Judith writes:
It is true that I haven't been active online for a long time. I simply have
been too sick and scarily undermined financially. HOWEVER, I've been
reading lots, was active for years and years re the name of our illness, and have
respect for some who support "ME/CFS."
I myself have used it with physicians and others. My reason has been that
because "CFS" has come to be increasingly recognized as an illness and not
just some excuse to cover up that I'm totally or majorly psychosomatic, or lazy,
or all the other demeaning things "CFS" has afflicted me with (!). I
thought then that just using "ME" would give me an illness in the eyes of others as
something they knew nothing about, or as an effort on my part to medicalize
whatever was wrong with me, and on and on. And I was worn out having to
provide explanations that probably wouldn't be accepted anyway since "ME" was not
something in common or medico-scientific parlance.
HOWEVER, "CFS," the name applied to so many patients and used by some
respected people who have published in first-rate journals, describes one thing and
one thing only: the fear, mixed with ignorance and laziness, by some
physicians in the late '80s to use the name that most closely describes a disease or
cluster of diseases BECAUSE those doctors wrongly believed that in order to
be connected to an illness that the rest of the medical world would respect
that illness had to have some very specific marker.
This fear was seen in other fields that wanted to be considered respectable
scientifically. One I'm very familiar with because it was what I studied was
sociology. American sociology went off on a very different tangent from
some of the richest sociological European sociological works and tried to
describe human behavior in groups by using numbers and numerical scales. I
remember sitting in class and saying to myself, "this is crazy"--it adds nothing to
the understanding much less the predicting or changing of human behavior.
And because of that I started to take the maximum number of courses I could
take in the philosophy of science, where some very good thinkers "helped" me
understand my reactions.
It has been now stated and recognized that those who first realized that
there was a disease involving at least the brain and the muscles and maybe the
immune system have now increasingly been vindicated in their observations.
And while had this research been done closer to the naming of the illness
"Myalgic Encephalomyelitis" it might have been named something somewhat different,
once named and subsequently so validated by increasingly solid scientific
research and clinical observations that name should be reinstated until such
time as there is an accumulation of solid scientific grounds to rename the
disease (which rename will hardly be "CFS" or "CFIDS."
So I have decided that I will give up the comfort of getting the recognition
that "CFS" is beginning to confer (especially since very few doctors know
what it depicts anyway, and use "myalgic encephalomyelitis" knowing I do have
to have the decency to explain that in a lot of the literature and in popular
parlance this illness has been and will be for a while (unpredictable how
long) called "CFS." And if the person wants to know more I'll tell them, which
of course I wish I didn't have to spend energy on.
But I refuse to be complicit with equating "CFS" with "ME." Especially
since one is an illness and the other is an interesting but awful reflection of a
gross misunderstanding of medical nosology not to mention the
characterization of the symptom clusters that actually exist.
I don't think we should worry about the folks who go bananas about "itis"
because on conventional measures of inflammation those with ME haven't
apparently been shown to have inflammation in the "encephalomyo." There has been
observed amongst so many patients evidence of this being an illness where
inflammation of some sort is very much a part, let it be, again, until there is
some breakthrough in research that might be cause enough to rename "ME-itis."
Funny thing in a manner of speaking, I am finding that increasingly clinical
people speak more comfortably of "fibromyalgia" when describing or
explaining some feature of my many symptoms. And it's not just the pain. It's other
symptoms as well.
When we get some truly wise epidemiological studies we may begin to see
certain subgroups emerging that will speak to a number of these issues. In fact
it is tragic this hasn't yet been done. If each of us could imagine if we
don't have a doctor to whom we can tell all the weird symptoms we have that
wander through our bodies and don't easily follow patterns but patterns do
sometimes emerge, each of those stories, those so-called and demeaned anecdotes,
when compiled, with good demographic categories, and even some diaries, there
would be I think the clarification of many issues including if FM can be a
separate disease or always a set of symptoms in a subset of people with ME, of
portraits that may start sounding like the inflammation that's recognized as
inflammation in other diseases, and so much more.
I'd love to continue in this discussion but things are sufficiently bad with
me now that I must, if typing, use those muscles and brain cells for helping
find money or volunteers and also spending more time pacing, which is right
now almost mandatory.
I think I've said this before. I received Social Security Disability before
the late 1980's, in 1986, and my doctor, my lawyer, and I used the British
ME literature which to everyone's surprise got me Social Security Disability
in the U.S. It was an accident that I found out about the disease called ME.
But I was in a temporary remission and could get to a medical library and
some librarian, when I mentioned "benign myalgic encephalomyelitis" which I had
heard used from Alexis Shelokov, M.D. found me an article on that topic,
which article led me to a British organization who put me in touch with people
like Betty Dowsett, M.D. and others. And that was a very vital set of
connections. Too bad that SSDI is so pitifully inadequate for people who haven't
worked at a good job long enough to allow for a monthly SSDI payment that now
leaves me in penury and cannot be lived on.
Please, I do beg you, to consider droping the equating of ME with CFS as
"ME/CFS" which means very specifically "ME or CFS." They are not either or.
Thanks.
Judith Wisdom
USA
Erik responds:
"CFS" has a meaning that everyone should understand:
It is the term that was applied to an illness that the ME literate
doctors present at the time, Gordon, Shelokov and Hyde believed to be
ME.
This re-naming was performed by the CDC for the specific reason of
disallowing credibility for ME.
Whether one chooses NOT to be complicit in connecting ME and CFS is
not really meaningful and changes nothing, as the characteristics of
the illness AND the actions of the ME literate doctors have already
done so in a manner that cannot be "undone".
Just imagine what would have to be accomplished in order to
completely "disconnect" CFS from ME.
All the copies of Osler's Web would have to be burned, countless
medical records destroyed, many tons of evidence which document the
immune abnormalities must be buried forever, references on the
internet erased, and all the survivors and witnesses would either
have to die off or forget what happened.
Wouldn't it be simpler to just stick to the truth?
"Chronic Fatigue SYNDROME" is the rotten name given to an illness
which is commensurate with ME, but so many people went into mind-melt
moronic-fixation brainlock over the "fatigue" word that they wound up
spending decades fighting with horribly ill people and lumped them
into "fatigue that is caused by anything and everything", so when we
say "CFS", we are forced to specify exactly what kind of "CFS" we are
referring to - the Canadian Consensus Guidelines kind.
There.
Isn't that easier and more truthful than the alternative?
-Erik
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