Question:
I picked up an interesting letter to the editor of the BMJ recently, by Dr.
Do Ho-Yen, a well known CFIDS research/clinician type. He suggests, with
some vigor, that CFIDS and fibormyalgia are two real, distinct illnesses
(at least most of the time) and that physical exercise will benefit
fibromyalgia victims but must not be attemptyed by PWCs until they are
"80%" recovered.
Interesting. Dispite the fairly widely held belief that these two illnesses
may be identical, I tend to agree that they are different, most of the time
(based on talking to victims of both and various studies and my right as a
US citizen).
Perhaps this explains the differing experience with exercise among "pwcs".
There is no way that anybody is going to convince me that exercise is good
for a PWC at less than 80% function, or something like that.
Yet we read about people who claim to benefit from exercise. Doctors claim
to help patients with exercise. I think that these people either have
fibromyalgia, or soemthing else altogether. I think the response to
exercise is highly diagnostic--if no severe worsening of symptoms for days
after mild exercise, either the patient does not have CFIDS or is largely
recovered from CFIDS.
Not to say that fibromyalgia is other than terrible or anything less than
CFIDS, but I think it is different in most cases. Of course, it is probably
possible to have both at once. Ho-Yen references his book "Better recovery
from viral illness" (he is a microbiologist). Has anybody seen this? Any
information out there?
Answer:
This thread is very interesting to me because I'm someone who doesn't
have severe worsening of symptoms after mild exercise, which would
indicate that I don't have CFS by this diagnostic.
I recently talked with a PWC in my local support group who claimed that she
had recently talked to a CFS specialist (I can't remember his name, but
can find out...) who said that the brain fog part of CFIDS and the
extreme fatigue part of CFIDS are caused by two different mechanisms. I
thought this was interesting, because (as some of you know) for the past
several years I've had a lot of problems with brain fog but relatively
few problems with fatigue -- I do tire much more easily than I used to,
and I think a lot of my tiredness feels unnatural, but I haven't experienced
anything like what many PWC's seem to experience. I've never received
an official diagnosis of anything, despite seeing many doctors.
I haven't noticed any FM type symptoms either, just neurological weirdness.
As far as exercise goes, I am able to exercise, but I usually don't feel
too great while I do it, and usually I feel really spacy and drained afterwards,
but that feeling goes away after about an hour or two. The only really
obvious benefit I've noticed is that it seems to help me sleep.
I've encountered a number of people (in person and on the internet) who
have either 'mild' CFS cases, or only some of the common CFS symptoms
(ie severe fatigue but no brainfog, brainfog but no fatigue, both of
these with and without FM, etc.) My latest theory is that all of
these things are caused by damage to the brain/limbic system, which
is probably caused by a virus or viruses. The difference being the
part of the brain is affected and the degree to which the part(s) are
damaged. Maybe these are caused by different viruses, maybe not.
I know this is a rather vague explanation.....any comments?
