April 17, 2011


ME: Margaret Williams - The Media and ME


The fairest thing of all is to be just;
The best to live without disease; most sweet
Power to win each day the heart's desire.
-- Sophocles

I am around, as you see, but there was no Nederlog for three days because in fact I felt a bit better, and did a bit more, and then had no energy left to spend on the site.

So that's why there were no Nederlogs - and today I also will write very little, and instead copy text from Margaret Williams. The original is on the MEAction site namely here, and it may be reposted according to a post on Phoenix Rising, which did.

And so do I accordingly, and the title that follows once more links to the original: I only changed the font and added the link in the title. I also have a small remark at the end, which is my responsibility, which has a lot to do with my background and my reasons to study philosophy and psychology, rather than something more mathematical, which very probably would have been better for me. (But with ME it is difficult to say.)

The Media and ME

Margaret Williams         16th April 2011

Ever since the foundation of the UK Science Media Centre in 1999 – whose purpose is to ensure that the media deliver only headline science stories that accord with Government policies – the reporting of the biomedical science surrounding ME/CFS has been noticeable by its absence. Instead, there has been a wealth of spin promoting the benefits and success of CBT and GET for every disorder imaginable, including ME/CFS.

In plain terms, the Science Media Centre presents only a one-sided view of the available information about ME/CFS, and direct contact with editors and health editors of broadsheet newspapers has revealed their policy of limiting their reporting of ME/CFS to what they receive from the Science Media Centre.

The fanfare of unlimited praise for the PACE Trial results at the press conference held at the Science Media Centre on 17th February 2011 is a case in point, with the media failing to use its critical faculties and regurgitating only what it had been spoon-fed.

There are a staggering number of flaws in the PACE Trial article published in The Lancet (Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Peter D White et al. The Lancet, 18 February 2011 doi:10.1016/S0140-6736(11)60096-2), not one of which was mentioned in the press conference.

These flaws and errors have been identified in a detailed complaint/statistical analysis sent by Professor Malcolm Hooper to The Lancet on 28th March 2011, upon which The Lancet has asked Professor Peter White to comment (a response with which Professor White has apparently not complied within the time allotted for its receipt by The Lancet).

It is understood that under the Elsevier complaints policy, Professor Hooper will be asked to respond to Professor White’s reply when it is received by The Lancet; it is also understood that the PACE Trial article was to be sent for re-review by different reviewers and statisticians whilst The Lancet was awaiting Professor White’s comments on Professor Hooper’s complaint.

Professor Hooper’s analysis will shortly be placed in the public domain; he had agreed with The Lancet to withhold his complaint from publication during the time allotted by The Lancet to Professor White to respond to it, but this agreed time limit has now expired.

There is one crucial point that should not be overlooked amidst the multitude of comments, spin, disquiet and anger surrounding the clearly contrived and exaggerated results of the PACE Trial, which is that if the PACE Trial Investigators had claimed to be studying the effect of CBT/GET on people with medically unexplained or idiosyncratic “fatigue”, few people would have objected.

What is fuelling the opprobrium is the fact that the PACE Trial Investigators insist that they have been studying those with “CFS/ME”, which is how they refer to the neuroimmune disorder ME/CFS.

The pressing question has to be how the Wessely School can be permitted to disregard the ever-increasing biomedical evidence-base on ME/CFS and to refuse – on no evidence whatever -- to accept the WHO classification of ME/CFS as a neurological disorder.

What can be done to halt the Wessely School’s anti-science activities and misinformation about ME/CFS which they propagate and disseminate with consummate skill?  Since they will not budge from their beliefs, could they be right and the biomedical scientists be wrong?  Not at all: the Wessely School is gravely mistaken about the nature of ME/CFS and about their ascription of its symptomatology to a somatoform disorder.

In 1978 (33 years ago), the BMJ published a summary of the symposium on ME held that year at The Royal Society of Medicine:

there was clear agreement that myalgic encephalomyelitis is a distinct nosological entity. Other terms used to describe the disease were rejected as unsatisfactory for various reasons: the cardinal, clinical features show that the disorder is an encephalomyelitis….Some authors have attempted to dismiss this disease as hysterical, but the evidence now makes such a tenet unacceptable….The organic basis is clear – from the finding that the putative agent can be transferred to monkeys, the detection of an increased urinary output of creatine, the persistent findings of abnormal lymphocytes in the peripheral blood of some patients, the presence of lymphocytes and increased protein concentration in the cerebrospinal fluid of occasional patients, and the neurological findings” (BMJ 3rd June 1978).

Apart from their close involvement with the medical and permanent health insurance industry and the unpalatable fact that their professional lives may be shown to have been spent in a null field of research (ie. trying to prove that ME/CFS is an aberrant illness belief), it remains a mystery as to why, as bona fide mental health researchers, the Wessely School so persistently refuse to engage with the extensive biomedical evidence-base that exists on ME/CFS.

As Dr David Bell said in his book “Faces of CFS – Case Histories of Chronic Fatigue Syndrome” (Lyndonville, New York, 2000): “I have no problem with not understanding the exact mechanism of the symptoms of CFS…I do have a problem with the lack of respect given patients with poorly understood neurological disease”. Bell points out that the chest pains, racing pulse, shortness of breath, flushing, trembling, twitching, difficulty maintaining balance, headache, physiological exhaustion to the point of collapse, inability to walk, and pooling of blood on standing experienced by ME/CFS patients all result, not from what Wessely School psychiatrists deem to be deconditioning or “hypervigilance to normal bodily sensations”, but from the dysautonomia that is so prevalent in ME/CFS (in an effort to supply blood to the brain, the patient’s blood pressure sky-rockets almost to levels that could cause a stroke but then dives, such lability being the easily confirmed hall-mark of classic ME/CFS that was identified many years ago by Dr Melvin Ramsay ).

Bell explains that these symptoms are caused by elevation of adrenaline levels that are released in an attempt to compensate for impaired blood flow to the brain due to blood volume deficits and to problems in the blood vessels themselves, which result in the well-known (post-adrenaline-surge) exhaustion: “(The blood vessels) must be constricted so tight in the brain that little blood gets through.  Perhaps it is one of the hormones that constricts blood vessels.  Perhaps an infection of the blood vessels.  Perhaps it is an excessive sensitivity of the blood vessels to adrenaline….CFS is a devastating physiologic process that undermines the body’s energy and the brain’s cognitive ability….CFS is not…an illness behaviour for lazy people.  The consequences of this illness weigh heavily not only on the victim, but also on family, community and society”.

ME/CFS is an inflammatory disease (Pasi A et al. Mol Med Report 2011:4(3):535-540). Kennedy et al from the Vascular and Inflammatory Diseases Research Unit at the University of Dundee have reported a whole raft of abnormalities in adults (and subsequently in children) with ME/CFS that are consistent with vascular instability and dysautonomia.  These findings include an increase in apoptosis of white blood cells; raised levels of oxidative stress which can damage blood vessels and other organs; increased markers of inflammation, and abnormalities in blood vessel function (Co-Cure RES, MED: 17th May 2010).

Another pressing question must be why the media so frequently fail to report such serious pathology in ME/CFS patients and to rely so unquestioningly on the Science Media Centre to do their work for them. Where is their own intellectual judgment and journalistic skill?

Following the NIH State of the Knowledge Workshop in April 2011, Professor Leonard Jason from DePaul University, Chicago, took part in a televised discussion hosted by Llewellyn King transmitted on 8th April 2011 (The Voice of America, episode #3012) in which Jason said that patients with ME/CFS “get thrown to the psychiatrists….These are patients who are victimised by an illness and then the media further victimises them, and then the medical community also does it”.  Another contributor, author Deborah Waroff from New York, made the point that “UK patients (with ME/CFS) are probably the most unfortunate in the entire world”.

Victimisation by the media is well illustrated in the article on the PACE Trial by Adam Morris in The Edinburgh Evening News published on 15th April 2011: “If implemented, it means patients would be placed on recovery schemes, with thousands benefitting from a new regime of exercise and a ‘positive mental attitude’ ”.

This statement should be compared with the comment by Professor Paul Cheney from the US on graded exercise (made in the UK at the Invest in ME conference in May 2010, proceedings of which are available on DVD from IiME): “The whole idea that you can take a disease like this and exercise your way to health is foolishness.  It is insane”.

Media coverage of ME/CFS remains problematic; comments on the PACE Trial by Vivienne Parry written for the charity AYME (The Association of Young People with ME) published on 14th April 2011 are illustrative.

Ms Parry sits on the Council of the Medical Research Council and was awarded an OBE for services to the public understanding of science.  She is on the Board of the Science Media Centre, whose Science Advisory Panel includes Professor Simon Wessely.  The Science Media Centre itself states: “The team at the SMC is advised by a Science Advisory Panel and a Board”, which would seem to indicate a close working relationship between Ms Parry and Professor Wessely.

Ms Parry is described by AYME as a “highly respected scientific journalist” but her comments on the PACE Trial do not assist patients with ME/CFS because many of them are inaccurate:

·         it is not known “for sure” that two treatments (GET and CBT) are “safe and moderately effective” for people with ME/CFS because it cannot be certain how many patients with ME/CFS as opposed to “CFS/ME” were included in the PACE Trial (“CFS/ME” being chronic fatigue in the absence of neurological signs)

·         the PACE Trial was not “as rigorous a study as it is possible to have”; as a respected scientific journalist, Ms Parry will know that if a trial is not a controlled trial, it cannot be so described

·         it is not quite true to say that it was carried out by “a team of experts”, since 22 of those carrying out one arm of the trial were trainee psychiatrists employed to work at the Kings College PACE Centre, London

·         APT is not the same as pacing, and pacing was not studied in the PACE Trial

·         people with ME/CFS do not have “fatigue as their main symptom”; they have post-extertional fatigability accompanied by malaise as their main symptom (their voluntary muscles do not work properly and are exquisitely painful after exercise)

·         Ms Parry says: “There are two problems here.  One is about science.  Research is about coming up with a hypothesis and then trying to knock it down”. This is precisely why the PACE Trial cannot be considered “scientific”. Although the Investigators’ hypothesis that “CFS/ME” is exactly the same as ME/CFS and that it is a behavioural disorder reversible by CBT and GET was indeed knocked down by the results, the Investigators refuse to accept that the trial failed

·         Ms Parry then says: “Long held, cherished and utterly plausible ideas are regularly demolished by evidence”. This is true, but Ms Parry fails to understand that the results of both the FINE and PACE Trials demonstrate that the Wessely School’s psychosocial model of ME/CFS is wrong and has been demolished by evidence

·          seemingly with no awareness of the paradox in her comments, Ms Parry continues: “This can be incredibly disappointing but you have to move on and ask the next question, not constantly keep asking the same one in the hope that eventually you will get a different answer”.  Refusing to relinquish long held and cherished ideas about the nature of ME/CFS is exactly what the Wessely School have done for the last 25 years, and indeed they continue to do so

·         Ms Parry continues: “Some people also said that the trial was meaningless because it excluded those with a neurological disease, therefore could not have contained anyone who had ME since this is a classified neurological disease.  This is a bit silly because why would you design a trial that excluded the very patients you wanted to study?”.

The answer, Ms Parry, is simple: the Wessely School refuse to accept that ME/CFS is a neurological disorder.

As another, more informed, commentator (JT) has remarked, Ms Parry’s article “is an embarrassment….The trial was not studying the neurological disease ME/CFS but people with chronic fatigue in the absence of neurological signs, or “CFS/ME”….If the Oxford criteria had been applied correctly there would be no people present with ME….People should now be aware that the results were not clinically significant, and there remains little evidence to support the use of CBT and GET in the management of ME/CFS”.

Is it not important that highly respected scientific journalists get their facts right and refrain from contributing to the prevailing media bias about which Professor Jason was so outspoken?

People genuinely cannot understand how individuals who profess to be speaking up for the primacy of science can defend, let alone promote, such a transparently flawed study as the PACE Trial.

The failure of CBT/GET is written in the numbers: even the skewed data presented and published in The Lancet show that CBT/GET are of no clinical value in the cohort studied, and certainly do not confirm that the interventions are safe and effective enough to be generalised to everyone with ME/CFS or even “CFS/ME”

My promised personal remark that has a lot to do with my background is this:

The reason I studied philosophy and psychology - apart from my interests in abstract thinking and human reasoning - is my background: I am the oldest son and grandson of heroes of the Dutch Resistance in World War II, who had a communist background and therefore were discriminated rather than honoured after WW II, and I wanted to know from an early age why such things as concentration-camps are humanly possible.

My answer is, very briefly: Because there are such persons as Simon Wessely, Peter White, Vivienne Parry, Esther Crawley and their likes, who can best be described in appropriate Wesselyan terminology: They are dysfunctional human beings, who lack a conscience that can go beyond out and out egoistic conformism - and I quote:

Conformism: To behave according to the current social norms, ideals and practices.

Conformism is the basis of all social behavior and of all human groups: Without agreements in assumptions, ends and acts no group and no society can exist, whereas the great majority in any group is not capable of developing rational ideas about most problems by themselves.

The essence of all real social conformism is the clear understanding of the conformer that his conformism is a conscious lie, conscious role-playing, intentional theatre, and that his conformism is mostly collusion and deception in cooperation with other conformists, based on the same motives: fear and egoism.

What counts most in (almost) any society - for those who succeed or live peacefully in and with it - is the pretence and appearance of conformism and conformity, based on the conscious effort to conform. The main problem with this is not that this is so, but that many can't do much better than conform, and indeed act wisely by following others, since they don't have the wherewithall to lead themselves.

Alternatively or also, they lack the rational part of their brain, except for having enough to finish school and, perhaps, university (for yes: In these postmodern days lack of genuine intelligence is a major pro for a postmodern academic career). (*)

Also, it is not at all unlikely that persons of just this make-up are "the democratic majority" among ordinary men, or at least among bureaucrats and postmodern academics, for I cannot explain the horrors of the last century, nor my experiences as a person with ME in Amsterdam otherwise, also having seen that Amsterdam was governed by mayors who ought to be highly thankful to my parents and grandparents, but in fact are and were the defenders of the Amsterdam drugs mafia -  which I do immediately grant is much more profitable then doing the job one is paid to do, and so it follows quite logically according to Dutch morality - everybody is equal; everyone deserves respect from everyone - that they would have been utterly insane not to enrich themselves and their families by drugscorruption. (**)

It was similar, in a similar human-all-too-human way in Hitler's Germany, Stalin's Russia, Mao's China - to put it in the words of resp. William Hazlitt and Jung Chang:

  "If mankind had wished for what is right, they might have had it long ago. The theory is plain enough; but they are prone to mischief, 'to every good work reprobate.'" (Hazlitt)

"It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. " (Chang)

But this is impossible to discuss this with ordinary men, except perhaps in extra-ordinary circumstances: Being social, for ordinary men, is to do mostly as most of the others do with whom one is congregrating, regardless from whether they are Romans or cannibals (***), and I also do not see a solution for this apart from science: On a fundamental problem.

As I said, these are my ideas, and Ms Williams - whom I do not know at all - has nothing to do with them, and the same holds for professor Hooper, whose excellent answer to the Pace Trials - not answered by the likes of Peter Denton White - can be found here (also):

And yes... I see I still should make notes to this, and will if I can find the energy. Meanwhile, it is a fine reply by an honourable man to a lot of rot by a dishonourable man and his equivalent cronies.

(*) It is quite possible to be a renowned academic and - compared to really bright persons, who are 1 in 10.000 or less - a fool, relatively speaking. Thus professors Wessely and White are utter idiots compared to their fellow Brit professor Penrose. This does not mean that Wessely and White are fools compared with just anyone; it does mean they lack the intellect of really intelligent men - which in these postmodern days helps one's academic career rather than hindering it, especially in fields like psychiatry and the soft "sciences", where real talent makes a career almost impossible - if one is honest, that is.

(**) The Dutch proverbial saying here consists of a look of deep contempt, a face full of disgust, and the deeply moral question: "You are not a thief from your own wallet, are you?!?! (Du: "Je bent geen dief van je eigen portemonnee, toch zeker?!?!")

Here are the relevant financial facts, no one contests, though the Dutch have some bureaucratic bullshit to the effect it is less, based on "statistical investigations" by state bureaucrats who are paid to look the other way than is consistent with maintaing the Dutch (and European) laws:

Every year between 10 and 50 or perhaps a 100 billion euros is turned over in Holland in illegal drugs. Hardly any Dutchmen cares, except to look the other way as it happens, if they are not in the business themselves (and there are many drugs related murders, that are never solved by the police, is also true).

You may believe that Amsterdam mayors and aldermen are a kind of moral supermen - they themselves like to pretend they are - but I don't, and I know as well as they know, and as anyone with any knowledge of the Dutch laws knows, that they are drugscriminals in the sense of the Dutch laws they were so much paid to maintain as mayors and aldermen. Indeed I suppose with Mencken that

"It is hard to believe that a man is telling the truth when you know that you would lie if you were in his place."

"The men the (..) people admire most extravagantly are the most daring liars; the men they detest most violently are those who thell them the truth."

For most Dutchmen would do a lot to become millionaires, since money is the only moral value the Dutch really honor, praise, and look up to.

So I have now over two decades of pain, in order to make the children and grandchildren of messrs. Van Thijn, Oudkerk, Cohen, Asscher and their likes extremely rich, I must presume, as the most likely explanation why these gentlemen defended the Amsterdam drugsmafia rather than me, and rather saw me gassed by the dealers in hard drugs they protected, than uphold the law for me, as they should have.

Then again, these children and grandchildren no doubt will say that they, or their fathers and grandfathers, made their enormous riches 'with speculating in shares' or 'by our own talents and hard work', no doubt.

And nobody will be able to prove the contradictory, though every Dutchman will "deeply deplore and regret" what has happened during over forty years of Dutch tolerance of illegal drugsdealers protected by Amsterdam's mayors, police, district attorneys and judges - after it has become too late to undo it, and after great chunks of Amsterdam's politicians and bureaucrats have profited from and collaborated with the mafia for decades. To vary Hazlitt

  "If the Dutch had wished for what is right, they might have had it long ago. The theory is plain enough; but they are prone to mischief, 'to every good work reprobate.'"

They rather respect the mayor, the mafia, and their drugscorrupt governments then insist on maintenance of the Dutch laws, or make some money in trading illegal drugs themselves.

I went to Amsterdam's mayor Van Thijn in 1988, who was in hiding as a Jewish boy in WW II, at the time and place my mother was then risking her life in the Dutch resistance precisely for kids like him - and was not received except by his personal doorman Van Heyningen (Van Thijn is a social democrat, and I must surely be an Untermensch, in his reckoning, which I share vice versa) with the message that my parents and grandparent were not in the Dutch resistance in WW II to have their invalid son and grandson gassed and molested by drugs mafiosi.

Since then I only can communicate, if at all, with absolutely no one beyond the level of doorman of the politicians and bureaucrats who have the power in Amsterdam, shared with the mafia, in the interest of both groups: NO ONE ELSE REPLIED, EXCEPT TO SAY THAT THEY WOULDN'T REPLY BECAUSE "YOUR LANGUAGE IS INAPPROPRIATE".

For I don't flatter drugscriminals, and if I would they wouldn't receive or reply either: They are in it for hundreds of millions, supported by anyone who is anyone in Amsterdam; I am in it as one unique invalid individual who is no one in Amsterdam, because anyone who is, is - both by my moral norms, and by the Dutch laws since I was born - a criminal bastard, usually from the Dutch Labour Party, or else is their willing executioner as bureaucrat, or else their willing journo whore.

(***) The saying is by St. Ambrose

Si fueris Romae, Romano vivito more:
si fueris alibi, vivito sicut ibi.

Usually translated as 'If in Rome, do as the Romans do.' which is to say: 'If with cannibals, do as the cannibals do.'

The alternative is mine, from when I was in my teens, because I found it obviously absurd, though it is an article of faith of the Dutch: "Act normal, then you act madly enough".

Etiamsi omnes, ego non!

P.S. Corrections, if any are necessary, have to be made later.
-- Apr 19, 2011: Correct a few spelling mistakes I noticed.

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

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many 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)

Short descriptions:

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:
   "it is wrong always, everywhere, and for anyone, to believe anything upon insufficient evidence".
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

    "Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)


See also: ME -Documentation and ME - Resources

Maarten Maartensz (M.A. psy, B.A. phi)

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