Nederlog

 

 March 22, 2011

 

me+ME: Another good article on ME/CFS in the Wall Street Journal



There was no Nederlog yesterday, and I do again have sleeping/pain problems (too much pain to sleep enough; not enough sleep to enable my body to do something about the pain), but then I have been here before, many more times than I like to recall, except for the purpose of reminding myself I probably will get over this as well.

To the subject my title indicates:

I was emailed this morning a link to another fine article by Amy Dockser Marcus in the Wall Street Journal:

It starts as follows:

As scientists race to find a biological cause for chronic fatigue syndrome, long considered by many doctors to exist in patients' heads, the National Institutes of Health could shed new light on the debate at a major scientific workshop on the disorder.

Researchers at the University of Utah and elsewhere are working to create diagnostic tests, based partly on proteins or other markers that appear to show up in greater quantities in patients with chronic fatigue syndrome. Diagnosing the disorder is difficult, in part because symptoms vary among patients.

Other scientists are trying to understand why other infections, such as mononucleosis, appear to prompt chronic fatigue syndrome in some patients. And in a program at New York's Columbia University, researchers are seeking to identify pathogens that may appear prominently in patients with the disorder. Researchers will be testing "for all those agents that we know affect vertebrates on this globe," says Mady Hornig, who heads the Columbia program.

Ms. Marcus has quite a lot more that's quite hopeful for patients, and certainly is informed, including - I skip quite a bit - this:

At the University of Utah, researchers are working on what they hope might ultimately lead to a test for chronic fatigue syndrome. Forty-eight patients with the disorder and healthy controls are involved in a trial in which they undergo a 30-minute exercise challenge. Even after moderate exercise, there were increases in gene expression markers in the blood for two days that allowed researchers to distinguish chronic fatigue syndrome patients from healthy controls.

More than 100 scientists, researchers and advocates are expected to gather at the NIH workshop in Bethesda, Md., attending sessions focused on such medical topics as infectious diseases, systems biology, immunology and neurology. By contrast, the last NIH scientific workshop, in 2003, had more emphasis on the psychological aspects of the disease, including stress, insomnia and depression.

My reasons two select these two consecutive paragraphs is that the first ties in very well with the complaints my ex and I have since January 1979: We could do no such things, or if we did because we had to, because both of us were then first year students of psychology, on grants or loans, and had to make a minimal number of study points to retain the right for a further year of grants or loans, we found this often crashed us, for days or weeks on end.

And the second is hopeful in that the right approaches are stressed: ME/CFS is not a psychiatric condition, not according to the World Health Organization, not according to my own doctors, and not according to me and my ex, not to speak of most other patients with ME/CFS, and while there are several groups of psychiatrists and psychotherapists who insist it is a psychiatric condition, any decent rational scientist whose mind has not been clouded by excessive amounts of psychoanalysis, should and can know that what these psychiatrists claim about ME/CFS, namely that its patients have it because "they have dysfunctional belief systems" and are themselves responsible for thinking themselves ill, is quite evidently pseudoscience, from self-styled "scientists" who are incompetents in real biomedical research and dishonest and immoral in the ways they write about ME/CFS and those who have it.

Ms. Marcus continues the above and concludes her article as follows:

Medical history has other examples of diseases that were not taken seriously but later turned out to have biological causes. Multiple sclerosis was once misdiagnosed as hysteria or chronic alcoholism. Today multiple sclerosis is suspected to be an auto-immune disorder. Stomach ulcers were thought to be caused by stress until two Australian scientists proved the bacteria Helicobacter pylori was the cause, work that won the Nobel Prize in 2005.

"The door has been opened by the retrovirus,'' says Mary Schweitzer, a former history professor who has chronic fatigue syndrome and was tapped to serve on the steering committee planning the NIH conference. "Now we want to bring in all the scientific research that is being done."

Quite so! Speaking for myself - a philosopher/psychologist in his 33rd year of the disease, which I have since I was 28 - I am quite glad and thankful there are articles like this in the Wall Street Journal, for Ms. Marcus wrote some good articles on ME/CFS before, see e.g. me+ME: Two good articles on ME - NYT and WSJ.

There are a some patients, though, who are gathered, it seems, in the MECFS-forum that excludes me and forbids me access since July 2010, because I did criticize what seems a personal friend of the owners, who wrote a ream of articles on that forum in which he propounded a neo-Nietzschean version of the thesis of Beard and McEvedy that persons with ME/CFS are neurasthenics, all with the active protection of the owners of that forum, currently, it seems, also owners of what they are pleased to call "IMEA".

The owners of that MECFS-forum - a coward who calls himself CFS_Since_1998 and Ms. Patricia Carter who favoured poisoning the blood in US bloodbanks in order to get attention, rather publish and protect evil or insane crap than one who has the talents and courage to say "No, this is bullshit!", while the silent majority of ordinary folks pretend to see no harm in any wholly anonymous person who claims to have ME/CFS and who has flattered them ("Our Community!").

In any case, Ms. Marcus has been promised, effectively, to have her ears washed or boxed, her fallacies exposed, and her life, opinions and thinking improved by some of the noble anonymous folks on the MECFS-forums who claim to have ME/CFS, and have mighty big mouths, but no sites of their own, no real name of their own, no academic education to speak of, and indeed are either blessed with average brains or suffer continuously, as some of these selfstyled action heroes have done, from "impaired brain functions" that keeps them from reading all prose by any rational person, while sending out reams of moronic, ill-written and ill-spelled emails to folks they find fault with.

These mighty patients' minds have started a new thread on MECFS, entitled as follows, including the spelling mistake

"Help Amy D.M. Cover Our Story Propperly!"

in which Ms. Marcus - who according to this highly qualified patient with a repeated diagnosis of ME/CFS since 1989 by medical specialists, and after 32 years of past illness with it, and with the best possible MA in psychology, did quite well - is being promised

What would probably be best is a whole bunch of emails, some listing all the issues, and some dealing with one or two of them in depth.

Some patients - not: all or most - are morally and intellectually little better than Maoists, it seems to me, and thus are very willing to enforce a re-education on anyone who does not see or evaluate the world quite like they do, and to treat a person who clearly does her best to write good and informed articles on a rare disease, in one of the major journals in the US and the world, as if she cannot think for herself.

Well... for what it is worth: I think Ms. Marcus did very well, and I do not expect nor require anyone to see the world or my disease as I see these, and that also without giving her any permission for deviance, and open to public but quite anonymous condescension on some forum, if she deviates from The Hallowed Party Line, as this was handed down on ME/CFS-Forums to the PC members by their would be leaders, such as Patricia Carter - selfstyled "Director" of "the IMEA": "Many people like to lead, if only a flock of sheep" (Sancho Panza) - whom I like as little as she likes me, but who does not have my abilities and degrees, which in populist and ignorant environments is a strong rather than a weak card, alas, while also, unlike Patricia Carter, I don't lie about those I disagree with.

Then again: What is also true is that I can understand the anger and frustration of very many patients, since many of them have been pooh-poohed by medical persons and journalistic persons for many years - in which the patients suffered, sometimes quite abominably also, even unto real death, and the medical and journalistic persons mostly avoided doing any decent research into the causes of their suffering, and avoided doing so by quite obvious appeals to prejudices and fallacies.

But Ms. Marcus, as far as I have seen her articles, is well informed about ME/CFS for a journalist, knows quite a lot about ME/CFS, and writes well about it - without my necessarily agreeing with all she wrote, but then again: demanding such agreement is just not fair and quite silly as well.

For me, this is a good article by a journalist who means well and does well. I see no reason to try to re-educate her (this is anyway an idea I strongly dislike) and every reason to be glad that she writes as sensibly and as informed as she does, and does so in an important daily journal, and as far as I can see on the side of the patients and scientific truth, even if some patients would like her to write more like they see things.

Nobody is perfect, and as the world is, and as men and women are, on average, to see an honest rational person doing his or her best, in an important but unpopular subject, is quite heartening.


P.S. Corrections have to be made later.
-- March 23, 2011: I have replaced "Mrs. Marcus" by "Ms. Marcus", since, being Dutch, I was not aware until today of the proper use of "Ms." since the 1980ies, that is explained here: Ms. (<- Wikipedia) and confused it with "Miss".

Incidentally, having used the phrase with the link " any decent rational scientist whose mind has not been clouded by excessive amounts of psychoanalysis," here is the link explicitly

This summarizes a lot of learning, that pseudoscientists, and even honest psychiatrists and psychologists, almost never have.

Then I should say also something about the pretensions of quite a few patients that they know science and can correct scientists:

Very few patients with ME/CFS whose posts I have read own up to having any relevant university degree in science, and rather a lot of the patients whose posts I have read clearly have hardly any idea of what real science is like.

Now I do not think there is any moral demand for any patient of any disease to understand, or indeed to be capable of understanding, the science that is or may be necessary to explain the disease. Indeed, as the saying is - Dutch, with an interesting exposition on geniuses - One does not need to be a baker to be able to pronounce confidently that bread is rotten.

Furthermore, I do think patients with ME/CFS, especially those - like me - who have it for many years or several decades, are quite justified in complaining and being angry about the psychiatric pseudoscience and pseudoscientists who produced much bullshit and confusion around ME.

Then I do think that if one never made any degree in any relevant science (or if the degree was so lousy and minimal it doesn't bear mentioning) one should mostly not presume to tell research scientists how they should conduct their research or what science "really" is - but many patients nevertheless do so, in fact on the basis of strong prejudices about science, and on the ground of a conviction that they, as patients, are specially qualified to speak, write and be heard. And so they are, up to a point: About how it feels, why it is serious, and how they have been mistreated. But not including: How biomedical research should be done and what biomedical scientists should and should not do and think.

Also: These persons - real biomedical scientists, these days also a small minority of the  nominally academically educated and employed persons, embody the rational hope for persons with ME/CFS, and indeed also for patients of many other illnesses, and quite unlike the majority of academically employed psychiatrists and psychologists (1) they generally know real science and (2) they generally mean well and (3) they often do not have any personal financial or career interest in their science coming out thus or so.


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 (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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