Chronic Fatique Syndrom - MED: CDC study

Author

MED: CDC study

Ginny Remeika

2006-04-23, 6:01 pm

Hi Marnia:

I guess I don't understand what's so horrible about the title or the
final sentences (sorry for my small and foggy brain):

> *Clinical methodology and its implications for the study of
> therapeutic interventions for chronic fatigue syndrome: a
> commentary.*
>
> **Journal:* Pharmacogenomics. 2006 Apr;7(3):521-8.*
>
> **Author:* Demitrack MA.*
>
> **Affiliation:* Neuronetics, Inc., One Great Valley Parkway, Suite 2,
> Malvern, Pennsylvania 19355, USA. mdemitrack@neuronetics.com.*
>
> **NLM Citation:* PMID: 16610962*
>
> *Chronic fatigue syndrome (CFS) is a complex, multisymptom illness of
> unknown etiology. A variety of operational case definitions based on
> symptom report have been developed that share some common clinical
> features. Patients often come to clinical presentation after months
> or, more typically, years of symptomatic distress. Comorbid
> presentation with psychiatric illnesses has been noted.*
>
>
> Not in me, they haven't. How about you? best to all us miners'
> canaries, Marnia

Maybe you mean the last sentence. I do happen to also have had (for
many years) severe depression, in addition to (for 12 years), diagnosed
CFS. I don't think by saying it "has been noted" they mean in
everyone. I do know that far too many docs have been known to say
things like "your fatigue is ONLY depression" and other ridiculous
things like that, including to me and including well after my depression
was well under control but I was still bed-ridden with fatigue.

But I don't understand why these are not interesting study results,
despite that and my dislike of the CDC.

Cheers, hope it's spring in your part of the world,
Ginny Remeika
Maine usa

Marnia He Sapa

2006-04-24, 1:02 am

Ginny, no apologies to me, and I am so sorry you have clinical
depression to deal with in addition to ME/CFS. Gettting a diagnosis
must have been extremely difficult. From all I have read and understood
from the patient community in the last ten years or so, clinical
depression is actually rare conjunct with ME/CFS. Grief is common at
some stage, right through to acceptance, but grief is natural, not
clinical, depression. Grief is not a "psychiatric illness."

My point is that, when one is reading about treatment implications
following a genomic study (that was the emphasis of all this
co-ordinated methodology) for, say, ALS, or heart disease, or diabetes,
it is highly unsusual to read that a) people came to clinical
presentation "typically" after years of distress [most of us "typically"
sought medical help within weeks or months of sudden onset (slow onset
may be different)], and that b) comorbid presentation of psychiatric
illnesses has been noted. Even though, I am quite sure, there are some
ALS, heart disease, and diabetes patients who have to be dragged to the
doctor despite prolonged distress, and in all populations there can be
found some patients who will also have psychiatric illness of one sort
or another. The author may as well have stated "comorbid presentation
of tooth caries has been noted." That, I would bet, is in higher
incidence, and has as much to do with ME/CFS: nothing particularly. But
the press, reading this abstract and already disposed through two
decades of CDC trivializing of the illness, will pick up on that
statement, as will doctors who have for years Not Believed In the
validity of a non-psychiatric physiological basis for the illness. And
more to the point *the author is employed by
* *Neuronetics Inc*. Non-invasive neuromodulation for depression. One
Great Valley Parkway *...
* Neuronetics is developing a non-invasive medical technology to treat
depression using Transcranial Magnetic Stimulation (TMS). per google.
No conflict of interest so long as it is understood ME/CFS is not
clinical depression, and that most of us don't suffer clinical
depression or other psychiatric illnesses, but that isn't really what
the author "noted" is it?

The purpose, according to the CDC website on CFS, of this study was to
find a biomarker, and to trace the development of the disease. Neither,
according to Reeves, done. Why? Because these gene abnormalities are
not cut and dried. Numerous gene abnormalities, for example, have been
found in people with autism, but they have no predictive value: they
vary from person to person, the combination varies from person to
person, and their presence does not predict the what symptoms or the
degree of impairment the individual will bear. The CDC is crowing as
though they actually accomplished something: they didn't even use the
latest, best diagnostic criteria in selecting their patient sample.

I've read Reeves comments in the transcript of the press conference.
Clearly, what he is excited about is being involved in the cool and sexy
methodology. Did CDC find something useful? I don't know. But they
certainly arent the first to find credible evidence that ME/CFS is a
physiological illness. And the wording used is quite particular: we
are told because of five gene abnormalities, our bodies "cannot cope
with the need to adjust" to infection, injury, or environmental trauma.
A very great many people, prepped by 20+ years of the CDC saying this
illness is nothing, doesn't exist, is hysterics, are going to read
phrases such as "cannot cope" and "comorbid presentation of psychiatric
illness" and Reeves remarks that the gene information will allow
treatment with cognitive and behavior therapies -- and for many people
this is going to mean the illness is a physiologically based psychiatric
illness: even their genes can't cope with stress, with the simple need
to adjust to infection or a broken leg.

And it is bullshit. We have all long suspected that we had some sort
of genetic component which made us vulnerable to specific concerted
environmental insults. That does not mean our bodies cannot cope. It
means the nexus of our immune, endocrine, central, peripheral nervous
systems, and neurological system is particularly sensitive. It means we
are like Arabian horses rather than Clydesdales: we can cope fine, but
not with the same load. It means we are miners' canaries. Those
environmental insults which will eventually harm everyone harm us
first. We have already known this. That they can put a name on five
genes is very nice for their reputations, and maybe eventually something
usable will grow out of it for us, but it is not the great break-through
they claim. And that some few people with ME/CFS also suffer from a
psychiatric illness, or tooth caries, or a liking for watching American
Idol, has no implications whatever for developing treatment specifically
for ME/CFS.

(ah, that linguistics training in discourse analysis comes in handy once
again --if you don't know it, you might find a book by Deborah Tannen
useful: The Gentle Art of Verbal Self-Defense, written for
non-linguists, fun and an eye-opener.)

And yes, today has been lovely: my daffodills and grape hyacinth are in
bloom, the oregano and tarragon are up and I've been grazing on them, so
good to have truly fresh green food again. I am disgusted only with the
CDC's posturing, not with life, and certainly not with the beautiful
spring weather -- even the blizzards! may your dear brain de-fuzz soon,
very best to you, Marnia

Ginny Remeika wrote:

> Hi Marnia:
>
> I guess I don't understand what's so horrible about the title or the
> final sentences (sorry for my small and foggy brain):
>
>
>
>
> Maybe you mean the last sentence. I do happen to also have had (for
> many years) severe depression, in addition to (for 12 years),
> diagnosed CFS. I don't think by saying it "has been noted" they mean
> in everyone. I do know that far too many docs have been known to say
> things like "your fatigue is ONLY depression" and other ridiculous
> things like that, including to me and including well after my
> depression was well under control but I was still bed-ridden with
> fatigue.
>
> But I don't understand why these are not interesting study results,
> despite that and my dislike of the CDC.
>
> Cheers, hope it's spring in your part of the world,
> Ginny Remeika
> Maine usa
>
>