Back to me with ME again, after some excursions into politics with
Aristotle and Hazlitt:
There were recently two good articles on ME in the New
York Times and the Wall Street Journal, that were less well received
by some patients with ME, unfortunately, and also an interesting bit
by Neuroskeptic, who is an English neuroscientist, on the relations
between science and journalism, so I'll review and like these, because
all three make a lot of sense to me:
1. David Tuller in New York Times on
the definitions (ab)used for ME/CFS
2. Amy Docker Marcus in Wall Street Journal on the
3. Neuroskeptic on journalists reporting science and
I'll also say something about my take on XMRV under 2.
1. David Tuller in New York Times
on the definitions (ab)used for ME/CFS
Mr. Tuller wrote well about ME/CFS - as I prefer to
call it, being diagnosed by medical professionals repeatedly as having
ME, and disliking the CFS terminology as misleading, while knowing
this is the term mostly used in the US - before in the New York Times,
and did so again on March 8, with an article linked here
This is in line with what I wrote on
February 19 and 22,
with this difference that Mr. Tuller writes with more politeness and
kindness than I did, as indeed he should, when writing in the NYT on a
controversial disease (and see 3. below). But here is my own not so
very polite version of the argument
whole PACE-rot is what one gets if one "researches" all "fatigued"
individuals as if they suffer from the same disease,
conveniently labelled Chronic Fatigue Syndrome, in wilfull denial
of the WHO, that calls it ME since 1969, and insists it is a
neurological disease, and then applies
to a subgroup with a serious neurological disease.
This is pure fraudulence, pure pseudoscience, and it has been
done and is being done on purpose. See:
On natural philosophy, philosophy of
science, and psychiatry, in particular the end: Psychiatry
is pseudoscience since its inception, and the reason is that there
just is not the requisite knowledge of the brain to support almost
any of it.
and my defenses for my lack of politeness are that I
am not a journalist; that I have the disease for the 33rd year without
help; that I am qualified as a psychologist and philosopher of science
to make these judgments; and that I really believe that the
PACE-trials are pseudo-science, and intentionally so, by its English
But I will leave that out, and instead quote Mr.
The Lancet authors [viz. of the PACE-Trials] “have written their
case definition to include both people with major depressive
disorders and patients who clearly have received an insult to their
immune systems and are depressed because they can no longer do
things that they used to,” said Dr. Andreas Kogelnik, an infectious
disease specialist in Mountain View, Calif., who treats many people
with chronic fatigue syndrome.
In studying the condition, he and other researchers exclude
patients whose only symptom is fatigue, however disabling, and
instead rely on a case definition that includes other cognitive,
neurological and physiological symptoms. Those symptoms, they
believe, indicate a complex immune system disorder possibly caused
by a virus or another agent.
Quite so - and here is a popular exposition by two
scientists who were involved in writing the CCC-definition of ME/CFS,
that's most acceptable to patients like me:
This is probably the best exposition of what is
scientifically known about ME/CFS
in one file.
Here is more from Mr. Tuller (and I removed two
“You have to really define the characteristics, and everybody has
to use the same criteria, because otherwise you’re calling something
an apple and someone else is really looking at a peach and calling
it an apple,” said Dr. Anita Belman, a neurologist at Stony Brook
University who conducts research on pediatric multiple sclerosis.
No one disputes that many people with chronic fatigue syndrome
also suffer from depression. The question is which came first. Are
patients depressed because a terrible disease has robbed them of
their lives, or is the illness itself a somatic expression of an
Quite so - to which I add that (1) it is quite common
and indeed quite common-sensically understood that people who have
been ill a long time also grow depressed because they don't get better
and (2) in my philosophically sophisticated eyes depression also is
somatic (as manifested by their reacting to anti-depressive medicines
like Prozac), which I remark not because I want to be sophisticated,
but because the whole concept of "somatoform disease" - hypochondria
with a modern name - seems nonsensical to me: If there are
hypochondriacs, then these too are what they are because their brains
malfunction, not because their soul or psyche deluded their bodies.
Again more from Mr. Tuller, reporting a study by Dr.
Jason - and the "empirical case definition" is the variety my bold red
phrases above refer to:
The study suggests that the disease centers’
“empirical case definition has broadened the criteria such that some
individuals with a purely psychiatric illness will be inappropriately
diagnosed” with chronic fatigue syndrome, wrote Leonard A. Jason, a
professor of community
psychology at DePaul, and his colleagues. The authors also noted
that using the new screening tools, the C.D.C. had greatly increased
its estimate of the prevalence of the illness, to 2.5 percent of the
population, or four million Americans.
That is: On the psychiatric diagnosing definition
there are - very probably - far more persons with "CFS" - some form of
chronic fatigue - than there are persons with "ME", as described above
in the Canadian Criterions
Overview - and the very real problem for people with ME is
that they are declared, by prejudiced or biased reasoning, it seems to
me, to be of the same group as those with any kind of chronic fatigue,
rather as if one "must" have some problems with love if one complains
about pains in one's heart.
More by Mr. Tuller, indeed his last two paragraphs:
So the question remains: can therapy and exercise help patients
with chronic fatigue syndrome, as the Lancet study reported?
Yes, apparently — if the illness is identified with a case
definition relying on fatigue alone. But does the evidence from that
study prove that these strategies would help patients identified as
having chronic fatigue syndrome through very different criteria?
That is a much tougher argument to make.
The answer to the question of the first paragraph is
best given in logico-philosophical terms: "It all depends on what you
Possibly, the answer is a qualified "yes", as Mr.
Tuller suggests, but then the people who would be helped would not
have ME although they complained about fatigue (as may
happen for many reasons, and as a symptom of many diseases),
whereas, much more seriously for those with ME, they strongly risk
being seriously hurt and made much more ill by the program the Lancet
study endorses. See e.g.:
On 'exercise as therapy for ME' : The
And my own answer to Mr. Tuller's last question is
indeed an emphatic NO: I am in the 33rd year of this illness, and I
have been forced to "exercise" much more than I would do
if I could listen to what the pains in my arms and legs tell me, and
it is quite conceivable to me that I am ill since more than 32 years
simply because I am forced to "exercise" much more than
I reasonably can, simply to get do the shopping and clean my house
This is a good article, and it deserves reading all of it:
Defining an Illness Is Fodder for Debate.
2. Amy Docker Marcus in Wall
Street Journal on the XMRV-saga
Ms. Marcus (as I shall call her, noting as an aside
there is a mrs. Barcan Marcus who did fine things in mathematical
logic, not knowing whether she is called Docker, Docker Marcus, or
Marcus), like Mr. Tuller, wrote before on ME/CFS and did so well and
There is a recent article of her, even on the
frontpage of the Wall Street Journal:
I like it, but some patients who know much less about
science and scientists than I do, do not, for reason like this
Stuart Le Grice is skeptical about XMRV's role in the
disorder. As head of the National Cancer Institute's Center of
Excellence in HIV/AIDS and cancer virology, he is sympathetic to Mr.
Miller and other patients. But he insists that science can't be
rushed. Desperate patients who want immediate answers risk diverting
attention from essential research. "There's a danger of deflecting us
from what we really want to do," Dr. Le Grice says.
The reason patients object is that they believe XMRV
is the cause of ME/CFS. My own view is that I don't know; that there
is no proof it is, nor a proof it isn't; and that anybody is free to
think what he pleases, and to say most of what he thinks as well.
Indeed, if I had a say in it, I'd prefer ME/CFS is not
caused by a retrovirus, but then my preferences have little or nothing
to with what the natural facts are. Also, given that so much around
XMRV has not been settled yet, in a rational and scientific fashion,
and given that some, like Dr. Deckoff-Jones and her daughter, seem to
have rather spectacular success with clinical trials of
anti-retrovirus medicines, there is a distinct possibility some with
ME/CFS do have a retroviral infection.
Ms. Marcus continues her previous paragraph with the
The two viewpoints show the gaping divide between many
chronic fatigue syndrome patients and scientists studying the disease.
Although research linking XMRV and a family of retroviruses to CFS is
still preliminary, an emotional debate has exploded over whether the
finding is correct.
Quite a few chronic fatigue syndrome patients
protested against this, but it seems to me a correct desctription of
the facts - as indeed also seems rather natural, in that patients with
a disease will feel another type of urgency than healthy scientists
A little later Ms. Marcus writes
The Internet has given patients the ability to
organize and rapidly disseminate medical information—and rumors as
well. Patient advocacy groups are increasingly powerful, involved in
central endeavors such as funding research and collecting samples
critical to experiments. Patients say they bring a sense of urgency,
forcing scientists to collaborate in order to speed up the search for
therapies. They say that scientists often pursue research questions
that are intellectually interesting but bring them no closer to
finding cures. Scientists warn that putting early science in the
public spotlight can not only slow down research, but also backfire.
"The faster we try to go, the bigger chance we have of overlooking
some small but important point," Dr. Le Grice says.
This seems also quite correct to me, and indeed I have
myself never bothered any scientists with private e-mails, even
though, unlike most patients with ME/CFS, I have the disease for the
33rd successive year, and have excellent degrees in relevant fields.
My reason not to mail persons like dr. Alter, dr.
Mikovits and many others is that I do have a fair idea what real
science is and how real scientists work, and I really do not know
their fields of science well enough to have a rational hope that I can
tell them anything they can't think of themselves, in their own time,
and that I respect them enough so as to hope that they get all the
time they require to do good science around ME/CFS. (Besides, I don't
like spam myself, nor am I fond of persons who tell me what I ought to
think or feel about something.)
Again a bit later, Ms. Marcus writes
Eager to find treatments and suspicious that their
condition is not being taken seriously, patients have accused some of
the scientists of taking too long to get answers. Patients say some
scientists are even deliberately setting up experiments designed to
fail to find XMRV.
After the Centers for Disease Control and Prevention published a study
in July that didn't find XMRV in either patients or healthy people,
patient advocate Mindy Kitei wrote on her blog that CDC didn't want to
"If the CDC had found the retrovirus," she wrote, "it would have
negated its 20-year affair with chronic fatigue syndrome as a
Here I believe both Ms. Marcus and Ms. Kitei are
On Ms. Marcus side, I say that I have seen a large amount of writing
about XMRV by patients with ME/CFS that did not strike me as rational
or informed; on Ms. Kitei's side, I say that (1) ill people have no
duty to be informed about science, though it would be nice if they
were, and that (2) the problem with the CDC is that it really has
published a lot of nonsense about and around ME/CFS, as has been
detailed by Hilary Johnson in Osler's Web: It is not as if the CDC has
behaved, published, spoken or done the reasonable, rational,
scientific or moral thing the last two decades of their involvement
Ms. Marcus continues the above quoted paragraphs with
"Most of the public is not accustomed to evaluating
early stage science, and they don't understand how vague things are at
this point," Alan Dove, a science writer who trained as a
microbiologist at Columbia University, commented during a podcast,
"This Week in Virology," that discussed XMRV.
That's quite true, but then again if you are a patient
with ME/CFS, especially if one has some decent knowledge of the
enormous amount of pseudoscience that has been published about and
around ME/CFS since the late eighties of the last century, I do
believe one has the moral right to feel quite upset about this, and to
write about it as well, possibly in considerable anger, that indeed
may be caused, as it is in my case, by considerable pain for decades,
that pseudoscientists involved with ME/CFS insist, on what they call
grounds of 'evidence based medicine', does not exist, is imaginary, is
created by their own dysfunctional thinking, and is in fact
hypochondria, hysteria, if not malingering, albeit this diagnosis is
hidden under PC intentionally euphemistic psychiatric labels like
A little later Ms. Marcus writes
Harvey Alter, a 75-year-old hematologist who is
a member of the National Academy of Sciences, says the intensity of
the XMRV debate took him by surprise.
For weeks, Dr. Alter, who works at the NIH, was hounded by reporters
and patients demanding more information—information that Dr. Alter
says he didn't feel was ready for presentation.
"It never dawned on me that one sentence would have such impact," he
says. He couldn't respond to all the email and worried that any
comments might be misinterpreted.
Indeed. As I said, I never mailed to dr. Alter, though
I wrote about him on my site and thanked him for his efforts:
Some good ME-news (?!). But as I said
above: I know that I lack the knowledge to say anything to him that's
scientifically useful, so I won't lay claim on his time.
Further on, Ms. Marcus returns to dr. Le Grice
Dr. Le Grice says he is no stranger to the politics of
science and advocacy: He spent years developing anti-retroviral drugs
at a drug company and then running a university center for AIDS
research. Still, the 58-year-old biochemist is sometimes taken aback
by patients' suspicion of the motives of scientists investigating
Here I say "hmmm": I can understand why Dr. Le Grice
"is sometimes taken aback by patients' suspicion of the motives of
scientists investigating XMRV" - but then I was last year, when I
returned to studying ME/CFS after having turned away from doing that
mostly for two decades, very much taken aback by the out and
out pseudoscientific rot some supposed medical scientists turn out to
have published about and around ME/CFS: See e.g.
where I discuss two very prominent scientists with
similar misgivings about the pseudo-science that is most of
psychiatry, psychotherapy and pscychology.
A bit further on, Ms. Marcus discusses Ms. Kitei's
take, saying among other things
Jonathan Stoye, a British scientist who was moderating
the panel discussion, asked Ms. Kitei to stop her line of questioning.
"I think nobody in this business is trying to get a negative result,"
he told her. "It's in nobody's interest."
Ms. Kitei replied: "Of course it is.... The CDC has said this is a
psychogenic illness for 26 years." She tried to say more, but Dr.
Stoye cut her off. "We're not here to discuss the CDC," he said.
I have seen the video of that, and my own take - see
Falk, Kitei and problems around ME
problems around ME - is that (1)
one can't quarrel in public, on video, about scientific deceptions, if
one wants to make a career in science, while (2) since I am too old to
make a career in science, but have the degrees, am quite prepared to
say and insist that Ms. Kitei is quite right about the CDC, at least
as was, and to the best of my knowledge: It did not do honest rational
science with regards to ME/CFS, if only because then they would not
have made the same elementary fallacy of confusing "chronic fatigue"
and ME for two decades in a row.
Ms. Marcus continues the above thus
The CDC denies any effort to discredit the disease. "I
take issue with people who would make the accusation that CDC went
into this whole process with the intention to come up with negative
results, because that was certainly not the case," said Stephan S.
Monroe, CDC's director of the division of viral and rickettsial
I don't know dr. Monroe, but I do know a man in his
position can hardly publicly utter forth in a different way, but he
should then take issue with Hilary Johnson, who detailed a
lot of the things that the CDC did wrong about and around ME/CFS in "Osler's
Web", which includes the "disappearance" of millions of
dollars earmarked for scientific study of ME/CFS.
Ms. Marcus has more, that I find a little too
journalistic for my tastes, which I suppose is mostly about this
Dr. Le Grice explained that because of Mr. Miller's
patient-advocacy email campaign, Dr. Le Grice has less time to spend
doing science about XMRV.
This is probably true, and not only for dr. Le Grice.
Also, I agree patients with ME/CFS should not mail scientists who
research it, unless they know them personally anyway or have
information they have a rational reason to believe is important for
science, and would not have been thought of by the scientists.
Anyway... as I said, I think this is a good article,
and Ms. Marcus end, that I sloganize as "Don't bother real scientists
if you are a patient: Bother politicians!", seems right to me - and
indeed I believe it is not fair to persecute a man like dr. Alter with
reams and reams of mails but quite fair to persecute politicians in
office or seeking office with the same, for it is a politician's job
to listen to the people, and they have power in deciding what is
researched by which amounts of money.
3. Neuroskeptic on journalists
reporting science and scientists
As it happens, Neuroskeptic, a British neuroscientist
with an interesting blog about neuroscience, has a recent interesting
post about the differences between scientists and journalists. It is
here, dated today, titled as follows
and as often with Neuroskeptic quite sensible and well
worth reading, whether you are a scientist, a journalist or a patient.
Here are two good bits from it:
In summary, journalists and scientists have completely
different agendas. So "good science journalism", in the sense of stuff
that scientists and journalists will be equally happy with, is a
contradiction in terms. Except maybe in the rare cases of sudden
breakthroughs that genuinely involve hot topics, like say
the discovery of a cute new species. This is not the fault of
individual journalists; it's a structural problem.
But the problem
is not limited to science journalism. Newspaper journalism is in
crisis as we all know. Sales and profits are falling so jobs are cut
and the few remaining people have to shoulder the same workload. Cheap
junior reporters and unpaid interns increasingly replace expensive
veterans. Under enormous time pressures, journalists have no choice
rely heavily on press releases. This can't go for ever - something
has to give.
So what's the solution? This is going to make me sound like a right
arse but I think the answer is... blogging. Not as a replacement for
science journalism, but as an complement to it. A science blogger can
act as an intermediary between raw science and journalists.
Quite so - which is one reason for me to write so much
in Nederlog about ME, indeed in the hope it is picked up by rational
and reasonable people, including journalists, as I believe has
Anyway... another good article that deserves reading
P.S. Any needed corrections must be made later.