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Jul 4 , 2011           

me+ME: Dr. Komaroff+EEGs; Dr. Peterson's organization; "ME" vs "CFS"

This is mostly documentary, though the first two items are scientifically quite interesting, as they are related to real scientific research into the causes and symptoms of ME/CFS.

1. Dr. Komaroff and EEGs
        2. Dr. Peterson starts a new organization
          3. The name-problem: "ME", "CFS", "ME/CFS", "CFS/ME", "CF"?

1. Dr. Komaroff and EEGs

Dr. Komaroff, who is at Harvard and did a lot to establish ME/CFS is a real disease, and a team developed a quite interesting technique using the data from EEGs, that I'd guess is mostly mathematical, that shows a reliable difference between people with ME/CFS - "carefully defined CFS" - and others.

Here is the abstract as I found it at Phoenix Rising, where there is also a link to a pdf-file of the pre-publication text:

This is the abstract:

Frank H Duffy, Gloria B McAnulty, Michelle C McCreary, George J Cuchural and Anthony L Komaroff

BMC Neurology 2011, 11:82doi:10.1186/1471-2377-11-82

Published: 1 July 2011
Abstract (provisional)

Previous studies suggest central nervous system involvement in chronic fatigue syndrome (CFS), yet there are no established diagnostic criteria. CFS may be difficult to differentiate from clinical depression. The study's objective was to determine if spectral coherence, a computational derivative of spectral analysis of the electroencephalogram (EEG), could distinguish patients with CFS from healthy control subjects and not erroneously classify depressed patients as having CFS.

This is a study, conducted in an academic medical center electroencephalography laboratory, of 632 subjects: 390 healthy normal controls, 70 patients with carefully defined CFS, 24 with major depression, and 148 with general fatigue. Aside from fatigue, all patients were medically healthy by history and examination. EEGs were obtained and spectral coherences calculated after extensive artifact removal. Principal Components Analysis identified coherence factors and corresponding factor loading patterns. Discriminant analysis determined whether spectral coherence factors could reliably discriminate CFS patients from healthy control subjects without misclassifying depression as CFS.

Analysis of EEG coherence data from a large sample (n=632) of patients and healthy controls identified 40 factors explaining 55.6% total variance. Factors showed highly significant group differentiation (p<.0004) identifying 89.5% of unmedicated female CFS patients and 92.4% of healthy female controls. Recursive jackknifing showed predictions were stable. A conservative 10-factor discriminant function model was subsequently applied, and also showed highly significant group discrimination (p<.001), accurately classifying 88.9% unmedicated males with CFS, and 82.4% unmedicated male healthy controls. No patient with depression was classified as having CFS. The model was less accurate (73.9%) in identifying CFS patients taking psychoactive medications. Factors involving the temporal lobes were of primary importance.

EEG spectral coherence analysis identified unmedicated patients with CFS and healthy control subjects without misclassifying depressed patients as CFS, providing evidence that CFS patients demonstrate brain physiology that is not observed in healthy normals or patients with major depression. Studies of new CFS patients and comparison groups are required to determine the possible clinical utility of this test. The results concur with other studies finding neurological abnormalities in CFS, and implicate temporal lobe involvement in CFS pathophysiology.

This is quite interesting, because it is a rather large study, with a precise and sharp finding.

I have downloaded but so far not read the full text, and I don't know what is "spectral coherence analysis", although I can make a fair guess, and would assume it is a species of what I know of as ANOVA, that is "analysis of variance", which is a statistical technique to find which of a set of measured factors are correlated to what extent.

2. Dr. Peterson starts a new organization

Dr. Peterson did a lot for persons with ME/CFS, which he got confronted with in Nevada, decades ago, and his name is part of the WPI = Whittemore Peterson Institute.

However, he fell out with it quite soon, for undisclosed reasons, and it seems he does not believe Dr. Mikovits is right that XMRV may play a causal or indeed any role in ME/CFS.

Now he started an organization of his own, and my source is again Phoenix Rising:

In the thread under the first link you find two things mentioned I'll briefly comment on. First, there is a mentioning of Dr. Marshall and Bond University, which turns out to be related to an item on Phoenix Rising in 2009 that sounds interesting:

This is quite interesting, (a) because if this can be done - that is: the test is valid (does what it should do: reliably distinguish people with ME/CFS from others, by means of a test that is affordable) - it would solve many problems for most persons who are ill with ME/CFS, and (b) because it is bio-chemistry, which is a real science, unlike psychiatry, that is mostly a pseudoscience, rapidly growing more pseudo as well. (See also: Russell Tribunal on Psychiatry)

My second point concerns the difference between dr. Peterson and dr. Mikovits, that I know little about and briefly commented on here, some three months ago:

As before, there are personal remarks about dr. Peterson on Phoenix Rising, that I see no reason for, and namely because those making them know as little as I do about what is really involved.

As for me: I have neither met nor corresponded with either; I am rather skeptical about personal judgments concerning persons one has not personally met (and even then); and while there seem to be considerable differences of opinion between dr. Peterson and dr. Mikovits, I see no reason to distrust either, even if also at most one of them can be right about XMRV; and personally I welcome all efforts of real scientists  to unriddle ME/CFS, and both dr. Peterson and dr. Mikovits are real scientists.

3. The name-problem: "ME", "CFS", "ME/CFS", "CFS/ME", "CF"?

Once in a while, patients get upset about the naming of the disease(s) I refer to as "ME/CFS", that I myself, being Dutch, and having a disease that fits the CCC-definition of ME since over three decades, learned of as "ME" ("Myalgic Encephalomyelitis").

Personally, I prefer the name "ME", because that seems medically and historically the best name, going back to the nineteenfifties, though I agree in principle that - since the real cause of ME/CFS is not known as yet - the name "Myalgic Encephalomyelitis" may suggest what is not so (though part of my symptoms definitely are neurological).

The name "CFS" was introduced by pseudoscientific psychiatrists and such, notably Reeves in the US and Wessely in GB, whose main aim was not scientific but to propagandize the notion that persons with ME/CFS are not really ill, but suffer from "dysfunctional belief systems" - as excellent a case of projection as this psychologist ever met - and should not be entitled to support for the ill, and should be treated by psychiatrists by psychiatric methods (CBT: the latest in psychiatric brainwashing techniques).

I can very well understand the irritation of many patients with the name "CFS", and even more with "CF" ("Chronic Fatigue"), because both suggest strongly what is definitely false in my experience and to my scientific way of thinking.

Then again, in the US, no doubt thanks to the millions spent by Reeves and the CDC, in part on plugging this name, and in part on not researching ME (see: Hillary Johnson's Osler's Web: Inside The Labyrinth of the Chronic Fatigue Syndrome Epidemic - now soon available on Kindle), the misleading name "CFS" is widely used, also in good research (as Komaroff's, listed above and below).

So I decided that, while I personally strongly prefer "ME" over "CFS", and while I agree that certainly "CFS" is a misnomer, and indeed an intentional misnomer, under the circumstances "ME/CFS" is the best name for the disease, in the end because that combination offers the best chance for useful hits in internet searches. (Unfortunately "CFS/ME" seems to be again an effort of pseudo-scientific psychiatrists to upset any rational dialogue or naming, so I'd like to avoid that.)

In fact, don't think it is worthwile - for patients - to spend a lot of time doing battle about "the appropriate name" for the disease, since the real facts do not depend on verbal labels used for them, and what matters most is finding a causal explanation and/or effective treatment for the disease, and "ME/CFS" is, as things are, both a compromise and a way to correct the psychiatric propagandistic renaming efforts, and besides most likely to get relevant hits when searching the internet.

P.S. Corrections, if any are necessary, have to be made later.

As to ME/CFS (that I prefer to call ME):

1.  Anthony Komaroff Ten discoveries about the biology of CFS (pdf)
3.  Hillary Johnson The Why
4.  Consensus of 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)
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
 Maarten Maartensz Myalgic Encephalomyelitis

Short descriptions of the above:                

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:

7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam with ME.
10. The directory on my site about ME.

See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.

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