there is little independent confirming evidence of the findings by Lombardi et al.

That indeed was my position, until March this year. In the Science article we now arrive at the prime bullshitter:

But many scientists were skeptical. Simon Wessely, a psychiatric researcher at King’s College London who has long studied CFS, says the virology went over his head, but the fact that fully two-thirds of CFS patients harbored the virus was an alarm bell. CFS, whose definition has been the subject of years of debate, is far too heterogeneous a phenomenon for that, he says. (p. 1697)

Simon Wessely always seems to say what at that moment appears to him the best twist to further his own personal interests as a professor of psychiatry who insists on classifying any patient with any unknown disease as a psychiatric case, which is one of the few things he has done consistently since 1988.

Otherwise he lies. Thus, he has been saying since 2001 or 2002 that he is not involved anymore in research of ME/CFS, but has been ever since; he has not been saying that "the virology went over his head" but got space in the BMJ for a fraudulent editorial on it; he did not earlier say that "CFS, whose definition has been the subject of years of debate, is far too heterogeneous a phenomenon for that", for he has insisted for two decades now, whenever he had a chance, that people who are "chronically fatigued" are neurasthenics, pardon, psychosomatizers, pardon, somatoformers. But yes, he has been double-talking, lying and bullshitting for over two decades now that the definition of ME/CFS should not be what the WHO and reputable doctors like Ramsay and Komaroff say it is: A neurological disease of unknown origin that is not psychiatric.

Professor Wessely has told everyone who was willing to read and listen that CFS - as he calls it, if he doesn't call it "chronic fatigue" - is all in the mind, and comes about because patients have "dysfunctional belief systems", and think themselves ill, all 17 million or so:

No way this can have a physical cause, according to professor Wessely, who, one must assume for that reason, always fails to mention any evidence by real scientists that persons with ME/CFS have provably quite a lot wrong with them, as he also fails to mention to journalists he talks to that he opposes the WHO's classification since 1988, because he believes that he knows better: The WHO also must be full of medical doctors with "dysfunctional belief systems".

Messrs. Cohen and Enserink must believe or fear professor Wessely, for they fail to consider the logical implication that doctors Komaroff, Alter, Lipkin, Ramsay and many others - thousands, at least - also must have "dysfunctional belief systems", that is, also must be nutters in Wessely's schema of "explaining" - and these doctors and professors don't even have the excuse of feeling "chronically fatigued" nor the excuse of lacking a degree in medicine!

Why does Science - or the the British Medical Journal, or the Lancet - never discuss the possibility that a mere shrink who claims, by direct logical implication, that the WHO and thousands of medical doctors who are not shrinks and millions of people who are ill are in fact all - the patients who say they're ill and the doctors who agree they are ill - insane, and all - many millions of patients and many thousands of doctors, are all suffering from very severe "dysfunctional belief systems" that only professor Wessely and his friends can properly see, diagnose and treat?!

What's normal, scientific, "evidence-based", or moral, about that?! Science's journalists do not discuss it. What they do is put up a picture of Wessely, still with a Hitlerish sort of moustache, but looking fatter, more ungainly, and like a partially bald Glenn Beck, who puts hairspray in his remaining hairs to make him look like he has a halo or is a clown:

It wasn’t just that scientists were growing tired of the debate, Wessely says. Some were put off by the “appalling, unforgivable attacks” by some patient advocates on those who criticized WPI’s findings. Wessely says he has received death threats in recent years. “People will rather go over the Niagara in a barrel than ever getting involved in CFS again,” he says. (p. 1701)

This sadistic nutter can discriminate, denigrate, defame, demean, offend, slander and blacken ill people for over two decades, on the basis of nothing but his own brand of psychiatric bullshit, without any decent real scientific evidence or theoretical foundation whatsoever, and he is now claiming, again without any evidence, that "he has received death threats in recent years". Science magazine does not ask for proof or evidence, but prints his bullshit next to his picture, even though he has been claiming, falsely as usual, that he is not involved with ME/CFS-"research" since 2002.

And what this sadistic and lying shrink is doing here, and gets the opportunity to do from Science, is to try to hunt real scientists, who could refute his baloney by establishing a real biomedical cause, away from investigating his bullshit, by suggesting they may get death-threats, like he claims to have had.

4. Professor Wessely over a barrel?

And arrived at this point I saw that Margaret Williams got fed up for similar reasons as I did get fed up. Here she is, with a link in the title to the original as I found it on Phoenix Rising, and with my bolding added:

Professor Wessely over a barrel?

Margaret Williams 24th September 2011

On 23rd September 2011 in its “News Focus”, the journal Science published a chronology of events surrounding the putative relationship of a retrovirus with ME/CFS (False Positive; www.sciencemag.org), in which psychiatrist Simon Wessely was quoted: “People will rather go over Niagara in a barrel than ever getting involved in CFS again”.

His statement is clearly contemptuous about everyone suffering from ME (known by him and his colleagues as “CFS”) and it seems designed to ensure that biomedical research into the disorder will not proceed. Such overt discouragement of urgently-needed research into ME is contrary to the basic tenet of medicine, which used to be: “First do no harm”.

Professor Wessely’s latest jibe illustrates exactly what should not occur when clinicians are dealing with sick and vulnerable people: “The most shameful behaviour is to engage in a contest of meanings with a patient, denigrating or ridiculing what one does not agree with” (Healing beyond the body – Medicine and the Infinite Reach of the Mind; Dr Larry Dossey; Piatkus Books, 2002).

Wessely certainly does not agree that biomedical research into ME is needed; he is well-known for his belief that ME/CFS is “somatisation par excellence” (J Psychosom Res 1994:38:2:89-98) and for his British Medical Journal podcast on 5th March 2010: “We’re not going to go doing more and more tests to find out what the virus was because, frankly, even if we found it there’s nothing we’re going to do about it. We’re in the business of rehabilitation” (http://podcasts.bmj/2010 /03/05.chronic-fatigue-syndrome).

It is not surprising that Professors Wessely, Peter White and Michael Sharpe, all of whom were involved with the PACE Trial, are held in deep disregard by those whose lives have been wrecked by ME/CFS and who – rightly – are both exasperated and infuriated at repeatedly reading the inane description of their disease as fatigue, with some cognitive impairment, and perhaps a bit of depression thrown in for good measure.

Each and every time that Wessely makes yet another denigratory attack on people with ME, there is a need for attention to be drawn to the reality of ME, which cannot be repeated too often. ME is not “fatigue”, accompanied by a few memory problems and depression, nor is it an aberrant illness belief that has resulted in reversible deconditioning, as the Wessely School maintain.

ME is a devastating multi-system inflammatory neuro- immune disorder, with extreme malaise; nausea; abdominal pain and diarrhoea; frequency of micturition with nocturia; post-exertional exhaustion almost to the point of collapse; inability to stand unsupported for more than a few moments, sometimes being too weak and painful to walk; inability to walk upstairs or to maintain sustained muscle strength, as in brushing one’s hair; inability to carry a shopping bag, or dry oneself after a bath, peel vegetables or prepare a meal, with recurrent mouth ulcers that make speaking and eating difficult.

ME is neuromuscular in-coordination, not only of fine finger movement with clumsiness and inability to control a pen and to write legibly, but also of the larynx and oesophagus – there is a need to swallow carefully to avoid choking, with oesophageal spasm and pain.

ME is constant danger of falling because of balance disturbance (ie. dysequilibrium or loss of balance); staggering gait (ataxia); dizziness on moving, with episodic incapacitating vertigo; difficulty with voice production, especially if speaking is sustained; expressive dysphasia (inability to find the right word); muscle cramps, spasms and twitching and spasmodic trembling of arms, legs and hands.

ME is frequent episodes of angor animi (brought about by abrupt vasomotor changes, when the heart stops beating then crashes furiously, causing difficulty breathing and uncontrollable shaking, and feeling that death is imminent); there may be an urgent need for oxygen.

ME is photophobia; difficulty in focusing and in visual accommodation, with rapid changes in visual acuity; blurred and double vision; sometimes actual loss of vision; eye pain; swollen and painful eyelids, with inability to keep the eyelids open.

ME is tinnitus and hyperacusis, for example the noise of a lawnmower can cause acute distress and nausea; heightened sensory perception (eg. acute sensitivity to being patted on the back; inability to tolerate lights, echoes, smells, movement, noise and confusion such as found in a shopping mall or supermarket without being reduced to near-collapse).
ME is peripheral neuropathy; numbness in the face; parasthesias; altered sleep patterns, with hypersomnia and insomnia.

ME is severe dysautonomia, including alternate sweats and shivers; temperature dysregulation, with intolerance of heat and cold; tightness of the chest alternating with a moist chest; breathing problems -- shortness of breath on minimal exertion; the need to sleep upright because of weakness of the intercostal muscles; pronounced cardiac arrhythmias; lack of bladder and bowel control; orthostatic tachycardia; orthostatic hypotension, with extremely labile blood pressure that is not amenable to therapeutic drugs.

ME is intermittent palindromic nerve pains; muscle tenderness and myalgia, sometimes burning or vice-like; typically shoulder and pelvic girdle pain, with neck pain and sometimes an inability to hold the head up.

ME is hypovolaemia, with blood pooling in the legs and feeling faint due to insufficient blood supply to the brain; there may be swollen feet and ankles.

ME is intermittent crushing chest pain akin to a myocardial infarct; segmental chest wall pain; subcostal pain; vasculitic spasms, including headaches; cold and discoloured extremities, with secondary Raynaud’s Disease; easy bruising; peri-articular bleeds, especially in the fingers; leaking blood vessels; cutaneous vasculitis with rashes; flushing of the face (sometime just on one side); flushing and swelling of fingers and hands, with vasculitis of feet and (in females) the breasts.

ME is pancreatic exocrine dysfunction leading to malabsorption; reduced liver function and demonstrable adrenal insufficiency.

How Wessely could possibly justify encouraging scientists not to engage with such a devastating disorder is incomprehensible, yet he has been taunting and ridiculing patients with ME for years, denying their illness (Susanna Agardy; Co-Cure EDU: 25th August 2011).

The first tenet of medical research used to be that it was necessary to have as homogeneous a cohort as possible, this being another tenet that seems to have vanished – witness the moving of goal posts by the Wessely School.

For example, contrary to accepted scientific practice, the PACE Trial Investigators deliberately chose broad entry criteria which included people with psychogenic fatigue, idiopathic fatigue and fibromyalgia – quite different disorders – claiming that they were all manifestations of medically unexplained fatigue, despite the fact that the trial purported to be studying those with the discrete disorder “CFS/ME”.

Deliberately to broaden entry criteria for a clinical trial to include patients who do not have the disorder allegedly being studied contravenes elementary rules of scientific procedure.

As noted by others: “Mixing in people who do not have a disease with patients who do confounds the results and conclusions of any study regardless of the disease or disorder being studied” (Kelly Latta; Co-Cure RES; 15th September 2011).

However, having claimed for many years that ME, CFS, irritable bowel syndrome, fibromyalgia, hyperventilation syndrome, “atypical” chest pain, tension headache, pre-menstrual syndrome, globus hystericus and multiple chemical sensitivity are all one single functional somatic syndrome, those same PACE Investigators are now on record saying something rather different.

A recent article by BBC News health reporter James Gallagher says: “There is emerging consensus that CFS/ME is not one illness”; Professor Peter White is on record in the article stating: “Most specialist doctors (there are no specialist NHS doctors in the UK apart from psychiatrists) and scientists agree that it is more than one illness. It may be three to five separate illnesses”, whilst his co-Principal Investigator, Michael Sharpe, is now saying: “The concepts of CFS and ME have been conflated as CFS/ME. That may be right but it may be a bit like an apple/banana – we need to be clearer what we are talking about” (http://www.bbc.co.uk/news/ health-14883651).

That is precisely what biomedical scientists and patients with ME have been saying for decades. The PACE and FINE Trials have shown that “the business of rehabilitation” is unsuccessful. Is it not time for the Wessely School to leave the field entirely and encourage new approaches based on hard science rather than psycho-speculation?

Excellent stuff - and I mean Margaret Williams's. As to Science:

Here is what Science's editors ought to do, it seems to me:

Give space to professor Hooper and Margaret Williams to explain, to the readers of Science, what they think ME/CFS really is, and why psychiatrists are not the right sort of persons to receive most of the research money, nor worthy of belief when they speak about ill people, nor should they be given the authority to risk the health, the well-being, indeed the lives of the very many often very ill people they slander as being "mentally ill" or "malingerers", or in more euphemistic terms, in the media, but with - very serious - legal implications for patients, who get no help, and no dole and no chances on a decent life, because of Wessely and psychiatric company's pseudoscience, and because their intentional bullshit, their lies, and their attempts to confuse, muddle, mix up and confuse all real scientific research into ME/CFS, since this would show them to be liars and frauds directly, and namely without one's needing to know real science, philosophy of science and methodology:

    On natural philosophy, philosophy of science, and psychiatry

Professor Hooper and Margaret Williams have very effectively and with real scientific understanding and extensive knowledge showed why and where Wessely and his school are mistaken:

Magical Medicine (pdf)

and they also speak for very many patients and write on the basis of excellent understanding of science and of the disease ME/CFS.

Open Science to them, editors of Science! They deserve it; the patients with ME/CFS deserve it; Wessely deserves it as well, namely  to have his bluff and bullshit called; and the readers of Science deserve, at long last, to see some pages written by people who really know what ME/CFS is like, in real life, and in real science.

And here, to finish with a link to very much fine evidence relating to ME and its scientific study, is the link to the excellent:

ME Information Centre

at Invest In ME.
 


Notes

(*) I think nearly all registering is commercial, and I and my personal computer are spied upon far more than I like anyway, though indeed mostly not by Science and such - and I also think real science ought to be public and free.

(**) And here, by the way, is professor Frankfurter on the subject of bullshitting, with my stresses added:

It is impossible for someone to lie unless he thinks he knows the truth. Producing bullshit requires no such conviction. A person who lies is thereby responding to the truth, and he is to that extent respectful of it. When an honest man speaks, he says only what he believes to be true; and for the liar, it is correspondingly indispensable that he considers his statements to be false. For the bullshitter, however, all these bets are off: he is neither on the side of the true nor on the side of the false. His eye is not on the facts at all, as the eyes of the honest man and of the liar are, except insofar as they may be pertinent to his interest in getting away with what he says. He does not care whether the things he says describe reality correctly. He just picks them out, or makes them up, to suit his purpose.

That is the "science" of Wessely, White, Sharpe, Reeves, Jones, and some 15-30 other shrinks with an active personal interest to make as many diseases and ill people as possible get a psychiatric diagnosis, as also practised by the APA while cobbling together the DSM-5.

It is high time Science stands up against pseudo-science, and if they do not have the talent in their staff to do it well, orwho are not willing to risk annoying the likes of professor Wessely, there are many who can do it for them if they get the space:

Professor Hooper, Margaret Williams, the folks at the Skeptic Inquirer... if you do not stand up to bullshitters they take over whatever they can, in politics, in religion and in science, for e.g. psychiatric bullshit got as far as it got - tens, hundreds, thousands of really ill people manipulated into suicide by the Wesselys of this world: nobody will ever know, but in 23 years of slander and defamation of millions of genuinely ill people you can commit a lot of harm and do a lot of indirect murders - because those who should stand up against them, do not:

"First they came for the Communists, and I didn't speak  up, because I wasn't a Communist. Then they came for the sick, the so-called  incurables, and I didn't speak up, because I wasn't mentally ill. Then they came for the Jews, and I didn't speak up, because I wasn't a Jew. Then they came for me, and by that time there was  no one left to speak up for me."

Reverend Martin Niemőller 1946 about the reasons for Hitler's rise.


P.S. Corrections, if any are necessary, have to be made later.
-- Sep 25, 2011: I made a few small corrections and added some missing page numbers in the quotations I gave.



As to ME/CFS (that I prefer to call ME):


1.  Anthony Komaroff Ten discoveries about the biology of CFS (pdf)
2.  Malcolm Hooper THE MENTAL HEALTH MOVEMENT: 
PERSECUTION OF PATIENTS?
3.  Hillary Johnson The Why
4.  Consensus of M.D.s Canadian Consensus Government Report on ME (pdf)
5.  Eleanor Stein Clinical Guidelines for Psychiatrists (pdf)
6.  William Clifford The Ethics of Belief
7.  Paul Lutus

Is Psychology a Science?

8.  Malcolm Hooper Magical Medicine (pdf)
9.
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
10.
 Maarten Maartensz Myalgic Encephalomyelitis

Short descriptions of the above:                

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:

7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam/ with ME.
10. The directory on my site about ME.



See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.
 


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