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.
Note of September 10, 2016:
All of the above is from 2009 or before. It does need some revisals,
but (apart from resizing, coloring and diminishing the size of the
letters, I did do nothing so far).
(*)
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 during their university years.
And the causes of ME/CFS are physiological, as the WHO assumes, and as
most bona fine 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.
