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
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
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
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
These mighty patients' minds have started a new thread
on MECFS, entitled as follows, including the spelling mistake
"Help Amy D.M. Cover Our
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
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
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
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".
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
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.
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