'A wise man proportions his belief to the
-- David Hume
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)
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:
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:
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
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
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
ME and Human Rights
Russell Tribunal on
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:
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
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.
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:
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:
Case closed. Finito, lights off, The End.
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:
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.
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.
dr. Mikovits is quoted by Science to this effect:
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)
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.
above quotation is followed in the article in Science by
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.
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.
draws a contrast with the previous quote:
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)
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
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.
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:
began comparing Judy Mikovits to Joan of Arc. The scientists will burn
her at the stake, but her faithful following will have her canonized."
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.
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.
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
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
Here was this
mysterious disease,... and along comes a new virus. ... It seemed to
... have the makings of a medical breakthrough. (p.
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.
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:
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.
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
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)
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
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.
indeed was my position, until March this year.
In the Science article we now arrive at the prime bullshitter:
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.
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.
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
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:
Wessely over a barrel?
Margaret Williams 24th September 2011
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
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
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
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
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
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”
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
Here is what Science's editors ought to do,
it seems to me:
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
philosophy, philosophy of science, and psychiatry
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:
and they also speak for very many patients and write
on the basis of excellent understanding of science and of the disease
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:
Invest In ME.
(*) 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
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.