2. My notes to ME: International
3. Place of the ME: International Consensus Criteria
This continues the
previous Nederlog that contains most of the text of
This is the title, and it has no less
than 26 authors, from no less than 13 different
countries, who were 100% agreed on the published paper.
The last link I provided is to a
html-version on the site of the English ME Association, that I have partially reproduced in the previous Nederlog. The next two links are to a pdf-version
and to a Phoenix-Rising Forums thread on the subject:
I have left standing one of the opening
quotations of the previous Nederlong, indeed a "quotation" that is
mostly taken from Catch-22, that sums up what I consider to be stark
raving moral and medical incompetence if not medical sadism on the part
of a subset of psychiatrists who seem to have taken over the APA and
the DSM-5, for which - in case you think the psychologist and philosopher who
writes this "exagerrates" - see:
I concluded the previous
Nederlog with this on the ICC for ME aka Myalgic
Encephalomyelitis: International Consensus Criteria:
My first comment is that I am very glad to
see this, given the horrible rot - I'm sorry: I am also a moral
human being and a philosopher of science, and that is what it seems
to me - produced by the APA and the DSM-5.
This is a very welcome rejoinder to them,
also since it is explicitly directed at first line medical doctors -
GPs and such - by first line medical doctors with great expertise in
And my second comment is that, since I sowed 70
notes to be made, these will be in the next issue of Nederlog, where
I will also explain why I make them, and link back to this text,
that then will be updated to link to that.
So... here they are, with the parts I comment on
all nicely quoted in blue with
indentation, with my comments without indentation and in black under
it, and my remarks that my notes are in part personal, and
reflect my own experiences with ME since 32 years, and those
of my ex-wife, who had it the first six years with me, after
which we divorced, to try to survive separately instead of going
down together for total lack of help. At the end of each note there
is a "Back" that, when underlined and clicked, leads the reader back
to the text at the beginning of the quoted and commented passage,
that in turn ends with the underlined number of the quotation as
link to my
comment in this file. The conditions for this clicking and linking to work are
that the reader is on line or has downloaded both files in the same
Finally, my reasons to compare myself and my
ex-wife with the text of this paper are to see whether this paper
works in practice, for me, and indeed it does, which is a
sort of proof of concept, and also to have something to refer
my medical doctors to: "There it is, by 26 specialists from 13
countries, with my own assessment of myself in its terms. See
whether you disagree, and tell me whether I have this or whether I
am insane - "a somatoformer", and with your signature, please."
2. My notes to ME:
International Consensus Criteria
[M1] Myalgic Encephalomyelitis: International
I note four interesting things about the title:
(1) It does neither use "CFS" nor "Chronic Fatigue Syndrome", for
reasons the paper explains, that are good and to the point; (2) it
uses "the classical name" for the disease, by which I indeed learned
about it in 1989, when I had it for some 10 years; and (3) it does
not use other versions of that name that have been used or proposed
by some, notably "Myalgic Encephalopathy" and "Myalgic
It may be argued on etymological grounds that
these last two alternatives might be better, but then the problem is
that much good research has used the name "Myalgic Encephalomyelitis".
The reason the classical name is a good name is the one just stated,
with the fact that "CFS" and cognates have been used by much bad
research by psychiatrists, and pooh-poohs the disease, quite
intentionally also, judging by More about the DSM-5 and psychiatry.
Finally, (4) this is called the
International Consensus Criteria
and that is both a very good idea and proposal, and justified by the
work done, and by the 26 authors from 13 countries.
[M2] Journal of Internal Medicine, 20 July 2011
That is, a journal of what is widely regarded as
the most difficult branch of real medicine, as opposed to
psychiatry, which is also a branch of medicine, for unfortunate
historical reasons: More about the DSM-5 and psychiatry.
The label “chronic fatigue syndrome” (CFS) has
persisted for many years because of lack of knowledge of the
etiological agents and of the disease process. In view of more
recent research and clinical experience that strongly point to
widespread inflammation and multisystemic neuropathology, it is more
appropriate and correct to use the term “myalgic
encephalomyelitis”(ME) because it indicates an underlying
pathophysiology. It is also consistent with the neurological
classification of ME in the World Health Organization’s
International Classification of Diseases (ICD G93.3).
Quite so, except that I personally would stress
that the term "CFS" has been introduced on purpose by Reeves in the
US and Wessely in UK with the express aim to propagandize the
psychiatric delusion or
Big Lie that ME is not a real
physical disease but a mental disease that psychiatrists should
profit from, by way of the insurance companies and state
bureaucracies: More about the DSM-5 and psychiatry.
Then again, I am both
a patient of more than 32
years standing and
a psychologist and
philosopher, and I can say
rather more of the real and bitter truth in my capacity as an
invalid patient than people who hope to continue an academic career
Consequently, an International Consensus Panel consisting of
clinicians, researchers, teaching faculty and an independent patient
advocate was formed with the purpose of developing criteria based on
current knowledge. Thirteen countries and a wide range of
specialties were represented. Collectively, members have
approximately 400 years of both clinical and teaching experience,
authored hundreds of peer reviewed publications, diagnosed or
treated approximately 50,000 ME patients, and several members
coauthored previous criteria.
In other words: These are none of them
more or less
slightly nutty and creepy lying and intrigueing shrinks -
these are real medical doctors, real medical researchers, with a
very great amount of experience and expertise concerning ME.
This again deserves stressing: The 15 to 30 nutty
and creepy lying and intrigueing shrinks whose aim it must be
to drive people mad, make them poor and miserable, and have all help
and support denied to them, are NOT excellent medical scientists,
but fraudulent pseudo-scientists plugging their own interests
shamelessly, on the ground that journalists and politicians will be
swayed by their propaganda and standing as "professor of
The expertise and
experience of the panel members as well as PubMed and other medical
sources were utilized in a progression of
suggestions/drafts/ reviews/revisions. The authors, free of any
sponsoring organization, achieved 100% consensus through a Delphi
That is, in other words: Not only are the 26
authors experts, they also have used a sophisticated method to come
to agreement. See the Wikipedia:
The scope of this paper is limited to criteria of ME and
their application. Accordingly, the criteria reflect the complex
symptomatology. Operational notes enhance clarity and specificity by
providing guidance in the expression and interpretation of symptoms.
Clinical and research application guidelines promote optimal
recognition of ME by primary physicians and other health care
providers, improve consistency of diagnoses in adult and paediatric
patients internationally, and facilitate clearer identification of
patients for research studies.
This is a sensible restriction: "this
paper is limited to criteria of ME and their application",
also because that is in the patients' interests. The rest of the
quoted paragraph is quoted because it is good methodology, whereas
what I have seen in the psychiatric publications about CFS was
simply rotten all the way: rotten methodology, rotten logic, rotten
statistics, rotten morality (yes, I do know these four subjects a lot
better than the vast majority of medical persons), next to rotten
medicine, and rotten legality - see Sophia Mirza's mother: the
section Legal on the website
Sophia and me.
Myalgic encephalomyelitis (ME), also referred to
in the literature as chronic fatigue syndrome (CFS), is a complex
disease involving profound dysregulation of the central nervous
system (CNS) [1-3] and immune system [4-8], dysfunction of cellular
energy metabolism and ion transport [9-11], and cardiovascular
Indeed - and it is because of facts like these
that psychiatrists who have been denying this for decades, by all
sorts of means, lies, tricks, innuendos, and blatant falsehoods of
the form "Evidence suggest that it may be that...", which is the
Tool Of Choice for the psychiatric bullshitters and liars who have
been falsely, unscientifically, immorally - and indeed either medically
illegal or at least highly doubtful - spouting rot about what they blatantly and falsely
style "CFS", without ever mentioning there are real medical
scientists who disagree with them.
pathophysiology produces measurable abnormalities in physical and
cognitive function and provides a basis for understanding the
Quite so - except that some 15-30 psychiatric
frauds and clinical psychologist frauds have been insisting for
decades now that medical doctors should not do or ask for research
of patients with ME, because these frauds insist people with the
symptoms with ME have been making it all up. (Indeed like Christian
fanatical anti-Darwinists: "It is all in the Bible/psychiatric
handbooks - real scientific research is morally evil and quite unnecessary.")
In this context: What is more likely: (1) millions
of patients, including many academically educated people who
have been saying for decades they are ill, all the time supported by
real medical research that lots is wrong with people with their symptoms
if these are properly investigated by knowledgeable doctors or (2)
15 to 30 shrinks with university tenure, who claim all these millions are at
least as crazy as the psychiatrists who insisted for decades that people with
stomach ulcers or with MS? Before these diseases were established to be
not "all in the mind"?! Back.
The problem with broadly inclusive criteria [15,
16] is that they do not select homogeneous sets of patients. The
Centers for Disease Control prevalence estimates increased tenfold
from 0.24% using the Fukuda criteria  to 2.54% using the Reeves
empirical criteria .
This concerns the psychiatric alternative
criterions, in fact mostly proposed and drawn up in the pretense
that there was and is no good biomedical research into ME.
All of these psychiatric alternative criterions
involve the following two blatant fallacies, on purpose, unless one
can become a psychiatrist while having half my IQ, which while
logically possible is quite unlikely:
A. They diagnose what they are pleased to call
"CFS" by the symptom of fatigue - and not on the basis of real
B. For research, they take care only to accept in their samples
people who may be fatigued but have no other medical symptoms (like
the vast majority with ME does have, if properly researched).
C. The results of their research is automatically extended to anyone
with any form of fatigue, due to any cause, provided it is not
evidently related to a known disease.
That's not science: that's
pseudoscience. (It gets published because the peers of
psychiatric frauds must logically be .... indeed: "And so it
Jason et al.  suggest
there are flaws in Reeves’ methodology because it is possible to
meet the empirical criteria for ME without having any physical
symptoms and it does not discriminate ME/CFS patients from those
with Major Depressive Disorder.
My own guess - see my previous remark - is that
Jason is quite right, and for what it is worth I can remark that I
have been severely depressed while having ME, and have had ten years
of ME before that, and 20 years of ME after that (which in my case
responded well to Prozac, after not responding to anything else).
[M11] Patient sets that
include people who do not have the disease lead to biased research
findings, inappropriate treatments, and waste scarce research funds
Indeed, and that is the very polite version. My
own view is that it is highly probable that, restricing myself to
just the US, the UK
and the Netherlands, many tens of millions of dollars have been
totally wasted on "research into CFS" by pseudoscientific
psychiatric frauds, who did the research to give their group of
pseudos access to the insurance money of millions of genuinely ill
people, by pretending they are not physically ill but mentally ill.
I do not think the vast majority of millions of
patients with ME have 1/100th of a reason to claim falsely they are
ill as 15-30 psychiatrists DO have to pretend falsely these millions
of patients should PAY PSYCHIATRISTS to be "cured" from their
delusions that they are physically ill.
Cui bono is
a good question, and the persons who have made millions by denying
medical research or social support to people with ME -
psychiatrists, clinical psychologists, managers of health insurance
companies, governmental bureaucrats bend on finding money to save
bankmanagers with - have made millions by denying medical
research or social support to people with ME, over the last two
decades, simply by pretending people with ME are not ill, and should
be seen by psychiatrists or clinical psychologists, for money, and
are not entitled to the health benefits other ill people have been
entitled to as a matter of course.
The Canadian Consensus Criteria were used as a
starting point, but significant changes were made. The six-month
waiting period before diagnosis is no longer required. No other
disease criteria require that diagnoses be withheld until after the
patient has suffered with the affliction for six months.
Quite so: It's hardly hard science. Also,
especially for children and teenagers with ME, this may create more
serious problems than necessary. For adults, it may make little
difference, given the - slow - speed with which the health system
works for non-millionaires, but it is a good thing if medical
doctors are more aware of the possibility of ME for people with EBV,
for example, to which class my ex-wife and I belong, who both got
EBV in the first year of our university studies, and may have ruined
a chance of avoiding ME if we had known that soldiering on (trying
to push through one's symptoms, as we had to, if we wanted to remain
in university) may be
... diagnosis should be made when the clinician is
satisfied that the patient has ME rather than having the diagnosis
restricted by a specified time factor. Early diagnoses may elicit
new insights into the early stages of pathogenesis; prompt treatment
may lessen the severity and impact.
Yes, especially if the ME develops from EBV, as it
often does: Doctors should tell people with EBV that there is a risk
it won't go away, especially if the patient tries to exercise or
struggle through it: With ME that does not help, and instead much
increases the probability one will get worse, and remain worse. (I
know, because I have been forced to struggle very
much, simply to survive or do shopping.) Back.
[M14] Using “fatigue” as a name of a disease gives it
exclusive emphasis and has been the most confusing and misused
criterion. No other fatiguing disease has “chronic fatigue” attached
to its name – e.g. cancer/chronic fatigue, multiple
sclerosis/chronic fatigue – except ME/CFS.
Quite so, and as I remarked before: This name was
given to the disease on purpose by Reeves and Wessely, to as to make
it sound plausible to politicians, bureaucrats and journalists that
the lies Reeves and Wessely wished to tell about ME - "Trust shrinks: It's no
disease, it's delusion. Just hand them over to us, and we will teach
'm, for good pay to us, who are also marginally cheaper than real
medical scientists" - would be believed.
in other conditions is usually proportional to effort or duration
with a quick recovery, and will recur to the same extent with the
same effort or duration that same or next day. The pathological low
threshold of fatigability of ME described in the following criteria
often occurs with minimal physical or mental exertion, and with
reduced ability to undertake the same activity within the same or
Quite so: My ex and I found soon after being ill -
within half a year - that what was most peculiar about what bothered
us were (1) we had to somehow pay back nearly all physical efforts we had
to make, so as to be part of society (in our case: attending
university) and (2) rest helped, but not much: We got usually awake
feeling almost as rotten as when we had gone to bed.
(Please insert Table 1 here.)
I have done that in my html-version. (It was not
done in the html-version of the MEA nor in the pdf made from the
Myalgic encephalomyelitis is an acquired
neurological disease with complex global dysfunctions.
I agree that seems a good description of what
ailed my ex-wife and me, and indeed have developed clear
neurological symptoms as the disease went on and grew worse.
are: 1. Marked, rapid physical and/or cognitive fatigability in
response to exertion, which may be minimal such as activities of
daily living or simple mental tasks, can be debilitating and cause
a relapse. 2. Post-exertional symptom exacerbation: e.g. acute
flu-like symptoms, pain and worsening of other symptoms
Quite so. Also, having the disease for over 3
decades now I'd like to add that, at least for my ex and I - who
both got an M.A. in psychology, but not the health to make money
with it - it was a kind of "fatigue" that was quite unlike
ordinary fatigue, and easily distinguished from it; that was much
more like exhaustion - as when just having run the marathon after
a night of excellent sleep - than like "fatigue" or "tiredness";
and that was clearly highly correlated with our aches, pains and
other symptoms, like migraine, diarrhea and night sweats.
Recovery period is prolonged, usually taking 24 hours or longer. A
relapse can last days, weeks or longer. 5. Low threshold of
physical and mental fatigability (lack of stamina) results in a
substantial reduction in pre-illness activity level.
Quite so. Also, having been forced to force
myself more than I felt I could do reasonably, with my ill health, I know one can thus be
forced into making oneself worse for months or years: It is much
as if exerting oneself produces more of a too little or too much of
something that makes one miserable.
For a diagnosis of ME,
symptom severity must result in a significant reduction of
a patient’s premorbid activity level. Mild (an approximate 50%
reduction in pre-illness activity level), moderate (mostly
housebound), severe (mostly bedridden), or very severe (totally
bedridden and need help with basic functions).
In these terms I have had relatively mild ME for
the first ten years, and moderate to severe ME for the last twenty
years. I have so far escaped very severe ME, and am forced to
commit suicide if I get it, given the amounts of neglect and
discrimination I have suffered in Amsterdam with this disease
(that is also due to my having
the courage to think "out of the
box" in many ways, and say so in public: See
ME in Amsterdam).
[M21] Recovery time: e.g. Regardless of a patient’s
recovery time from reading for 1⁄2 hour, it will take much longer
to recover from grocery shopping for 1⁄2 hour and even longer if
repeated the next day – if able.
Quite so: I can do so once a week, when I take
care, and am relatively non-ill that day, and then I probably
cannot do anything like it for several days. This has been so for
decades now, in spite of my having it described hundreds of
excellent and very clear Dutch,
to people who ought to care and help me in some way, since
society pays them to help others. But no - "we all have the
strength to bear the pains that others suffer" (Rochefoucauld).
Indeed, this also is one reason I am much less
ordinary human beings than I was before I fell
ill, and forced to admit that hardly anyone I explained my pains
and problems to seemed to care in any way - except to see if my
pains and problems could be made worse, since I am evidently not an ordinary man,
whether healthy or ill. (Nor were
my parents and grandparents.)
It also explains much, in principle, about the
eagerness with which many Dutchmen collaborated with the Nazis,
and the great joys many must have felt betraying their
Jewish neighbours to the SS, often for a little money. (In
Holland, more than 1% of the total population was gassed: See:
In Nederland regeert de leugen
my family was in The Dutch Resistance in WW II.)
[M22] b. Short-term memory loss: e.g. difficulty remembering what one
wanted to say, what one was saying, retrieving words, recalling
information, poor working memory
Quite so: While having had, and still to some
extent having, a remarkably good memory, I can since I have mild
to severe ME suddenly totally loose the topic I am talking about,
and am much worse in keeping large amounts of new data in mind
(such as is required for mathematics and programming).
Significant pain can be experienced in
muscles, muscle-tendon junctions, joints, abdomen or chest. It is
non-inflammatory in nature and often migrates. e.g. generalized
hyperalgesia, widespread pain (may meet fibromyalgia criteria),
myofascial or radiating pain
Indeed, and my first explicit diagnosis, by my
excellent GP, who knew me well, was "ME/FM" i.e. one of either,
depending on research. But then there was no research, since by
then Wessely and Bleijenberg had succeeded in acquiring the power
to destroy god knows how many Dutchmen with my disease, I must
assume to their
great joy ("Significant pain can be
experienced": "O let's tell these undeserving ill once more
they are making it up: Joy, joy, joy!"):
"The mild and the long-
suffering may suffer forever in this world. As long as the
patient will suffer, the cruel will kick."
-- Rev. Sidney Smith
"We never hurt each other but by error or by malice."
-- Sir Robert Chambers, possibly inspired by
Unrefreshed sleep: e.g. awaken feeling
exhausted regardless of duration of sleep, day-time sleepiness
Quite so (except that I'd write "unrefreshing
sleep"): That has always been so, both with my ex and myself, to
which must be added that both of us, but especially I, had
problems falling asleep, staying asleep and sleeping in the day
time. This may be part of the disease for me, or be caused by
pain, or both.
What is quite striking is waking up as miserable
and exhaused as one fell asleep - and I notice it because only
very lately, very highly correlated with B12 supplements, this
abided some, that has been so for 20 years continuously, and years
to the extent that I woke up feeling like a plank, hardly able to
move, and had to sort
of find energy to get up from that, by slowly recovering from
that, over the course of 2 to 4 hours.
Motor: e.g. muscle
weakness, twitching, poor coordination, feeling unsteady on feet,
Quite so, again: I have much weaker muscles in
my arms and hands; I cannot walk one percent of what I could walk
unproblematically when healthy; my motor coordination in my hands
is worse (as can be seen in my handwriting); and I am often
unsteady on my feet.
Neurocognitive impairments, reported or
observed, become more pronounced with fatigue.
Indeed: These are strongly correlated in my case, for
over 30 years. This is clearest in my memory for words, and in
my ability to do mathematics and programming, and in my spelling,
where it seems to me, as may also explain other people's problems,
that a control thread that is present and working when I am healthy or
not too ill, simply ceases to work when my condition get worse,
and I find myself - for example - writing things phonetically without seeing
I make that mistake, which was inconceivable for me when healthy,
because I have a visual memory of words, that as a child made it
mostly unnecessary to learn to spell. But with ME it happened - it
may even be in Nederlog or my site - that I koot right dis, when I
know perfectly well I should write "could write this", and that I
never did so before falling ill.
Sleep disturbances are typically expressed
by prolonged sleep, sometimes extreme,
Not in my case, at least the last 25 years: For
me it is very problematical to sleep 6 to 8 hours each 24, even
with sleeping pills. But then I seem to wake up because of pain,
and not to be able to sleep for the same reason. (It's true - so far
- that in the end I sleep, unrefreshingly.)
Motor disturbances may not be evident in mild or
moderate cases but abnormal tandem gait and positive Romberg
test may be observed in severe cases.
Quite so: I walked, in so far as I could,
unproblematically untill some 6 or 8 years ago, when my left leg
started to refuse to work properly, on occasion, but for long
times, i.e. months on end, when it grew less again, to reappear
after a few weeks. In fact, I first became aware this may be part
of my ME when I read about the symptom in professor Hooper's Magical
Medicine (pdf) or THE
MENTAL HEALTH MOVEMENT:
PATIENTS? or some of his other excellent writings about ME, just
as professor Hooper was the first person I read writings about ME
from who clearly knew science and methodology and statistics and
logic as I do - and indeed, he is a professor emeritus in medical
chemistry, which is a real science, as psychiatry is not.
Gastro-intestinal tract: e.g. nausea,
abdominal pain, bloating, irritable bowel syndrome
I have certainly had abdominal pain, bloating
and an irritable bowel the past six years or so, and maybe since twenty
years if only the last is considered, but this got less with
giving up gluten as in bread some 6 months ago, and also may have
gotten less due to B12, though this is less likely. My ex had
several years with long periods of intermittent diarrhea.
[M30] Genitourinary:e.g.urinary urgency or
Indeed, and for years - and interestingly, this
abided mostly when I started using B12: I am now urinating more or
less normally again, as I did for decades, and no longer in many
brief driblets many times a day, accompanied by considerable
urgency. (This is one of the reasons I am
quite positive B12 works for me.)
orthostatic intolerance, neurally mediated
hypotension, postural orthostatic tachycardia syndrome,
palpitations with or without cardiac arrhythmias,
Indeed: I seem to have low blood pressure ("seem
to", because in Holland medical doctors "know" - it
seems - that you are a subhuman
or at least not fit for being medically investigated when you say
you have been diagnosed with ME), and I certainly have had
symptoms of orthostatic intolerance, though again it took
professor Hooper's texts to teach me it too is related to ME.
Also, I have once collapsed with the symptom in
the street, and while being decently dressed and speaking in a
civilized accent, it took me some 15 to 30 minutes to move a
passer by to ring the bell of the house of a friend for me, before whose
door I had collapsed: Most people passed by as if I was not laying
there and was not asking politely for help.
This is again an experience that taught me much
about Nazism, collaboration, communism and ordinary men. (If you
do not seem to be an
ordinary man, in any way whatsoever, ordinary men will treat
you as if you are not one of them - which has the setback that
this means that in effect anything is allowed against you, by
them: You are not "normal", "hence" "immoral". Racial
discrimination and xenophobia have the same human-all-too-human
foundation. And yes, this phenomenon has been investigated by
social psychologists, and documented up to the level of students
doing an exam on ethics stepping over people lying ill in the
street - it seemed: it was an experiment - to be in time for the
exam, in the principles of ethics. This I knew when I was myself
lying in the street, but even so, it is a striking experience of
man's (in)humanity to man.)
Loss of thermostatic
stability: e.g. subnormal body temperature, marked diurnal
fluctuations; sweating episodes, recurrent feelings of
feverishness with or without low grade fever, cold extremities
Quite so: Both my ex-wife and I have run a
temperature - slightly higher than is normal for us - for many
years since getting EBV in January 1979, and I have had some 10
years of major night sweats, waking up almost every day in a pool
of sweat, that I could also ladle off my torso as if standing
under a shower at night.
That abided considerably after 10 years, and
never got as bad again, but then it may have been part of anaerobic
production of energy, that also broke down eventually, for the
first 10 years I could do more than the last 23 years with the
Then again, I still have it occasionally, and I
also have had several years that in the morning, after waking up
and at long last, after several hours, feeling capable to stand up
and do the two steps to my easy chair in front of the computer,
that the sweat dripped from my head, as from a faucet, for quite a
Patients who have orthostatic intolerance may
exhibit mottling of extremities, extreme pallor or Raynaud’s
Phenomenon. In the chronic phase, moons of finger nails may
Both my ex-wife and I had extreme pallor, and
she also had
Raynaud’s Phenomenon (lower half of the pictures in the
Wikipedia link), that our doctors did not know about, did not care
about, or lied about.
Migraine may be accompanied by a rapid drop in
temperature, shaking, vomiting, diarrhoea and severe weakness.
My ex-wife was troubled with years of migraine
and diarrhoea. I rarely have either, also before I was ill.
focusing eyes and reading are common. Children may become
dyslexic, which may only be evident when fatigued.
Again a symptom of myself that I first read
about in professor Hooper, who can hardly be praised too much, for
intelligence, courage and morality.
processing of information makes it difficult to follow auditory
instructions or take notes. All cognitive impairments worsen with
physical or mental exertion.
Quite. This was early clear to my ex-wife and I
(both with IQs easily above 145) but then we both blaimed it on
"being tired all the time", which I now think probably was too
simple-minded an explanation: Given my other neurological
symptoms, it seems likely something is not as it should be in my
brain, though I am still uncommonly bright, but not by as much as
I used to be till 28, when I fell ill.
Pain or sleep
disturbance may be absent in rare cases.
My ex and I both had pain and sleep disturbances
from the beginning, and believed it was part of the disease, since
neither of us had ever had them before. (My own guess would be
absence of these symptoms is a probable sign it may not be ME/CFS,
but then I agree I have not seen many patients with ME, and must
judge from my own case and that of my ex - but then collectively
that is nearly 40 years of direct experience with the disease.)
[M38] Co-morbid Entities: Fibromyalgia, Myofascial
Pain Syndrome, Temporomandibular Joint Syndrome, Irritable Bowel
Syndrome, Interstitial Cystitis, Raynaud’s Phenomenon, Prolapsed
Mitral Valve, Migraines, Allergies, Multiple Chemical
Sensitivities, Hashimoto’s Thyroiditis, Sicca Syndrome, Reactive
Depression. Migraine and irritable bowel syndrome may precede ME
but then become associated with it. Fibromyalgia overlaps.
As I said, my good GP, who of all the doctors I
have seen knew me best, thought I might as well have ME as FM, in
view of the pains I had; my ex had irritable bowel syndrome in the
beginning of the disease, for years, and I the last six years or so,
my ex had Raynaud’s Phenomenon and migraines; it is not at all
unlikely I have Hashimoto's, but again this is something that in
Holland seems to be only taken serious by very few doctors, and not
to be tested for well at all; I have had reactive depression, but this was
not because of ME itself.
A study of patients from a twin
registry suggested that environmental factors may outweigh any genetic
predisposition in broad based patient populations .
I am myself strongly inclined to believe part of
the cause is genetical. My main reason is that my ex and I both fell
ill with EBV, that did not go away in either of us, while EBV is a
quite common disease (in Holland), that most recover from within
several months at most, though it is known it is a disease that may
take months to recover from.
Then again, terms like "environmental
factors" and "genetic
predisposition" are vague and ambiguous.
a study of the Reeves empirical criteria , Jason et al 
reported that thirty-eight percent (38%) of patients diagnosed with
Major Depressive Disorder were misclassified as having CFS and only
ten percent (10%) of patients identified as having CFS actually had
This may be so, but then "CFS" and "ME" have
multiple definitions, and are understood in quite a few different
“Malaise – a vague feeling of discomfort or
fatigue”  is an inaccurate and inadequate word for the
pathological low-threshold fatigability and post-exertional symptom
flare. Pain and fatigue are crucial bioalarm signals that instruct
patients to modify what they are doing in order to protect the body
and prevent further damage.
Quite so, and that is also why doctors and
therapists and quacks who tell people with ME to exert themselves
are bullshitting them, and may be quite well indulging themselves in
what may be unconscious sadism.
The psychiatric notion that
pain must be explained psychiatrically as a mental health problem is
obvious sick sadism: One's body tries to inform one of what is not
good for one by growing painful or fatigued, and these are
natural signals to desist, if one can.
When an exercise test was given on
two consecutive days, some patients experienced up to a 50% drop in
their ability to produce energy on the second evaluation .
This is what is true for me since decades: if I do
too much on one day, such as going shopping, which I must do
occasionally so as not to starve, I will have to pay this back the
next days. I can force myself to do more, but the price is more
pain, more exhaustion, and a longer period of recuperation, and
these findings are consistently the same over the nearly 33 years of
my disease - briefly before which I was fit enough to run a
live-stock farm single-handedly, which I can assure the naive as
regards farming is heavy labour indeed.
Neuroimaging studies report irreversible punctuate
lesions , an approximate 10% reduction in gray matter volume [67,
68], hypoperfusion [69-74] and brain stem hypometabolism .
These are not nice things, and it seems to me
hypoperfusion is one possible cause of such neurological symptoms as
I have, though this is mere guessing.
Patients’ perception that simple mental tasks require
substantial effort is supported by brain scan studies that indicate
greater source activity and more regions of the brain are utilized
when processing auditory and spatial cognitive information [78-80].
Indeed - as was demonstrated to me, in the face of
my own disbelief: There are some cognitive tasks that cost me a lot
of trouble, and that I undoubtedly could have done very easily when
healthy, and they relate to handling complex rapid visual input (and
perhaps also aural input, but that wasn't tested).
Poor attentional capacity and working memory are
prominent disabling symptoms [20, 78, 81].
Quite so: Even with ME, up to 21 years ago I was
much better in programming than I am now, when I rarely do it,
because (i) I usually feel too exhausted anyway and besides (ii) I
know that if I try it often seems I can not retain 1/10th of what I
could easily retain when healthier. Also, I forget far more easily,
and cannot recall things I did or read a brief while ago.
Then again, when I feel better, these things are
better too, in some rough proportion.
Most patients have an acute infectious onset with
flu-like and/or respiratory symptoms.
Indeed: With my ex and I it started with bad cases
of EBV, that for each of us grew less after some 10 days, and then
never went away, or so it seemed to us. One explanation we hit upon,
quite early, namely in 1979 or 1980, was that something had upset
the recuperation process, as if it had been bugged as computer
programs may be bugged: Programmed in the wrong way, to do the wrong
thing. This still seems to me to be an interesting hypothesis, i.a.
because recuperation from disease must be a distinct bodily process
or processes, that differs from the processes used when one is
The consistent clinical picture of profound energy
impairment suggests dysregulation of the mitochondria and cellular
energy metabolism and ion transport, and channelopathy [9- 11, 103,
This is an explanatory hypothesis I reached myself
in 1987, when I dived into biochemistry with a series of facts I had
established about my own illness. (Of course, this is no guarantee
it is true, at all. And in fact, one of the things I did discover,
or made more clear to myself, when reading up in biochemistry, is
that while there is a lot of biochemistry known, there is a lot that
is not known - and biochemistry is a real science, unlike
psychiatry. O, and in this context: As I must have told tens of
medical doctors: I do not mind at all if one doesn't know something,
and honestly owns up to it. I myself do not know most of the things
I would like to know. I do mind if one doesn't know something,
but starts bullshitting to cover up
one's ignorance e.g. because one lacks the self-respect to honestly
own up to one's
and I mind a lot if medical doctors show this weakness, since they
are paid very well to behave morally, and I suffer the pains and
miseries from their mistakes.)
Findings of “small heart” with small left
ventricular chamber and poor cardiac performance in patient subsets
[112, 113] support previous reports of cardiac and left ventricular
dysfunction [114-116], which predispose to orthostatic intolerance
This may be so for some, and it may be so for me,
but I doubt it, for my heart has been tested when I was ill and
found to be quite good, and before I fell ill I could run a farm,
ski, swim, dive, and walk 50 kilometers without any trouble.
Low blood pressure and exaggerated
diurnal variation may be due to abnormal blood pressure regulation
This seems to me to be quite likely in my case:
Low blood pressure, possibly not enough blood. Then again, to get
this properly researched in Holland while one is not a millionaire is quite
Measurable vascular abnormalities suggest
that the brain is not receiving sufficient circulating blood volume
in an upright position [12, 117], which is intensified when standing
in one place such as a grocery store check-out line.
Quite so again: Both my ex and I found quite soon
in our disease that it was easier to walk than to stand still. Then
again, my ex was researched for vascular abnormalities, but nothing
was found - which doesn't prove much but is a fact. (In fact, an
underlying problem here, and in much that touches ME in medicine, is
that many medical doctors seem to believe the myths that non-doctors
believe about doctors, such as that medical doctors know all that's worth knowing
are remarkably intelligent people. Both are hopelessly false: No medical doctor knows more than at most a few
percentages of what is worth knowing in his or her specialism, as
indeed is the case in any science, and medical doctors are as a rule
not extremely intelligent, nor should they be: The professional group
that is the most intelligent in academia are the mathematicians and
theoretical physicists, and most medical doctors don't come close,
and besides it is better that medical people excel morally or humanely than in sheer
abstract thinking power. Besides, part of what makes a really good
medical doctor really good are intuitive judgment and empathy, which
are not so easily quantifiable.)
Significant reduction in heart rate variability during
sleep is associated with poor sleep quality and suggests a pervasive
state of nocturnal sympathetic hypervigilance .
Possibly so. What I know for a fact is that both
my ex and I were not much helped by sleep, though we also were
considerably harmed by not getting enough.
Diagnostic criteria serve two necessary but divergent
functions – the first is diagnosing individuals in a clinical setting
and the second is identifying patient sets for research studies.
Indeed - and this is one of those elementary
methodological facts on the denial of which the DSM-IV and DSM-5
have been and are being surrected: Whereas the DSM-III was based on
the correct methodological principle that to obtain reliably
consistent diagnosis from different doctors, one needs
operationalized definitions that are empirical and univocal in
meaning and application, the DSM-IV seems to have been based on the
systematic confusion of (i) empirical operationalized definitions of
diseases and (ii) theoretical and conceptual definitions of
diseases, apparently taking an imitation of the former for the
latter, while the DSM-5 tries to systematically undo all possibility
of univocal or empirically operationalized definitions, and does so by making
all diagnosing depend on many dimensions and also on the personal
vagueries of what this or that medical doctor may believe or at
least claim is "too much" of something that the APA frowns upon (caring
for you children, or believing they are ill when the shrink says
it's not so, will make you have a "factitious disorder", for
which you can be sectioned, if the DSM-5-as-is will be accepted in
Symptoms interact dynamically within a stable cluster
because they share the same deep causal roots. Patients’ contextual
observations are essential in determining the expression of interaction
of symptom patterns and severity of their impact.
This is true in principle, and indeed was also
insisted upon by dr. William Osler, after whom
"Osler's Web" was named. The problem is that even so, to tease out "the
same deep causal roots" and have biochemical proof of it is
not at all easy - but then that is not the fault of medical doctors.
Symptom severity impact must result in a 50% or
greater reduction of a patient’s premorbid activity level for a
diagnosis of ME. Mild: approximately 50% reduction in activity,
moderate: mostly housebound, severe: mostly bedbound, and very severe:
bedbound and dependent on help for physical functions.
This means that I have had some 10 years of mild
to moderate ME, and since then some 23 years of moderate to severe
ME. Then again, I have never had very severe ME.
Symptom severity hierarchy should be determined
periodically to help orient and monitor treatment.
Quite - but I have seen and heard medical doctors
burst out laughing when I suggested this, and suggesting that I
had too high an impression of my own human value; I have had medical
doctors assure me I must feel thankful that persons of their extreme
eminence and merit were willing to let me see them for all of ten
minutes; and that a patient may have something sensible to say about
his or her own disease is something hardly compatible with what most
medical doctors I have seen believed about themselves.
Then again, I have had and seen some very good
medical doctors (a small minority, for good things and good human
subgroups: Post-exertional neuroimmune exhaustion is the hallmark
That is also what my ex and I concluded within a
year of having the disease: The most typical and strange thing is
that one has to pay back everything one has done that even mildly
exerts one afterwards, in remarkable contrast when one is healthy and
in his or her twenties, as we were.
I'd say "neuroimmune
exhaustion" requires definition, but I can myself no more say
than what I feel, and not what a good medical researcher could find,
and what I feel with this disease is exhaustion without end, only
relieved by periods of less exhaustion, and punctuated with periods
where all I can do is be in bed and have pain.
Distinguish primary symptom complexes formed by a disease
process from secondary effects of coping with the disease, such as
anxiety about finances. Determine the effects and burden of aggravators
and stress enhancers such as fast paced environments and exposure to
I agree, and most with the first sentence, since
the rest depends on quite a lot, such as spending time on a patient,
and on the patient's intelligence, outlook and state of knowledge. (And
in Holland, the Dutch state has decided that GPs should spend no more than
10 minutes per patient, on average, or the GP risks trouble with the
state's health authorities. There is "medical ethics" for you!)
But a central point is that when one is ill,
especially for a long time, and most especially if one is ill for a
long time while medical doctors keep denying one is, or at least
keep pooh-poohing one's complaints and therefore refusing to do any
research or provide any help, one naturally worries about
one's life, chances, and health.
In spite of its naturalness,
the DSM-5 worthies
want to make this a sufficient ground for psychiatric incarceration,
if needs be: If you worry about yourself or your child, and your
shrink or GP believes that you or your child are not ill, thinking
one is ill or one's child is and saying so to a nedical doctor will
make you "psychiatrically ill", from 2013
onwards, just as people in China were incarcerated and persecuted
for not being sufficiently laudatory of Chairman Mao's superhuman
qualities. Psychiatrists as the thought police! Willingly and proud
Determine total illness burden by assessing
symptom severity, interaction and overall impact. Consider all
aspects of the patient’s life – physical, occupational, educational,
social and personal activities of daily living.
I agree, but one problem in Holland is that the
minister has decided that everyone who is not a millionaire should
be dealt with by medical doctors within 10 or at most 20 minutes.
Another problem is that the medical profession let that happen
without serious protest. A third problem is that university
education has been made so easy to obtain entrance to and grants for
a university education,
at least for
the babyboomers generation, all on their express desires during The
Sixties, and all
effective from ca. 1970-2005, that almost anyone who was not a born idiot had
a decent chance of studying at university in Holland, and indeed gratuating in almost any
subject in this period of 35 years. (See my
Spiegeloog-columns.) The result is that I have seen medical
doctors as GPs who 35 year earlier wouldn't even have made it as
secretary in a small business, namely for evident lack of intelligence.
Then again, this is not the fault of the authors -
though it makes it much more difficult to find any morally
and intellectually decent medical help in
Holland than it was a few decades ago, while one pays something like
four times the premiums one did: Somebody must have profited
enormously from these changes, but those who profited were neither
the patients nor the GPs (except that these days it seems as if the
average IQ of GPs fell some 15-30 points - and while my readers may
doubt that, and while I don't know for certain that it is true, it sure does look as
if it is, just as there are hardly any more decent academics or real
intellectuals who are
younger than my 61 years, that is, persons whose IQ is at least 125
and who learned 5 foreign languages, mathematics, physics,
chemistry, biology, geography and history before entering
university, for as it is
and has been for four decades now, first year university students
in Holland usually
only "know" English, from TV, and can't even do elementary
arithmetic, while almost all the university courses have been halved
in time.) Back.
Patients who prioritize their activities may be able to do one
important activity by eliminating or severely reducing activities in
other aspects of their life.
Actually, this is what my ex and I found ourselves
very early in the disease: First, we can't do all or indeed most of
the things necessary to function as a healthy adult. Second, we often
could not do all or indeed most of the things necessary to
function on a tolerable level. Third, we often were effectively
reduced to doing at most one thing a day that requires exertion, and
had to try to make do with doing little or nothing about the many
things one cannot do well or at all with ME.
Also, as far as we could tell, we were forced
to this by our dysfunctional bodies, and besides it was common sense - which is what I think anyone
with real ME for some time must have found: You have to make
changes, pace yourself, and give up many exertions and pleasures, if
you want not to get much worse than you are.
periodically, it can help position the patient within the group, orient
the treatment program and monitor its effectiveness.
Actually, this concerns the usage by medical
doctors of what the authors call the International Symptom Scale,
and in this context it seems a sensible idea. Then again, I think
the International Symptom Scale is in the planning, but not yet
produced. And see the next point and remark.
A clinical diagnosis must be confirmed before a patient
can provide useful general knowledge about the disease. The data
obtained from patients allows controlled and meaningful observations
and suggests hypotheses to be tested and confirmed or refuted.
Perhaps, but one can't prevent people trying to
find out what ails them, and the more intelligent may often and
easily arrive at a probable medical diagnosis before seeing a medical
doctor, since I could do that while only having some knowledge of
anatomy, physiology, biochemistry, physics, and a printed copy of
the Dutch GPs medical standby called Codex Medicus, that has
all common and not too rare diseases in one book, with symptoms,
medicines and differential diagnoses.
So if I could do it before the internet, almost
anyone can do it with the internet - though my guess is also that at
most 1 in 20 will.
In any case: If one has sufficient time to talk
with one's patients, and is a good medical doctor, these two
presumed facts should rule
out most intentional deceptions. (And besides: living on a dole-level
income or worse, as I've been doing now since I am 17, i.e. the
last 44 years, is not precisely what one dreams about doing with
one's life and time. It is not as if by convincing one's doctors
that one has ME one will be rewarded by something widely desired by
Symptoms must not be viewed as a nominal checklist. The
International Consensus Criteria focus on symptom patterns, which
See my note [M52]: The ICC
indeed gives conceptual definitions, mostly but not all with
empirical handles, and that is the right way to do real science, which is
not about labeling and categorizing a domain, as the bright minds of
the APA seem to believe, if honest, but about coming to understand
the kinds of facts in the domain by guessing
those facts and defining
empirical distinctions and correlations with an eye on the good and
so far unrefuted theories.
What psychiatrists and the APA offer by way of
"theory" or "science" is none of these things, but is instead a
systematically confused set of labels of prejudices and constructs
to make money and bamboozle patients with.
Onset severity may be a good predictor of severity in
the chronic phase.
Or it may not be. I really don't know, but only
observe that my ME got a lot worse after being forced to have
insufficient sleep for a period of almost 4 years. And I doubt it
really is a linear sort of phenomenon as here suggested, with one
main factor, in the
The International Consensus Criteria provide a
framework for the diagnosis of ME that is consistent with the
patterns of pathophysiological dysfunction emerging from published
research findings and clinical experience.
Yes, I think it is, and I myself am willing to go
much further along the stated line: Any diagnosis of any ailment
whatsoever that is not "consistent with the
patterns of pathophysiological dysfunction emerging from published"
biomedical "research findings
and clinical experience" cannot be
science and must be some sort of pseudoscientific
quackery at best.
patterns interact dynamically because they are causally connected.
This has been formally addressed by some investigators who have used
well-established multivariate statistical techniques, such as common
factor or principal component analyses to identify symptom
constructs [121, 122].
This seems a bit confusedly expressed: I think the
patterns one can find in symptoms must have some rational
mathematical or causal connection with whatever produced them,
but it may not be the patterns that "interact
dynamically" but only the activities that the patterns are the symptoms
But I agree the difference is mostly one of
expression, and indeed I was myself rather amazed to find how poor
the statistical techniques and indeed the methodologies are that
were used in medical research I read up on, indeed especially in the hands of
I myself - who had hoped to teach methodology,
logic, or philosophy of science at some decent university - would
say ME is crying out loudly for factor analysis and multivariate
analysis, simply to establish what is significantly interrelated and
what is not.
Consistent with this
approach, the panel is developing an International Consensus Symptom
Scale (ICSS) that will build on these underlying interactions.
However a necessary first step in establishing a quantitative score
for any diagnostic instrument is the specification of measurable
factors that are most relevant to the illness. Establishing such
criteria was the primary objective of this work and we believe the
International Consensus Criteria will help clarify the unique
signature of ME.
This is again a very good idea, including the
naming, and not because I confuse science and propaganda, or because
the authors do, but because the psychiatrists, who insist, like
inquisitioners, that "it is all in the patients' mind" do in fact
not do real science but pseudoscience (and indeed these 26 medical
authors, may risk jail terms if society grows more
authoritarian and the "38.000 physician leaders" of the APA become
the willing executioners of an authoritarian state - which, as it
sounds from their own self-assigned
megalomanic title of "38.000 physician leaders", seems rather
likely they may become, if given the opportunity).
[M67] It is important to note that the current emphasis
must primarily remain a clinical assessment, with selection of
research subjects coming later. For this reason the panel is
developing Physicians’ Guidelines, which will include diagnostic
protocol based on the International Consensus Criteria and treatment
guidelines that reflect current knowledge.
Put otherwise: GPs must think for themselves, and
not follow psychiatric pronouncements blindly, or without good
biomedical evidence. A person who is ill with what seems to be ME,
very probably is really ill - when did many millions independently
develop the same notions about their illness, without any knowledge
of it, without there being an underlying causal process that works
the same in these many million cases?! - especially since the
diagnosis of ME is more or less a medical kiss of death since
decades, and since being in the dole is not something anybody who is healthy
likes to be, if only for financial and social and moral reasons. But most patients with ME for more than 2 or 5
years will end up in the dole.
Individuals meeting the International Consensus Criteria have
myalgic encephalomyelitis and should be removed from the Reeves
empirical criteria and the National Institute for Clinical
Excellence (NICE) criteria for chronic fatigue syndrome.
Quite so, and the reason is that ME is not
"chronic fatigue", and should not be presented as such, unless one
is a liar and a fraud, or else a major dumbo.
And yes, of course there are persons who try to
have an easy life and try to do so by getting sick pay while they
are not ill, or by defrauding society in another way. The main point
here are (1) that this does not happen by the millions, or there
would be no human society at all, and (2) only a small percentage of
anyone who claims ME has anything to gain by obtaining such a
diagnosis: One claims one has ME, as a patient, if one has no other
diagnosis and keeps feeling and being too miserable to lead
anything like a normal and healthy life.
These guidelines are designed specifically for use by the
primary care physician in the hope of improving rapid diagnosis and
treatment by first-line medical care providers.
Quite so, and an underlying point may need
repeating: GPs must think for themselves, and not follow psychiatric
pronouncements blindly, or without good biomedical evidence. A
person who is ill with what seems to be ME, very probably is really
ill - and further see [M67] and
This may result in the development of an additional short form
version that would build on the relationships linking symptoms to
formulate an abbreviated screening protocol. For the first time
clinical, paediatric and research applications are provided, which
will advance the understanding of myalgic encephalomyelitis and
enhance consistency of diagnoses internationally. The compulsory
critical criteria allow comparable data to be collected in various
locations and may assist in developing consistent biomarkers and
further insights into the mechanism and etiology of myalgic
Yes, but this is mostly on the level of hope and
future work, though I agree with the spirit and the plan.
Brief summary: Medical doctors should stand up
and reclaim their own territories from the APA and the psychiatrists,
and insist that real medical science is competent enough to take
care of its own and its patients' interests, and of diagnosing any
disease, and can do without obscurantists, posturers, or tricksters with
sort of wacky theological sounding diagnosis that they pretend is 'evidence
based science' because it makes them money, but is simply a kind of
based on nonsense, while fraud ever was easier than honest hard
3. Place of the ME:
International Consensus Criteria
Having come this far, one may ask what is the
place of this new paper? It seems to me a mostly good and readable
description of most of the symptoms that ailed my ex and me, in
illustration of which see the above remarks, and it also seems to me
- since this is not a paper that is directed at researchers, in the
first place, but at GPs and patients - that it is a lot easier to
read and score oneself by than the earlier CCC-papers, which were
good research papers, but also quite long, and not easy to read.
And here, to end my present treatment of the
paper, are professor Malcolm Hooper & Margaret Williams on the
subject, as found today on
Phoenix Rising and on
MEActionUK. I reproduce it as I found it, in full.
Psychiatry – again
Malcolm Hooper and
Margaret Williams 22nd July 2011
In her BMJ editorial in which she referred to
“myalgic encephalitis” instead of the correct term “myalgic
encephalomyelitis” (Ending the stalemate over CFS/ME: BMJ
2011:342:d3956), Fiona Godlee described the disagreement between
the biomedical and psychosocial schools of thought about ME as “an
unproductive standoff in which…all progress is being stifled by
increasingly aggressive intimidation of researchers”.
The “unproductive standoff” certainly existed
and may be said to be the result of 25 years of inflexible
arrogance by “overly powerful psychiatrists who hold key positions
in medicine, research, media gatekeeping and government
policy…suppressing the argument that ME may be biomedical rather
than psychiatric” (Let psychiatric and biomedical lobbies be heard
equally in CFS/ME research; Caroline Davis: BMJ 2011:343:d4544).
Following her editorial, Godlee published a
letter from Professor Peter White (Chief Principal Investigator of
the notorious PACE Trial) in which he was joined by Alastair
Miller (medical advisor to the charity Action for ME) and by
paediatrician Esther Crawley (renowned for her belief in the
Lightning Process in the management of ME) in which they decried
the need for adequate assessment of patients with ME as being “a
significant burden” on both patients and doctors.
When did careful assessment of sick people stop
being part of the practice of medicine, particularly when the
disorder in question is known to be both complex and chronic? The
answer seems to be that it was when Wessely School psychiatrists
and others who work for the insurance industry became the arbiters
of what constitutes disease or disability.
In their published letter, White et al use
inverted commas when referring to “symptoms” of ME such as
“ataxia” and “palpitations with cardiac arrhythmias” and “loss of
thermostatic stability”, denoting their dismissal of such symptoms
as genuine components of ME; indeed, White et al go on to refer to
the assessment of “too many symptoms of dubious validity”.
Godlee also afforded a platform for psychiatrist
Alastair Santhouse (who, with Esther Crawley, was a member of the
Guideline Development Group that produced the NICE Clinical
Guideline on “CFS”) to reject valid criticisms of the PACE Trial
(“the sound rebuttal by the Medical Research Council and the
Lancet to allegations that the PACE trial was in some way improper
should be proof enough” – BMJ 2011:343:d4550).
However, a positive step has just been taken
towards resolving the “standoff”.
Not only were researchers from 13 countries
including the UK not intimidated by their patients with ME, they
have now produced International Consensus Criteria specifically
for ME (ME: International Consensus Criteria; Bruce M Carruthers
et al; Journal of Internal Medicine: Accepted Article:
Between them, the international panel have about
400 years of both clinical and teaching experience of ME; they
have authored hundreds of peer-reviewed publications and they have
diagnosed or treated approximately 50,000 (fifty thousand) ME
The abstract is clear: “In view of more recent
research and clinical experience that strongly point to widespread
inflammation and multisystemic neuropathology, it is more
appropriate and correct to use the term ‘myalgic
encephalomyelitis’ (ME) because it indicates an underlying
pathophysiology. It is also consistent with the neurological
classification of ME in the World Health Organisation’s
International Classification of Diseases (ICD G93.3)”.
The expert authors explain that the purpose of
developing the latest international criteria was to base them on
current knowledge of ME that reflects the complex symptomatology
and they have produced guidelines which “promote optimal
recognition of ME by primary care physicians and other health care
The authors point out that ME “is a complex
disease involving profound dysregulation of the central nervous
system and immune system, dysfunction of cellular energy
metabolism and ion transport, and cardiovascular abnormalities”.
They note that the use of overly inclusive
criteria in research has included people who do not have ME and
that this leads to “biased research findings, inappropriate
treatments, and waste(d) scarce research funds”.
The International Consensus Criteria are soundly
supported by research and are based on 123 cited references; the
authors note that broadly based studies show a lack of objective
findings and state that “the primary goal of this consensus report
is to establish a more selective set of clinical criteria that
would identify patients who have neuroimmune exhaustion with a
pathological low threshold of fatigability and symptom flare in
response to exertion”.
The authors are explicit: “Pain and fatigue are
crucial bioalarm signals that instruct patients to modify what
they are doing in order to protect the body and prevent further
damage. Post-exertional neuroimmune exhaustion is part of the
body’s global protection response and is associated with
dysfunction in the regulatory balance within and between the
nervous, immune and endocrine systems, and cellular metabolism and
The panel members consider the neurological
impairments including structural and functional abnormalities seen
on neuroimaging studies in ME; they address the immune impairments
including decreased natural killer cell signalling and function;
abnormal growth factor profiles; decreased neutrophil respiratory
bursts with a shift towards a Th2 profile; chronic immune
activation with increases in inflammatory cytokines,
pro-inflammatory alleles, chemokines and T lymphocytes, and
dysregulation of the antiviral ribonucelase L (RNaseL) pathway.
They consider the evidence of profound energy
impairment and poor cardiac performance and they note the possible
involvement of altered control and reduced cortisol production
during and after exercise.
They note the evidence of abnormal blood
pressure regulation and the measurable vascular abnormalities that
suggest the brain is not receiving sufficient circulating blood
volume when the patient is upright and that this is intensified
when standing in one place such as in a grocery checkout line.
The authors discuss the clinical application of
their criteria, as well as paediatric considerations and research
The authors conclude that they “believe the
International Consensus Criteria will help clarify the unique
signature of ME” and they state unambiguously that “individuals
meeting the International Consensus Criteria have myalgic
encephalomyelitis and should be removed from the Reeves empirical
criteria and the National Institute for (Health and) Clinical
Excellence (NICE) criteria for chronic fatigue syndrome”.
This approach could not be more different from
that used by Professor White in the PACE Trial, in which he used
the intentionally broad Oxford criteria that do not discriminate
between ME and chronic medically unexplained fatigue.
The adoption of these international diagnostic
criteria would ensure that future studies are investigating people
with well-defined ME and would thus satisfy one of the biggest
complaints from within the ME community (ie. that previous studies
have not been looking at a homogeneous group of ME patients). It
would certainly be a positive step towards resolving the standoff
between science and psychiatry.
I quite agree, and repeat that, at least for
English readers, both patients and GPs, the International Consensus
Criteria will be a lot easier to read, understand and apply than the
earlier CCC-criterions that, while being good as a foundation for
scientific biomedical research, were difficult to work through for
patients and GPs.
Finally, the whole article is also available here: