M.E.
- definitions
Introduction: This is a rewrite of november 2009 of a
file that has been much longer on the site. My reason for the rewrite is that
it has become high time to distinguish two kinds of definitions of M.E.
1. The scientific definitions
2. Recent developments
3. The fraudulent definitions
Incidentally, M.E. or ME is also known as C.F.S. or CFS, and indeed also in
combinations thereof, such as ME/CFS. The reasons for this will be briefly
discussed below, as is my reason for avoiding "CFS" to describe my illness.
1. The scientific definitions
There are many definitions of what I call "M.E."
and also many other names for it. There are two kinds of reasons for
this, and the first kind is scientific:
There is no
widely accepted medical or scientific explanation of M.E.; there is no widely
accepted therapy; there is no known cure; there are many different interests
involved; and the more or less accepted symptoms of M.E. probably cover
several - possibly related - types of disease.
Here the reader should realize two things:
First, this has been so with very many diseases (and lasted many
decades if not more for some diseases) and especially until their medical
cause(s) were discovered, which when really found is normally attested to by
some kind of (partial) cure based on these causal findings. (This is the same
as in real science: Physics and chemistry are real sciences because they
enable the surrection of a really working technology based om these sciences,
that would not exist if these sciences were not mostly factually accurate in
the theories that went into the technologies.)
Second, that there is no known cause for one's illness does not - in logic,
but see below - mean at all that one is not ill, cannot know that one is ill,
or that others cannot know that one is ill, and indeed the World Health
Organization has admitted ME/CFS as a real physical disease - not
psychosomatic, not psychiatric, not delusional, not
fraudulent - since 1969.
Again, this is much like with other admitted diseases before their causes
were found, except that it is these days a bit more bureaucratized and
formalized than in earlier days.
The thing to hold fast is this: Since 1969 very many highly qualified
medical specialists, biochemists, and other real scientists concerned with
ME/CFS have agreed that ME/CFS is a real and serious physiological disease.
And indeed there has been a considerable amount of research into ME/CFS,
that jas resulted in a good attempt at defining and describing
the ailment I suffer from since January 1, 1979. It is under the following
link:
This is a medical report by a group of medical specialists
prepared for the government of Canada that dates from 2003. It is in PDF and is 222 Kb. (So you need Adobe
Acrobat, which you can get for free on many places on the internet.) It also
is written in medicalese, as is unavoidable when one treats the disease on a
scientific level. This may make it difficult to read for persons with no or
little medical knowledge, but it is a good and clear report, and a widely
accepted description of the symptomatology associated with the disease.
There also are other efforts to arrive at a useful set of symptoms to help
identify and distinguish persons suffering from ME/CFS, that are not quite the
same as the one given above, but that are mostly the same.
This is the reason I spoke of "definitions" in the title of the present
section: There are several - and there were even more in earlier days - but
they mostly agree on the symptomatology.
Next, another terminological issue:
I mentioned above the abbreviation "CFS"
as an alternative for "ME" and said I rejected it. Here is why:
The abbreviation "CFS" stands for "Chronic Fatigue
Syndrome", which is a medical and bureaucratic euphemism I reject for my ailment, since it
is grossly misleading:
The "fatigue" I indeed have is not normal and
the name "Chronic Fatigue Syndrome" implicitly denies or pooh-poohs other
serious aspects of M.E. such as muscle aches and other complaints (dizziness,
diarrhea, sweating, troubles with sleeping, seeing, remembering and thinking, and many more: See
ME/CFS for
a good survey).
One reason the term "fatigue" is misleading is that what ails me (and
others with M.E.) is a continuous lack of energy, apparently because
something doesn't work properly in the energy-metabolism. This indeed has the
effect that one feels "tired" nearly always, but even so it is very
easy for me to know whether or not I am tired in the ordinary sense, after
having been awake a considerable time. Thus, I generally wake up feeling
miserable, having no energy, and having muscular pains in my arms and legs,
but when I have been awake long enough in addition I also get the normal
feeling of being tired.
Another reason to reject "CFS" as a name for my disease is that there seem
to be at least two groups of patients with ME/CFS, and my symptoms and the
start of my disease (Epstein-Barr) fit considerably better with the ME-group.
However, my main reason is the former: To reduce what I suffer from
to "fatigue" or "tiredness" is denigrating, misleading, does no justice
whatsoever to my symptoms, invites derision, and even the name "fatigue" is a
misnomer, for it is no ordinary fatigue and does not feel like it.
2. Recent developments
In the beginning of October 2009, a very interesting finding was published
about ME/CFS, in one of the most important scientific journals there are,
Science, namely that a recently discovered retro-virus, that goes by the
name of XMRV, has been found in the blood of patients with (severe) ME/CFS in
66% of the cases investigated, as compared with 4% in case of a presumably
mostly healthy control-group.
This is statistically highly significant (and further findings were even
more significant: 95% in a wider group, investigated after the Science
article), although it is not a proof of cause in any sense, but only a
highly interesting correlation (for the XMRV-virus may be
present in ME/CFS-patients e.g. because their resistance against it has been
lowered by the real cause of the disease).
Even so, it is a considerable step forward and it has also given high
hopes, sometimes not realistic, but quite understandble, to patients with
ME/CFS - some of whom, such as myself, have been ill for three decades or
more, without getting any effective medical help.
This last fact is especially due to - caused by - the efforts of a number
of psychiatrists and psychologists (that is: people without a good grounding
in real science, but with a major interest in getting paid for
such therapies as they themselves provide and sell), especially in the UK and
Holland:
3. The fraudulent definitions
Since the 1980ies a group of psychiatrists based in the UK, notably
professors Wessely and Sharpe, have found a nice and convenient way to enrich
psychiatrists and psychotherapists - that is usually: university-graduates in
psychology who specialized in psychotherapy, just as psychiatrists are
university-graduates in medicine who specialized in psychiatry.
Messrs. Wessely and Sharpe have namely decided that ME/CFS is, either in
their understanding or with a view to their financial interests, best defined
as a psychosomatic psychiatric disorder, and have tried to impose that
definition ever since as THE correct one in all manner of English
bureaucratic, state and health-organizations.
The reason for this is obvious, when looked upon as sound marketing:
Every ME/CFS-patient thus became a potential source of income - by way of
paid psychotherapies to be given to them so as to cure them from "somatizing",
as messrs. Wessely and Sharpe like to call it.
Personally, I am willing to suppose that financial benefit for themselves
and many others from their own professional group formed the main (conscious)
reason for Wessely's and Sharpe's many efforts, though it clearly sounds
pretty mad in view of the World Health Organizations classification of the
disease as neurological or physical, and not as psychiatric or
delusional - for surely the WHO has more medical capacity and relevant
knowledge than two British shrinks.
But then there have been quite a lot of evidently at least slighly mad
psychiatrists, starting with Freud and Jung themselves.
In any case, Wessely and Sharpe were rather succesful in the UK, probably
because they are not serious scientists (*), but very effective
manipulators of health-organizations, and as a result many British patients
with ME have been delivered in their hands or those of their psychiatric and
psycho-therapeutical brethren, to get cured from their delusions,
somatizations, and related forms of madness if not malingering, normally by
having to follow courses in - highly paid: there is that human-all-too-human
motive again - Cognitive Behavourial Therapy a.k.a. CBT.
The small problem with it was only that it did cure very few or none, and
made the life and health-situation of very many exposed to it much worse than
it was without all the physical exercise required to do a psychiatric therapy
at a psychatrists or psychotherapist's office - of course highly paid: and
there is that human-all-too-human motive again - besides causing many a lot of
physical pain.
Now this did not at all stop messrs. Wessely and Sharpe from denigrating
and defaming patients with ME/CFS, and indeed continueing to do so was much in
the interests of every UK psychiatrist and psychotherapist (that is: in so far
as these were willing to trample on the World Health Organizations ruling, and
to play with the ill health of ill people for no better reason than
self-enrichment).
But it did, in the course of time, stop some GPs and other medical people
sending their patients with suspected ME/CFS to the psychiatric and
psychotherapeutic brotherhood, for which reasons - among others - the position
of messrs. Wessely and Sharpe, also in their own UK, is less strong than it
used to be, though they still seem to have a lot of influence, having
manipulated themselves in all manner of medical institutions and committees
concerned with ME/CFS, on the strength of their medical degrees and their
publications about ME/CFS over the last decades, which makes them nominally
"specialists" in the disease and its treatment.
My own opinion about them, and about their Dutch counterparts professors
Van der Meer and Bleyenberg, who dealt for decades in the same drivel in
Holland, presumably from the same financial motives and personal reasons,
being myself a psychologist and philosopher of science who has ME/CFS
(symptomwise) for over thirty years now, without getting any effective help,
mostly thanks to the efforts of messrs. Wessely, Sharpe, Van der Meer and
Bleyenberg over the same decades, is the following.
First, I can understand the financial motives of these gentlemen, and the
reason why they have been much supported by their fellow psychiatrists and
psychotherapists: They were as honest and sincere as were Freud and Jung, who
also were in it for the money, if not outright insane themselves.
Second, I find it more difficult to understand why they could get away with
it for so long, in view of the World Health Organization's ruling on the
disease, and in view of much real research over the last decades, by
real scientists, that there are many things physically wrong with patients
with - the symptoms of - ME/CFS, none of which can be plausibly explained by
any psychiatric theory, however unscientific, and none of which is amenable to
psychiatric or psychotherapeutic treatment.
The probably strongest reason here why theyu could get away with it for so
long were given long ago, and in other contexts, by Rochefoucauld and Burke:
"We have all sufficient strength to support
the misfortunes of others."
(Rochefoucauld)
"The only thing necessary for the triumph of evil is for good men
to do nothing."
(Burke)
Please note that in both cases - "to support the misfortunes
of others" and "to do nothing" - it helps a lot if these same
ommissions (by coincidence or by design) happen to financially help
oneself or members of one's own professional group a lot.
Third, having been almost continuously in pain over the last 20
years, while having the best possible degrees in psychology and
philosophy, has set me thinking about the motives of these gentlemen,
of whom at least three must at some point in their lives have sworn
the Hippocratical oath, that includes as its first article
"First do no harm".
Why have they harmed, offended, denigrated, and trampled upon the
chances for a happy or at least a bearable life of so many patients
with ME/CFS, and why have they done so for decades, all in the face of
the evidence compiled by medically and biochemically far better
qualified researchers that their personal psychiatric redefinition of
the physical disease ME/CFS was utterly false and harmful, besides
being offensive?
Presumably professors Wessely and Sharpe - both psychiatrists, both
to my knowledge without any real scientific qualification in the
relevant (biochemical or physiological) fields of scientific research
into ME/CFS - have read more psychiatric literature than I have, but
such psychiatric literature as I have read, and such knowledge as I do
have of human beings and human psychology, at my age of nearly 60,
spend for more than half the time in misery and poverty due to a
disease which is according to messrs. Wessely, Sharpe, Van der Meer
and Bleyenberg a delusion or a fraud, have led me to this conclusion:
Very probably, these gentlemen are - probably unconscious, but I am
known to be an optimist about human motives - sadists: They like it
that others suffer, especially if these others are in their power;
they enjoy denigrating, belittling and offending people, quite
possibly as much as a Limbaugh or Beck love doing so, but in a more
quite quasi-scientific way; their main reasons to become a healer of
some kind were probably the status and the power attached to their
functions, next to the excellent incomes; and by and large they are
just personal rotters or else sickos, with a clear personal
psychiatric problem (sado-masochism), for which I invite them for paid
treatment at my home, since I believe Cognitive Behavourial Therapy is
just the therapy of choice for that, and I am a qualified
psychologist, also very well capable of handing out severe
tonguelashings, especially of nominal doctors of medicine who abuse
their degrees to indulge in private sadism for private pay.
In brief: By my lights, these gentlemen are medical frauds; their
definitions of and writings about ME/CFS are fraudulent and false; and
their probable personal and financial motives are despicable if not
outright sick.
For more on this, see
More
about ME, which discusses articles by prof. Hooper, that I was not
fortunate enough to find earlier.
Finally, for those who disagree: Try to live
with ME for 30 years yourself, all the time being discriminated as if
one is a fraud or a loony or meet me in court - and yes, I am
perfectly well willing to grant that the sadism I impute to the
slandering professional gentlemen, like the delusions they attribute
to me, are in fact unconscious, and that in reality they did not
really know what they were unconsciously indulging in for decades.
And no: Personally, I do not believe
this - I believe it was all quite conscious, quite deliberate, and
done gleefully and with great amounts of very pleasant
Schadenfreude - but then I know enoough of psychiatry, psychology
and the law to admit the possibility of a sadist in the guise of a
professional psychiatrist, who himself does not know he is a sadist,
and who regards his - to others - obvious sadism (denigration,
disqualification, misrepresentation, causation of real physical harm)
as if it were human benevolence of the highest order and integrity.
It is possible, though, that I am as mistaken
about messrs. Wessely, Sharpe, Van der Meer and Bleyenberg's
motives just as good catholics will insist I am mistaken about
Torquemada's motives and intentions: After all, they may mean well
even if they do harm, and should have known so for decades, especially
since there own professional medical brethren, with much better
scientific knowledge and understanding of ME/CFS, have at least by
implication been telling them for decades now.
(*) Psychiatrists and psychologists - with a few
rare exceptions - just are not real scientists, and usually
don't know much of real science - to be understood as:
mathematics, physics, biochemistry - and indeed do not get much of it
during their university years.
And if the causes of ME/CFS are physiological, as the WHO assumes,
and as most bona fide researches in ME/CFS assume, psychiatrists and
psychologists are just not qualified to do much or any decent research
in the field, just as they are not qualified to do much or any decent
research in biochemistry or physics.
