Nederlog

 

 March 13, 2011

 

me+ME: Two good articles on ME - NYT and WSJ



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 XMRV-saga
3. Neuroskeptic on journalists reporting science and scientists

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

The 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 the results 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 perpetrators.

But I will leave that out, and instead quote Mr. Tuller

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 links):

“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 underlying depression?

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 mean".

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 patients' evidence.

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 minimally.

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 well informed.

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 following one:

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 studying it.

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 find XMRV.

"If the CDC had found the retrovirus," she wrote, "it would have negated its 20-year affair with chronic fatigue syndrome as a psychological problem."

Here I believe both Ms. Marcus and Ms. Kitei are right:

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 with ME/CFS.

Ms. Marcus continues the above quoted paragraphs with this one:

"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 "somatoform".

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 XMRV.

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 e.g. my Falk, Kitei and problems around ME and 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 diseases.

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 but to 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 happened repeatedly.

Anyway... another good article that deserves reading in full: Science/Journalism.


P.S. Any needed corrections must 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".

Also, FWIW: I am glad there are journalists like David Tuller, Amy Docker Marcus and Mindy Kitei who do spend a lot of time and effort to write what seem to me to be usually quite good, informative and sensible articles relating to ME/CFS.

And as I have also been stressing repeatedly here, notably in On a new Kitei Editorial + 百花齊放,百家爭鳴 I personally almost never care if others see things in other ways or from other perspectives than I do - that is, as long as I believe the others are honest, and tried their best, and I can see we share some important ends.

As I ended that last linked article:

百花齊放,百家爭鳴  (*)

Finally, meanwhile and also then: The best chance for persons with ME is real science - the explanation and cure must in the end come from the work and courage and dedication of real scientists.

(*) Actually, I don't know Chinese, and am relying on the Wikipedia article "Hundred Flowers Campaign". It looks nice, and for once I like the Maoist sentiment (that probably was a trick, or soon evolved into one, as explained under the link).

In any case, it is what I favour, and indeed, in so far as I am doing things around ME with others, it is only with the most intelligent ones, and not with others, since I happen to be inclined that way, but most are not - unfortunately, for the probability is that then the problems around ME would have been cleared up decades ago.


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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