26 januari 2010


Good article in The Times about ME


     CFS, along with PVFS and ME, are listed by the WHO since 1992 under the ICD-10 G93.3 as an organic brain disease and are specifically excluded from a psychiatric listing under F48
     -- From Neuroskeptic's Blog
    "We never hurt each other but by error or by malice."
     -- (Sir Robert Chambers/Dr. Johnson,
     A Course of Lectures on the English Law, vol I)

There is a good article about ME in The Times of January 25, 2010.

I will quote and address some points it raises, but I start with noting that over the past 32 years of having ME I have read few articles in the paper media about ME that were good, and that this also holds for the - so called - quality papers.

For this sad fact - that an important health topic does not get properly discussed in the media - there seem to be quite a few reasons, of which four important ones seem to be these:

  • ME started its media-career - so to speak - in a bad way, namely by being named "Yuppie-flu" and by not being taken serious at all as a serious organic disease, which continued, if possibly not to the same extent, after ME was renamed by some medical committee as "Chronic Fatigue Syndrome" (a bit like medically renaming a paraplegic as suffering from the disease "Chronic Transport Problem").

  • As a rule, journalists are not scientists and don't know science, or if they do, they certainly are not able to talk with scientists as peers, with regards to the science the scientist specializes in.

  • It so happened that a group of psychiatrists and psychotherapists has decided - without any scientific evidence - that it is in their professional interest if many diseases that have not yet a known well-researched organic, biochemical, physical basis, are rebranded, restyled and reclassified - in the media and amongst health-professionals - as if they were psychosomatic, mental, functional, delusional or whatever the accepted terminology may be to make these complaints amenable to large doses of insurance-paid psychotherapy or psychiatry, and ME, that so far has not a known physical cause but has many sufferers, was high on their agenda.

  • Although there is excellent evidence since decades that ME is, in very many cases, a serious organic disease with many established pathologies - and journalists with little time can consult "Ten discoveries about the biology of CFS"(*) by Anthony Komaroff MD, professor of medicine at Harvard medical school - and although the World Health Organization has classified ME since 1969 as a serious organic disease, and in 1992 explicitly has denied that it is a psychiatric disorder, the group of psychiatrists and psychotherapists who have decided to exploit ME and its patients for their own interests are top in the medical/pseudomedical fields as regards playing to the media, and in taking seats in medical and political committees, and in presenting their own pseudo-sciences as if it were the best "Evidence Based Science" there is.

Hence it has been difficult for a long time for real scientists working in the field of ME and for real patients suffering from ME to get any good hearing in the media, or even to get as much as a non-biased hearing in the media. (**)

Even so, The Times yesterday published a good article on ME by Penny Wark. You can find it under the link, with the title "‘Doctors, school, friends thought I was faking chronic fatigue syndrome’" (***)".

It is based on an interview with a patient with ME, Nicola Warner, and on some further investigative journalism by Penny Wark, to which I turn now. She writes

As Nicola discovered, ME has long been the butt of scepticism and it was only in 2002 that Sir Liam Donaldson, the chief medical officer, recognised it as a clinical condition.

As I am not English, I do not know what moved Sir Liam not to do this before 2002, in view of the above quoted position of the World Health Organization (WHO), nor why he did not do it later, but such is undoubtedly the fact: In many countries, it are presently employees of the state that decide which diseases are to be regarded as diseases, rather than doctors who treat them or patients who have them. (There are some good reasons for this, if only to prevent medical fraudulence, but - in my opinion - this is not so when it goes against the rulings of the WHO, that also is not moved by political or financial biases of any particular state.)

Wark says a little below this

Even so it has been hard to shift the suspicion that the condition is a malingerers’ charter and that it has a psychological basis, a proposition fiercely resisted over the years by vociferous campaigners. In the past their arguments were often emotional but today ME charities are more likely to refer the media to a relevant professional.

That ME "is a malingerers’ charter" is NOT due to patients nor to the doctors who treated them, but is the doing of the psychiatric and psychotherapeutical folks mentioned - and one of the things these psychotherapeutical media-professionals out for patients have now for three decades "forgotten to mention" in their many very friendly talks with the media, is that there are many like me: Someone with the best possible MSc. in psychology, an excellent B.A. in philosophy, now for decades condemned to the dole, with no help whatsoever, and 16 hours per day or more in bed.

And indeed Nicola Warner is another of the millions of patients who lost almost everything by getting ill with ME, and who clearly had nothing to gain by having to depend on the dole and on civil servants that treat one as if one is a malingerer, simply on the strength of what they have read or seen in the media.

A little later Wark says

Such is the hostility engendered by the debate that medical professionals who view ME as a psychiatric disorder declined to contribute to this article. “My views are too controversial to publish,” says one who believes that many patients develop ME, also known as chronic fatigue syndrome (CFS), in the context of work-related stress.

I regard that as both a clever and a cowardly move by one of the "medical professionals who view ME as a psychiatric disorder", and also as a lie: Such views have been published ad nauseam the last 30 years, and a supposed scientist who in a democratic state makes a claim as I just quoted seems to try to manipulate the media by insinuations. And in any case, what this clever but cowardly person very probably "forgot to mention" is that what he claims is completely against the rulings of the WHO about ME since 1969 and 1992. (Also, somebody who claims ME is caused by "work-related stress" not only controverts - knowingly, no doubt - much scientific research into ME, but also leaves unexplained why some 6 billion persons survive the daily stresses of work and life without getting ME.)

Penny Wark continues:

“It’s like a battlefield,” says Dr Neil Abbot, operations director of ME Research UK. He describes the lot of the ME patient as a “Kafkaesque nightmare”.

That indeed - a “Kafkaesque nightmare” - is a quite apt phrase, if you have been told for 30 years that you are a fraud, a liar, a malingerer, or at best a mentally deluded pinhead with Yuppi Flu, especially if, like tens or hundreds of thousands with ME, you have excellent academic degrees and never showed any sign of insanity (except that, after 15 or 20 years of being told this, it may happen that you get angry if you are being told that you are these things, for the thousandth+xth time also, which then of course counts as proof positive that you are being unreasonable, impatient, impolite, and not sufficiently impressed by the science and moral integrity of such folks as could manage the difficulties of qualifying in "sciences" like psychology or psychiatry, "all honourable men").

In any case, as Wark notes, here is one effect:

The scientific literature remains small: 2,500 articles over the past ten years compared with 20,000 for MS.

I skip some and arrive at Penny Wark's summary of Dr. Charles Shepherd's ideas:

The ME community’s wish-list is summed up by Dr Charles Shepherd, the medical director of the ME Association. First, there is a need to find out how many people have the condition, because only then can their clinical abnormalities be assessed and effective health services planned. Second, there is a need for research, in particular into muscle abnormalities, the role of the immune response to infection, and the extent that common neural pathways are involved in chronic fatigue in ME and other illnesses such as Parkinson’s and MS. Third, there is a need for trials of potential treatments.

This is fair enough, even though personally the first point seems to me somewhat disingenuous e.g. because one needs an organic causal explanation "to find out how many people have the condition", and I have been waiting more than 32 years and more than half of my life now to see it happen that "clinical abnormalities be assessed and effective health services planned".

Why are clearly ill people with ME not helped with their disease, if clearly ill people with MS and many other diseases with an unknown or ill-known course are helped? Is it because too many journalists have been relaying the pseudo-scientific twaddle about ME by psychiatrists and psychotherapists to the public at large? Why are the clear rulings of the WHO not followed in England? What is moral or indeed legal about letting people with ME rot for decades in their beds without money or help?

Wark gets more to the point in the next paragraph

Shepherd points out that the impasse that surrounds ME is partly caused by the difficulty in defining it. “This is an illness that cuts across medical boundaries: immunology, endocrinology, neurology, muscle pathology, infection and gene expression. There is piecemeal research going on that is not taking account of the links that are probably there. ”

With all due respect for dr. Shepherd, who probably does not feel free to speak his mind freely, "the impasse that surrounds ME" is only VERY "partly caused by the difficulty in defining it". After all, ill people have been treated humanely, even in England, for ages, although the causes of their diseases were generally unknown, simply because they were clearly suffering.

If this has been different the last decades, especially in England, and especially with regards to ME, it seems this must be explained by the many efforts of the psychiatric and psychotherapeutic pseudo-scientists to make it appear as if ME is a psychiatric disorder, and to bring it about that only (or primarily) psychiatrists and psychotherapists can give therapies to patients with ME.

Let me again stress that these psychiatrists and psychotherapists have been doing this expressly (1) against the rulings of the WHO (2) without having themselves any of the scientific qualiications (in immunology, endocrinology, neurology, muscle pathology, infection and gene expression, not to speak of physics, statistics, philosophy of science and logic) to do so on rational scientific grounds and (3) without remaining within the boundaries of the medical professional codes of behavior, that include Hippocrates' "First do no harm" and indeed (4) without remaining within the boundaries of The Universal Declaration of Human Rights.

As to the last point, I quote from The Universal Declaration of Human Rights:

Article 22.

  • Everyone, as a member of society, has the right to social security and is entitled to realization, through national effort and international co-operation and in accordance with the organization and resources of each State, of the economic, social and cultural rights indispensable for his dignity and the free development of his personality.

Article 25.

  • (1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

I arrive at the opinions of dr. Holgate as rendered by Penny Wark:

Stephen Holgate, professor of immunopharmacology at the University of Southampton, chairs the Medical Research Council’s expert group on CFS/ME. “As a clinician who sees patients with this group of diseases I recognise there’s a real thing here, it’s not all psychiatric or psychological,” he says. “Unquestionably in some of these patients there are abnormalities and biochemical changes in the brain, the central nervous system, the spinal cord or the muscles. My personal view is that we’re not dealing with a single condition.”

Here I must suppose that dr. Holgate is speaking very diplomatically, though I appreciate and welcome that he says "there’s a real thing here, it’s not all psychiatric or psychological" - whatever his precise intent or meaning here.

However, since I did have a scientific education, it would seem to me that if

"there are abnormalities and biochemical changes in the brain, the central nervous system, the spinal cord or the muscles",

any real scientist would and should first concentrate on these, while he may well privately reflect that to call these "psychosomatic" or "somatoform" or "malingering" might well be sufficient cause for him, if he - as a medical professor - were at the receiving end, to hire a lawyer and seek compensation (which he might very well get, in view of the WHO rulings on ME, and his degrees in medicine, and the dangers to his health, wealth and chances on a happy life if misdiagnosed).

Finally, there is a somewhat curious passage, that starts with a remark by Penny Wark, that I suppose is a summary of what dr. Holgate was saying:

The MRC [Medical Research Council - MM] is ready to commission more research on ME, he says, but the stigma and scepticism associated with the condition do not make it an attractive option for top quality scientists.

Personally, I'd guess that real "top quality scientists" are NOT frightened by this, and indeed that a few "top quality scientists" HAVE and ARE not been frightened by this, but Wark continues as follows:

“The debate is so polarised that scientists are frightened to get involved,” says Holgate. “My aim is to get everyone round the table, so that instead of people throwing bricks at each other we can agree on the priorities, get some quality proposals written up and build confidence in the research community. The need for more research is urgent because what’s happening now is unacceptable for patients and it’s costing the Government a lot of money.”

Of course, if you are a "top quality scientist" the least you need to do top quality science in a medical field is research funding - and of that there is very little, precisely because the psychiatric and psychotherapeutical pseudo-scientists have been trying for decades to prevent that the study of ME gets funded in a way that real science can do real research into it.

But I am willing to assume that dr. Holgate means well, and is a more diplomatic sort of person than I am (and also a person with far less pain than I have, I sincerely hope), and that he does succeed in getting a lot more money into funding real scientific research into ME.

Even so, I do like to remark that if it is true - as I suppose it is - that his present aim is

 "that instead of people throwing bricks at each other we can agree on the priorities, get some quality proposals written up and build confidence in the research community",

the reason this has not been done over the last 32 years that I have suffered from this disease is that the pseudos have taken over a considerable part of the science that should have been done but was not, and that it is a shame to have to read that apparently the activities of these pseudos has so much upset the course of real science that for over thirty years there has been no agreement on priorities (other than those of pseudos), there have been no quality proposals (but much pseudo science), all with the result that many people have no "confidence in the research community".

Concluding: As I said, this is a good article in The Times about ME:

It seems fair; it is based upon some research; it reports the various views; it gives some insight into the difficulties that real medical doctors and real scientists have in their struggle to remove the part of medical science including research funding from the manipulative hands of the media-savvy pseudos; and it also managed to give a patient with ME a fair hearing.

Like nearly all things in life, it also could have been better, but if more journalists over the past 32 years that I have ME had reported about it as in the article I have just reviewed, it is very probable that much more real scientific research into ME could have been done, who knows with what results.

The scientific and moral problem with ME is not that doctors cannot explain it, but that patients get no help and no support, all on the strength of the intrigues and lies of a handful of pseudo-scientists in psychiatry and psychotherapy, who are not even qualified to pronounce with any rational conviction on the possible causes of ME.

Happily, there are some capable real scientists who have done and are doing impressive real scientific research into ME.

It is high time that at long last they get properly and proportionally funded, as it is high time that at long last patients with ME get the same sorts of rights and benefits other people with diseases also get.

P.S. Some background links

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?

Short descriptions:

1. Ten reasons why ME 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.


(*) Two notes here: 1. Personally - like many people with ME - I do not like the name "Chronic Fatigue Syndrome" since it is a term that is seriously misleading about my complaints and - I suspect - designed to pooh-pooh its patients, because so many diseases are accompanied by chronic tiredness. Therefore I like to avoid it. 2. There has been done a considerable amount of real scientific research into the causes and symptoms of ME. Here is a link to a good medical report to the Canadian government - which, it is also true, is mostly medicalese and not journalistic prose.

(**) There are two reasons for the media's failings as regards ME, broadly speaking, it would seem: First, the psychiatric and psychotherapeutical folks, who don't do real but pseudo-science, have much more time and training in charming journalists, and indeed may be highly gifted in precisely that field, and second, journalists have been trained on the principle of letting both sides to a conflict speak, while meanwhile steering their own course mostly in the middle of the road. (In cases where the truth is definitely on one side only - "There were no German concentration-camps", "ME is all in the head", "2+2=5, as Comrade Big Brother says" - this does not make it easy to find the truth from the media.)

(***) That one's complaints are not taken serious is a common finding of people with ME, which testifies to the extent the pronouncements of pseudo-scientists specializing in psycho-babble have been popularized by the media - for to treat an ill person as if that person "is" or "must be" a  "faker", a "malingerer" or a "fraud", or indeed "mentally ill" on no other evidence than that the person complaints of feeling physically ill while such tests as the G.P. has done provide no evidence for a known disease with known biological markers, if not outright insane, is most impolite, if not, in a human-all-too-human way, somewhat inhuman.

But perhaps La Rochefoucauld had it pat for most people:

"We have all sufficient force to support the ills of others."

Or as Montaigne said, in a somewhat different context:

“It is putting a very high price on one’s conjectures to have someone roasted alive on their account”

Rephrased for ME:

“It is putting a very high price on the conjectures of commercially interested modern witch-doctors to condemn ill people to decades of discrimination, abuse, and pain without providing any help”.

Maarten Maartensz

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