Something else now than the Editorials of Mindy Kitei
or how to go about advocating as a patient with ME - though as it
happens, it touches on Ms Kitei's first Editorial, that was entitled
"No
More Psychological Studies - An Editorial" - and the
last link is to my own first reaction to it, where you also find links
to the original.
As it happens, it is by a professor of psychology; it
is informed about ME; and it is quite clear, sensible and to the
point, and indeed very close to my ow position on ME - and I am a
psychologist by degree (M.A.) and am in the 33rd year of having this
disease, that with my ex and I started as EBV (Epstein Barr Virus), in
our first year of studying psychology, and then never got away - as
if stuck somewhere between quite ill with an infection and properly
recovering from it.
Also, my interjected notes are both personal and
scientific - and the full article without my notes (which you may
prefer, e.g. to show to doctors) is under the link that follows, in
the title - and
I quote in blue, and my remarks are indented and in black:
Thursday, January 06, 2011
University of Hull Professor of Psychology Rhona Johnston
argues against the widespread belief that ME/chronic fatigue is a
psychological condition…
Which in fact is - in my opinion, but I acknowledge a serious
personal interest: I am ill, and I don't like to be defamed,
insulted, and discriminated by pseudo-science masqueraded as if it
were science - both logically, scientifically and morally required
by professors of psychology and medicine, wherever they see
pseudoscience practised to the detriment of ill people.
But it is rare enough to happen, alas, for which reason
professor Johnston is to be highly commended and seriously
thanked.
ME/chronic fatigue syndrome (ME/CFS) is a
chronic state of profound exhaustion, often accompanied by pain,
sleep problems and cognitive dysfunction, and it is made worse by
exercise.
Quite so, and on a personal note - that holds for many with ME,
but I know the cases of myself and my ex-wife by far the best, and
besides these are somewhat stronger, logically and
probabilistically, than those of others:
This is precisely what ailed my ex and me from the beginning -
January 1979 - and indeed we got from the beginning too much "exercise",
since we were first year students of psychology, having both
started in September 1978, and we had to do examinations, attend
lectures and so called work groups, and related physical moving
about of our bodies, which was the problematic thing to do, and
quite exhausting.
What is strong evidence in our cases that it was not
hypochondria is that we both had resp. given up a good job and
remigrated to follow an academic study and had no personal or
financial interest
whatsoever to pretend we were ill, as also, for us, the problem was not the
studying, but the physical moving about - standing, walking,
travelling, being present then and there and attending bodily -
that was difficult or indeed impossible.
Also, we were quite happy with each other, and were also, at
least in the beginning of our studies, when we had not yet learned
psychology is only a real science for a small part, quite interested
in studying, and we were also, up to January 1979, when the EBV struck,
quite
healthy and fit.
This is also why during the first two years of our illness we saw
quite a few different doctors, often of internal medicine, and
were investigated medically rather thorougly repeatedly, with, as we found ten years later,
when we at long last learned of the disease ME, in fact by way of a BBC WS
program, the for patients with ME normal result that: "we cannot
find anything".
But we ourselves remained feeling miserable and ill all the
time, indeed in varying extent, mostly varying with how much we
were forced to do physically, which caused us many problems and
much unpleasantness, that in fact nearly all were related to
(1) having far less energy than healthy people, to a really
disabling extent, and (2) having pains of various kinds, and (3)
various problems such as years of diarrhea and of night
sweats.
Then a fairly brief but important remark relevant to the phrase "cognitive
dysfunction":
Both my ex and I eventually got an M.A. in psychology (and I
also a B.A. in philosophy), in spite of many difficulties, in my
own case not only physical and ME-related, but connected to
university-politics, and indeed both of us got very good M.A.
degrees.
The reason we succeeded in getting our degrees is that we had
then not severe ME and are both uncommonly intelligent, whereas
the study of psychology already then was
made fit by the
university for IQs of 115, and
thus was not precisely
demanding or indeed a good academic education.
And such "cognitive" difficulties we had we attributed to
exhaustion, although this may have been partially mistaken, in
that there is more wrong, with concentration, memory for words,
spelling and other things, that in my view, if they indeed are a
form of "cognitive dysfunction", have
a physical explanation, such as hypoperfusion of the brain, or
small local damages in connections between neurons.
In any case, here are two concluding remarks relating to the
phrase "cognitive
dysfunction":
Personally speaking: If my ex or I ever had any "cognitive
dysfunction", it did not prevent either of us getting an
excellent M.A. degree in the science of psychology, which shows
that whatever "cognitive
dysfunction" meant in our case and means in the case of
others with our type of disease, it did not keep us from doing
better than all or almost all in our years in university - for
which reason the term "cognitive
dysfunction" is inappropriate when applied to my ex and me.
Generally speaking: I am aware many people with ME do have
serious problems with cognitive tasks, and indeed so do I, when
tested, and so have I when trying to do intricate mathematics. But
I reject the term "cognitive
dysfunction" for patients with ME that I know of, because,
in combination with the pseudoscientists's Jones, Wessely and
Bleijenberg's fraudulent, offensive, false, demeaning, degrading,
discriminating, defaming, denerate sadistical pseudoscientific rot
that we are supposed to be "dysfunctional believers", I rejet this
whole terminology as playing into the hands of psychiatric and
psycho-therapeutical sadists, frauds or incompetents.
In my local health authority area,
individuals with a long-term fatigue problem used to be sent to the
immunology department at the regional hospital for diagnosis and
treatment, but now they are referred to a psychiatrist. This is a
growing trend throughout the UK.
Indeed - and elsewhere, such as in Holland, where it may not so
much be a psychiatrist as a clinical psychologist, and are there
served the fare of CBT and GET.
The intelligent reader should already here see a fundamental
logical - semantical - problem:
If you have a physical problem - exhaustion, diarrhea,
night sweats, inability to stand or walk for long without
collapsing, all while also doing the usual fare for the academic
study course in psychology in the usual tempo (because we had
study loans, that required a certain tempo) - it must be
medical malpractice to diagnose one
as if one has a psychological problem.
These days, getting a diagnosis of chronic
fatigue is tantamount to getting a psychiatric diagnosis. This is
good for creating work for psychiatrists, but is it good for the
individuals concerned?
There is excellent evidence - consult
the index of NL 2010, or indeed
"101 Good Reasons" or indeed the list of ME-related titles
at the end of this text - that being dealt with as if one were a
psychiatric patient earns lots of psychatrists lots of money while
being very unhealthy persons with ME.
If their condition is a physical illness,
they will not receive suitable treatment and so will not make a full
recovery.
Quite so - and CBT and GET are
decidedly unhealthy for you if you have a physical disease, for the former is psychobabble and
mostly bullshit and fraudulence, and the latter is positively
harmful and quite sadistic to impose on ill people (see:
On 'exercise as therapy for ME' : The
patients' evidence) - though
presumably these days consciences of psychiatrists and clinical
psychologist disappear whenever their financial interests conflict
with honest rational science, or whenever honest diagnosing would
make them or their friends and colleagues no money.
The psychiatric view of what they term
'chronic fatigue syndrome' (the term 'fatigue' clearly trivialises
the severity of this illness)
Quite so: It is not "fatigue";
it is exhaustion, and that also of
a peculiar kind, I did not know before I fell ill with ME.
has gained considerable ground in the UK in
recent years, aided by the supposed lack of evidence of physical
causes of the condition.
Intelligent readers note again a serious logical problem.
Question: Since when is lack of knowledge - ignorance of cause - a
positive ground for diagnosis? Answer: Since psychiatry got
corrupt, at the KCL and Barts in England, and
lately also at the
APA in the preparation of the DSM-5: Psychiatrists are redefining
and reterming much of the "science" of psychiatry, by inventing
out of thin air such diagnoses, terms, and procedures that will
assign as many ill persons as possible to - also - have some
psychiatric problem ("must learn to cope", "is too concerned with
own health", "mother is too concerned about child's health"),
for
now virtually anything is a psychiatric symptom, by the new DSM-5
the APA hopes to introduce in 2013, to their own great benefit in
money and power.
What evidence can psychiatrists adduce to
support their assertion that ME/CFS is a purely psychological
illness, that is, a form of hypochondria?
None - and the reader can find in Nederlog of the last months
and year excellent reasons that
there is no rational evidence
whatsoever that can "support their assertion
that ME/CFS is a purely psychological illness": All they
offer are redefinitions, lies, insinuations, methodological
malpractices, and pseudoscience to argue that what once was
physical - exhaustion, diarrhea, night sweats, inability to stand
or walk for long without collapsing - now is psychological that is
psychiatric that is hysterical, hypochondric or delusional.
Also, as a psychologist, with 33 years of illness without any
help except minimized dole, I insist that "ME/CFS
is" is in no way at all a "psychological
illness", that is, neither "purely"
or impurely - it is as little "psychological"
as an infection or a virus, or indeed as being drunk.
The whole notion that what medical science at present cannot
explain "therefore" must be psychiatric is completely irrational
stunningly impertinent and at bottom deliberately very offensive
very impertinent knowingly sadistic piece of psychiatric
fraudulent impertinence, and
indeed a step back to the Middle Ages as regards diagnosing and
treating ill people.
Psychiatrists argue that individuals with
medically unexplained symptoms have 'functional somatic syndromes' –
that is, although their symptoms appear to be physical, they are
psychological in origin.
Which is to say they diagnose like witchdoctors, like shamans,
like the inquisition: Your soul is the culprit - you think the
wrong thoughts, therefore you must be ill, and "therefore" you must
pay the witchdoctors, shamans, inquisitioners, psychiatrists and
clinical psychologists who falsely you accuse you of being mad or
a malingerer, great sums of money for the privilege of
not being harassed, defamed, discriminated, demeaned, dehumanized, slandered, and
offended by their ilk of 'healing professionals'.
It has been argued, on the basis of an
analysis of the literature, that having the belief that ME/CFS is a
physical illness leads to a poorer prognosis, and that these faulty
attributions perpetuate the illness.
It can precisely as cogently be argued and 'proved' with
'evidence based medicine' and 'statistics' that having the belief
that one is ill if one is ill "leads to a
poorer prognosis" (one usually is right, for the body
doesn't lie - and lo and behold: one gets ill: "poorer
prognosis" "ergo" psychiatry has once again been
confirmed.
Furthermore, that "faulty attributions
perpetuate the illness" is the purest crap and bullshit
ever since Charcot and Freud misdiagnosed their patients with
hysteria, i.e. with "faulty attributions"
that in their fraudulent words "perpetuate
the illness" - while it lasts, because it is falsely
diagnosed and inhumanly treated.
Thus the fact that these individuals
believe that they have a physical illness is seen as a further
manifestation of their psychological problems.
That's how Wesselytes may present it but "further"
is logically incorrect: The ONLY reasons to treat ME/CFS as a
psychiatric illness are that (1) psychiatrists say it is a
psychiatric illness to make money from ill people - and
psychiatry is a field where crap,
fraud and bullshit have been rampant with misdiagnoses that only
served the financial interests of psychiatrists since its
inception and (2)
governments and insurances like that or allow that psychiatrists
falsely attribute madness to ill people to "cure" them -
for money
because that is cheaper than real biomedical research or providing
help with disabilities other ill people with similar disabilities
do get.
However, if those who assert that they have
a physical illness do indeed have one, the prognosis for recovery
without suitable treatment is clearly going to be poor.
And "if those who assert that they have a
physical illness do indeed " not "have
one" the prognosis for recovery with
CBT or GET is also poor, for these are psychobabble +
aerobics anyway, and that hardly cures anything, except the
financial problems of psychobabblers and aerobics teachers.
One of the main treatments on offer for the
condition is cognitive behavioural therapy (CBT), which has been
shown to lead to a significant reduction in fatigue symptoms.
I am sorry but (1) such studies as I have read were very badly
designed and methodologically seriously flawed and (2) the whole
idea, as argued before, is bullshit
from the start: Only
dumboes find some relief in psychobabblers and only weakwilled
fatsoes have benefit with aerobics.
This finding might be taken as support for
the idea that ME/CFS has a psychological cause.
Yes, but by totally irrational reasoning: On the basis that
some (pseudo)scientific studies are supposed to show that CBT
helps feeling less fatigued it is concluded that the
neurological disease "ME/CFS has a
psychological cause".
That is crazy talk!
However, there is a higher incidence of
depression in those with chronic physical illnesses than in the
general population, although in the case of ME/CFS this has been
found to be no higher than in, for example, rheumatoid arthritis.
Thus CBT may, for a subset of individuals, ameliorate some of the
tiredness resulting from a concomitant depression, while not
addressing the underlying fatiguing disorder.
OK ... that is a possibility. The real problem is that "ME/CFS"
is researched by the pseudoscientific psychiatric frauds as if it
is not a physical disease: First they exclude everyone with
a real disease, including "ME/CFS",
from their studies, in which they only include somehow, in some
sense 'fatigued' persons, and then they say that whatever they
have found in that group (if their methodology were correct, which
it isn't) is true of "ME/CFS".
That's the fallacy of begging the question combined to the sins
- deliberate lack of morality, for personal profit - of dishonesty and incompetence.
It is unclear, however, if this is indeed
the case, as the authors of these studies use ME/CFS classification
criteria that take fatigue as the main symptom. The exclusion of
physical symptoms allows the inclusion of individuals who do
primarily have a psychiatric disorder.
Precisely. To prove that heart patients have no heart disease,
call them hysterics, and "prove" that they are by studying a group
of patients who have no disease whatsoever, and then presenting that as
'evidence based medical science' that these heart patients have no heart disease - and
then recommend CBT to them, to cure them of their concern with heart
disease, and keep the psychiatric brotherhood able to pay their
mortgages and the academic education of their brood.
That is what is happening since two decades with
ME, and the sickening sadistic
frauds and bullshitters - all high income medical doctors of
some kind, all conscious frauds - even
go so far to speak as if they do this from the goodness of their
hearts and while working for "our community of ME patients".
Thus the statistical reduction in fatigue
found with CBT may be largely due to the fact that individuals
suffering purely from depression are included in these studies.
It may be, at least in part. The so called "studies"
are based on psychiatric bullshit to start with, that is, no
better 'evidence based' than
theology, which is just lies and prejudice to keep priestly and
clerical frauds in money and power.
It should also be noted that there is a
lack of evidence of long-term benefits of CBT for individuals with
an ME/CFS diagnosis.
Quite so - but then this is NOT a reason to "research" this
issue: You do NOT need to research by 'evidence based medicine'
whether witchcraft works against impotence or whether prayer cures
cancer.
The higher proportion of women suffering
from ME/CFS is also thought to be evidence that the illness is
psychosomatic.
Whereas in fact it is far more rational to assume it is "evidence"
hormones are somehow involved.
It is unclear why this should indicate a
psychological illness; after all, women are more prone to gallstones
as well.
Well... it is easily clarified by the correct observations that
the whole theory that declares ME/CFS psychiatric and that insists
the latest from of psychiatric psychobabble, that indeed is CBT,
is effective (1) is very remunerative for psychiatrists and (2) is
all from the same nonsense as Charcot and Freud's diagnosing every
woman with problems as "hysteric".
It is noteworthy that when a doctor made a
study of viral illnesses in his patients over a 40 year period, of
those who subsequently experienced central nervous system pathology,
67.8% were women (of whom a third also experienced ME/CFS) and 32.2%
were men (of whom a third also had ME/CFS).
Well... it may be "noteworthy", but not for me without having
seen the study.
Thus there was a clear physical basis for
the disproportionate number of females suffering from ME/CFS in this
study.
Again, I can't agree or disagree without having seen the study.
And as I said above: hormones are a good explanation-in-principle.
(Not specifically female hormones: Some imbalance - too much or
too little - as regards hormones, whether caused by the disease or
causing the disease.)
It has also been asserted that ME/CFS is a
psychiatric illness because patients have often experienced abuse in
childhood.
Also bullshit. Once you have decided that "ME/CFS
is a psychiatric illness" and you "research" it by
"studying" groups of people with some complaints of "fatigue",
any
defamation can be insinuated as "evidence based science".
(Problems in: Your relation, your children, your education, your
religion, your morals - you are just uncommonly weakwilled -
a.s.o. a.s.f. in the name of 'evidence based medicine'.)
However, stressors like abuse are known to
cause physical ailments. For example, it has been found that child
abuse is associated with an increased incidence of ischemic heart
disease.
I haven't seen the study or studies.
It has also been shown that individuals
having severe chronic stressors in the 12 months prior to being
deliberately exposed to a virus were significantly more likely to
become ill than those with acute stressors or a low number of
stressful life events.
Again, I haven't seen the study or studies. My problem with
terms and concepts like "stressors"
are not so easily definable for ordinary people in (apparently)
ordinary circumstances.
Also, I have read too much "research" in psychology and medicine
to take it serious as if that is the natural thing to do.
A mitochondrial problem?
It is clear that there is little evidence in favour of a
psychological explanation of ME/CFS.
Small correction: "there is little"
rational methodologically correctly established such "evidence",
as e.g. in England alone tens of millions of pounds have been
wasted on gathering lots of irrational methodologically
incorrectly established pseudo-evidence.
We therefore need to consider the
biomedical evidence for a physical disorder, of which there is a
considerable amount.
Quite so - and the question enters that then, if so, why these
psychiatrists and psychologists are allowed to defame,
discriminate and offend patiens with ME since decades: Since when
has anyone the right to say that so-and-so is
mad if so-and-so has
a legitimate neurological disease
according to the World Health Organization - as IS the case with
ME since 1969?!
How legal is it to exclude such persons one has declared mad from
disability benefits? How moral is it to force them to work?
To aid simplicity, the approach taken here
is to consider the possibility that individuals with ME/CFS may in
the majority of cases have a similar physical problem, but that it
may have diverse causes.
I have no problem with it - but it is a no-brainer indeed that
something one does not yet fully or indeed partially understand in
rational and empirical terms "may have
diverse causes": Of course! And see
On natural
philosophy, philosophy of science, and psychiatry for the
relevant rational knowledge.
A recent study has found that 70 out of 71
individuals suffering from chronic fatigue had abnormally low
mitochondrial function. Mitochondria are organelles within cells and
are the main producers of cellular energy. Mitochondria have to have
an intact inner membrane to produce energy via a process called the
electron transport chain. There is evidence that a wide range of
chemicals impair mitochondrial function, including pesticides,
herbicides, PCBs, solvents, toxic metals (such as dental amalgam),
plastics, and fluoride. Impairments can also be caused by drugs such
as antibiotics, non-steroidal anti-inflammatories and anti-parasite
drugs.
Quite. Again, I'd like the study referred, but
this is quite
along my own favoured eplanation for ME/CFS c.q. what ails me -
although I also agree that there are other tenable biomedical
explanation that deserve biomedical research.
There are also infections that cause
mitochondrial problems, such as mycoplasma. This is a micro-organism
that lacks a cell nucleus and a cell wall; it damages the inner
membrane of mitochondria, depleting the nutrients in the cells,
disrupting the electron transport chain, and causing chromosomal
aberrations in the host cell. Studies by Dr Garth Nicolson have
shown that individuals with ME/CFS have many bacterial and viral
infections; however, a high percentage of them have mycoplasma
infections. Thus, over a number of studies, Nicolson and his group
have found that between 51% and 68.9% of individuals with a chronic
fatigue diagnosis have a mycoplasma infection.
Again, I would have liked references (but space may have been a
consideration). In any case, it should be qualified that "between
51% and 68.9% of individuals with a chronic fatigue diagnosis
" that they investigated, to be sure.
Most of these studies were carried out in
the United States, but the higher figure comes from a Belgian study,
in which only 5.6% of controls showed signs of the infection.
Nicolson's group has also shown that using a supplement that
restores the mitochondrial membrane leads to both a reduction in
fatigue and an increase in mitochondrial function in individuals
with chronic fatigue.
This then is evidence for their theory that the mitochondria
are involved.
Clearly, the infection scenario is a
complicated one; susceptibility to mycoplasma and other infections
may arise from having an immune system weakened by viruses, and
viruses themselves might damage mitochondria. However, getting rid
of a mycoplasma infection in those affected will be very beneficial
for energy levels, and so reduce stress on the body.
OK: This may explain and help some persons with ME. It is
unlikely to be the explanation for all persons with the diagnosis
ME, and in my own case and that of my ex wife it seems more likely
that it is EBV that our bodies never succeeded in getting rid off,
for whatever reason, that may be genetical, i.e. most who get EBV
recover from it within some weeks to several months, but a
relatively small percentage has genes that do not allow him or her
to recover from EBV.
Chronic exposure to stress can in itself
damage mitochondria and also impair the functioning of the adrenal
glands. Adrenal insufficiency could be a primary cause of ME/CFS in
some individuals, as the symptoms are similar to those of Addison's
disease. Less extreme debilitating adrenal problems also occur. It
has been shown that overworking the stress system leads to problems
in keeping a balance between the functioning of the
hypothalamic-pituitary-adrenal (HPA) axis and the immune system. If
there is an immune challenge, this produces inflammation, and the
actions of the HPA axis reduce it by damping down the inflammation.
However, if the body has to do this often it becomes overstressed
and cannot maintain the balance – this is likely to happen if the
body is dealing with a long-term infection like mycoplasma.
Treatment
What can the NHS do to help individuals with ME/CFS? At the moment,
many individuals are offered expensive but harmless CBT.
It is true CBT it "expensive" but
it is triply false it is "harmless".
First, it is harmfull to waste lots of taxpayers or insurances
money on what is useless. Second, CBT is harmful just as Maoism
is: It is mostly bullshit, and involves nonsensical assumptions
and techniques. Thirdly, it is harmful to make ill people waste
time on bullshit and enriching psychobabblers: It causes their
state to deteriorate, simply having to go physically to the
psychobabbler.
See: 101 Good
Reasons :
Why it is wrong to provide CBT and GET to ME Patients.
This technique is now widely used for so
many illnesses, including cancer, that it can even be purchased
online.
It may be widely used, like astrology is, but that is no "proof:
it works as advertised or indeed makes sense all, or is not
an extremely
expensive way to get some synthetical shows of would be paid sympathy
from people who
pretend they are qualified to heal the soul or the body.
They are also offered potentially damaging
graded exercise regimes.
To offer GET to persons with ME is something that ought to be
forbidden as is playing Russian roulette to teenagers: If it
builds character or brings money, than at the cost of crippling or
mortally dangerous risks.
Exercise can be very beneficial, but not if
misinformed practitioners believe their patients to be depressed and
persuade them to exercise beyond their reserves of cellular energy.
Pacing is excellent and can cost nothing – here, individuals make
sure that they keep their activity level within their energy
envelope, and so avoid bouts of disabling exhaustion.
In order to help at least some people recover, it would seem a good
use of resources for the NHS to screen ME/CFS patients for low
mitochondrial function, adrenal problems (not just testing cortisol
levels at midday) and mycoplasma infections.
Quite so. And indeed to do the same with persons with
"fatigue".
The latter can be treated by antibiotics,
which if administered early on could mean that these individuals
would avoid having to suffer this debilitating disease for decades,
with the consequent weakening of their adrenal glands. Removing this
infection is unlikely to lead to an immediate cure for long-term
sufferers because of collateral damage to other bodily systems, but
there must be a chance that a proportion of individuals will regain
their health and lead happier and more productive lives.
So... I am still around and about, but caught in one of the
familiar circles - for those with ME, and no doubt for others - too
much pain to sleep well; too little sleep to get a bit better.
Eventually, one may get out of it it.
