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Nederlog
July 23, 2011           

me+ME: Good news - International Consensus Criteria for ME published - 2

 

   There was only one catch and that was the DSM-5, which specified that a concern for one's health in the face of illness was the process of an irrational mind. One was ill with ME and could be helped. All one had to do was ask the health-authorities for help; and as soon as one did, one would be called crazy and would not be entitled to help. One would be declared crazy if one said one was ill with ME and needed help, and would be declared sane if one didn't, but if one were declared sane one would get no help while being ill. If one asked for help while ill one was declared crazy; but if one didn't ask for help one was considered sane and denied help for that reason.
   -- After Joseph Heller

Sections

1. Introduction
2. My notes to ME: International Consensus Criteria
3. Place of the ME: International Consensus Criteria


1. Introduction

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 this case.

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 directory.

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 Consensus Criteria

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 Encephalitis".

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.     Back.


[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.     Back.


[M3] 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 in medicine.     Back.


[M4] 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 psychiatry".     Back.


[M5] 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 type process.

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: Delphi method.     Back.


[M6] 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.     Back.


[M7] 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 abnormalities [12-14].

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.     Back.


[M8] The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomology.

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 real and not "all in the mind"?!     Back.


[M9] 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 [17] to 2.54% using the Reeves empirical criteria [16].

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 medical symptoms.
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 goes...".)     Back.


[M10] Jason et al. [18] 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).     Back.


[M11]  Patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments, and waste scarce research funds [19].

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.     Back.


[M12] 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 quite unwise.     Back.


[M13] ... 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.      Back.


[M15] Fatigue 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 several days.

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.     Back.


[M16] (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 original.)     Back.


[M17] 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.     Back.


[M18]  Characteristics 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.     Back.


[M19] 4. 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.     Back.


[M20] 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).     Back.


[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 times, in 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 optimistic about 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 + Why my family was in The Dutch Resistance  in WW II.)     Back.


[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).     Back.


[M23] 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
    Dr. Johnson

     Back.


[M24] 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.     Back.


[M25] Motor: e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

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.     Back.


[M26] 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.     Back.


[M27] 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.)     Back.


[M28] 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:  PERSECUTION OF 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.     Back.


[M29] 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.    Back.


[M30]  Genitourinary:e.g.urinary urgency or frequency,nocturia

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.)     Back.


[M31] orthostatic intolerance, neurally mediated hypotension, postural orthostatic tachycardia syndrome, palpitations with or without cardiac arrhythmias, light-headedness/dizziness

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.)     Back.


[M32] 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 disaease.

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 while.     Back.


[M33] 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 recede.

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.     Back.


[M34] 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.     Back.


[M35] Difficulty 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.     Back.


[M36] low 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.     Back.


[M37] 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.)     Back.


[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, at least; 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.      Back.


[M39] A study of patients from a twin registry suggested that environmental factors may outweigh any genetic predisposition in broad based patient populations [39].

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.     Back.


[M40] In a study of the Reeves empirical criteria [16], Jason et al [18] 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 ME.

This may be so, but then "CFS" and "ME" have multiple definitions, and are understood in quite a few different senses.      Back.


[M41] “Malaise – a vague feeling of discomfort or fatigue” [42] 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 medically unexplained 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.     Back.


[M42] 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 [64].

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.     Back.


[M43] Neuroimaging studies report irreversible punctuate lesions [66], an approximate 10% reduction in gray matter volume [67, 68], hypoperfusion [69-74] and brain stem hypometabolism [1].

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.     Back.


[M44] 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).     Back.


[M45] 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.     Back.


[M46] 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 healthy.     Back.


[M47] 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, 104].

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 ignorance, 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.)     Back.


[M48] 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 [14, 117].

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.     Back.


[M49] Low blood pressure and exaggerated diurnal variation may be due to abnormal blood pressure regulation [118].

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 unlikely.     Back.


[M50] 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 medically, and/or 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.)     Back.


[M51] Significant reduction in heart rate variability during sleep is associated with poor sleep quality and suggests a pervasive state of nocturnal sympathetic hypervigilance [120].

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.     Back.


[M52] 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 2013!).      Back.


[M53] 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 Hillary Johnson's "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.     Back.


[M54] 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.     Back.


[M55] 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 beings are rare).     Back.


[M56]  Criterial subgroups: Post-exertional neuroimmune exhaustion is the hallmark feature.

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.     Back.


[M57] 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 toxins.

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 of it!     Back.


[M58] 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.


[M59] 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.     Back.


[M60] When used 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.     Back.


[M61] 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 healthy persons.)     Back.


[M62]  Reliability: Symptoms must not be viewed as a nominal checklist. The International Consensus Criteria focus on symptom patterns, which increase reliability.

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 theories that explain 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.     Back.


[M63] 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 general case.     Back.


[M64] 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 real medical science and must be some sort of pseudoscientific quackery at best.     Back.


[M65] Symptom 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 of.

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 pseudoscientific psychiatrists.

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.     Back.


[M66] 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).     Back.


[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.     Back.


[M68]  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.     Back.


[M69] 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 [M68].     Back.


[M70] 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 encephalomyelitis.

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 some sort of wacky theological sounding diagnosis that they pretend is 'evidence based science' because it makes them money, but is simply a kind of medicalese labelling based on nonsense, while fraud ever was easier than honest hard work.     Back.


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.


Science versus 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: doi:10.1111/j.1365-2796.2011.02428.x).

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 patients.

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 providers”.

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 ion transport”.

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 applications.

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:


P.S. Corrections, if any are necessary, have to be made later.
-- July 24, 2011: Made several tens of mostly small corrections and added some links.
-- July 26, 2011: Corrected more typos and added some links. For more see
-
Good news - International Consensus Criteria for ME published-1 (Jul 22)
- Good news - International Consensus Criteria for ME published-3  (Jul 24)
- Good news about Dr Myhill + On versions of CCC and ICCC (Jul 26)





As to ME/CFS (that I prefer to call ME):


1.  Anthony Komaroff Ten discoveries about the biology of CFS (pdf)
2.  Malcolm Hooper THE MENTAL HEALTH MOVEMENT: 
PERSECUTION OF PATIENTS?
3.  Hillary Johnson The Why
4.  Consensus of M.D.s Canadian Consensus Government Report on ME (pdf)
5.   Eleanor Stein Clinical Guidelines for Psychiatrists (pdf)
6.  William Clifford The Ethics of Belief
7.  Paul Lutus

Is Psychology a Science?

8.  Malcolm Hooper Magical Medicine (pdf)
9.
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
10.
 Maarten Maartensz Myalgic Encephalomyelitis

Short descriptions of the above:                

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:

7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam with ME.
10. The directory on my site about ME.



See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.
 


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