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Nederlog
Aug 27, 2011           

me+ME: PEM-ed



Unabbreviated "PEM" = "Post Exertional Malaise", which is what I have since yesterday, after doing too much the day before yesterday.

It's one of the symptoms of ME my ex and I found typical for what we had, that started out as EBV (Epstein Barr Virus) in January 1979, which did not ever stop, as far as we could tell, though it resolved itself partially as flues etc. do.

But I kept sweating profusely especially at night; she kept having diarrhea and migraines; we both could do physically far less than before, and if we tried to do more, which we often had to, because it was our first year in university (both of us in psychology, me also in philosophy) and we had to score the requisite amount of exams passed to remain entitled to receive study loans and be a student, we often got considerably worse, for quite a long time also, due to having done a small fraction of the physical exertion we were capable of before falling ill, and without such exertion when healthy having any undue effects for days or weeks after it.

It quickly transpired for us, as a matter of principle of the disease, or so it seemed to us, that - as we expressed it - "we always have to pay back if we have to do too much", namely in terms of more pain and a higher degree of illness in terms of our other regular symptoms (more sweating, more diarrhea, more headaches) and even less energy, for that is the other thing that clearly belonged for both of us to the disease: Always feeling exhausted.

It was only ten years later that we found out about ME - and also that none of the several tens of medical doctors we had seen had as much as mentioned it, which - since it also turns out that already in 1980 I had written out the symptoms of ME very clearly, without knowing it was that - means that none of these doctors knew what they either should have known or should have found, albeit not, then, in terms of Canadian Common Criterions (<- here linked in a 2005 clear briefer version) that date from 2003.

But they probably would have found it if they had consulted the World Health Organization's classification of medical diseases, where it was to be found since 1969, mostly due to dr. Melvin Ramsay's efforts (about which there lately appeared a fairly good piece on Phoenix Rising, except that Ramsay's name is ill spelled at quite a few places - which incidentally is an ME-symptom, I mean very frequent misspellings), or if they had done a decent medical library search (which around 1980 was, I agree, a lot more time consuming than these days).

If one of the several tens of doctors we saw - all well-paid for their efforts!  - would have searched, they might well have found something like what follows below, and namely because I had written down almost all of this, indeed except for tinnitus and a part of the "cerebral symptoms" below, and handed that to quite a few medical doctors. Also, as regards "cerebral symptoms" my ex and I held that the cognitive problems were probably result of the exhaustion (which I now don't think, at least not for the most part) while it was or ought to be obvious, we thought, that one would feel emotionally distracted about remaining ill, not getting any help, while clearly one had no personal interest whatsoever to pretend to the symptoms we did while being students: No pay for ill students!

Nevertheless, we were told it was "psychosomatic" by most doctors we saw, which already then a very fashionable "diagnosis" in Holland, for many things many patients complaint about, that the doctor did not know a medical explanation of: If a doctor hasn't heard of a disease, especially if he or she can't find it quickly when looking in his medical books, he or she calls it "psychosomatic", we learned, especially - we noticed, both having IQs over 140 - those medical doctors who didn't seem especially intelligent to start with.

Clearly, this also helps save face, and protects both the authority and the ego of medical doctors, who then - especially if not of strong character themselves - avoid saying the honest, rational, and indeed scientific "I don't know what ails you" - and rather bullshit the patient, for it is bullshit to claim a positive psychological diagnosis because one has not seen evidence for a positive medical diagnosis one knows.

Then again we got that perfectly rational and morally decent honest admission of ignorance as well, in about 1/3rd of the medical doctors we saw between 1979 and 1983 or so, indeed usually specialists rather than GPs.

After 1982/1983 we gave mostly up on Dutch medical doctors, especially because of (1) the physical trouble to go there, (2) followed usually by "it is psychosomatic" - by someone we felt lied (since none of those who said so had any special knowledhe of us) rather than state his or her ignorance honestly, and (3) because of the costs, since being students with a special insurance we did not get all our costs back, and also we couldn't get all tests done we thought might help finding something.

The following is from a good Danish site:


Definition and criteria for ME

The definition below is taken from A. Melvin Ramsay's book: Myalgic Encephalomyelitis and Postviral Fatigue States: The saga of Royal Free disease (London, 2nd ed. 1988). Republished by July 2005 by The ME Association (UK).

Many thanks to Mary Schweitzer, Ph.D. for selecting the quotations and for explaining in plain English some of the medical terms (in brackets).


Onset

The onset of the disease is similar to those described in the various recorded outbreaks. Thus it may be sudden and without apparent cause, as in cases where the first intimation of illness is an alarming attack of acute vertigo, but usually there is a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract with nausea and/or vomiting.

Instead of an uneventful recovery the patient is dogged by: Profound rapid fatigability of muscles and brain accompanied by a medley of symptoms such as:

  • Headache,
  • Giddiness,
  • Muscle pain, cramps, or twitchings,
  • Muscle tenderness and weakness,
  • Paraesthesiae [numbness or tingling in the extremeties],
  • Frequency of micturition [urination],
  • Blurred vision and/or diplopia [double vision],
  • Hyperacusis [sensitivity to noise] (sometimes alternating with deafness or normal hearing),
  • Tinnitus (constant sound in the ears), and a
  • General sense of "feeling awful."

Some patients report the occurrence of fainting attacks relieved by a small meal or just eating a biscuit; these attacks were the result of hypoglycaemia ...

All cases run a low-grade pyrexia [fever], seldom exceeding 100F (c. 38C) and usually subsiding within a week.

A very thorough examination of the central nervous system should be made and this should be accompanied by a careful estimation of muscle power, especially in the limbs and neck.

A search for enlarged lymph nodes should never be omitted.

If muscle power is found to be satisfactory, a re-examination should be made after exercise; a walk of half a mile is sufficient, as very few ME cases can make more.

---------------------------------

Once the syndrome is fully established the patient presents a multiplicity of symptoms which can most conveniently be described in two groups.

  1. Muscle phenomena
    • [Fatiguability:] Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME or mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.
    • [Pain:] In severe cases of ME, muscle spasms and twitchings are a prominent feature and give rise to swollen bands of tissue which are acutely tender. In less severe cases, muscle tenderness may not be so readily elicited but careful palpation of the trapezii and gastrocnemii (the muscle groups most commonly involved) with the tip of the forefinger should enable the examiner to detect minute foci or exquisite tenderness ...
    • [Clumsiness:] In the aftermath of the disease patients frequently fumble with relatively simple manoevres such as turning a key in a lock or taking the cork of a bottle.
    • [Circulatory impairment:] Most cases of ME complain of Cold extremities and Hypersensitivity to climactic change ... Ashen-grey facial pallor, some twenty or thirty minutes before the patient complains of feeling ill.

  2. Cerebral dysfunction

    The cardinal features [are]:

    • Impairment of memory,
    • Impairment of powers of concentration and
    • Emotional lability

    [Other] common deviations from normal cerebral function:

    • Failure to recall recent or past events,
    • Difficulty in completing a line of thought ...
    • Becoming tongue-tied in the middle of a sentence, and a
    • Strong inclination to use wrong words, saying "door" when they mean "table" or "hot" when they mean "cold" ...
    • Complete inability to comprehend a paragraph even after re-reading it...
    • Bouts of uncontrollable weeping [may be present] ...
    • Alterations of sleep rhythm or vivid dreams, or both ...

    [Accompanying] features [that] can only be attributed to involvement of the autonomic nervous system:

    • Frequency of micturition (urination) and
    • Hyperacusis (hypersensitivity to noise)...
    • Episodic sweating and
    • Orthostatic tachycardia ...

Variability and fluctuation of both symptoms and physical findings in the course of a day is a constant feature in the clinical picture of myalgic encephalomyelitis.


Incidentally, the site this comes from - I repeat:

is a good site with quite a lot of information in English, and also in Danish and Norwegian (that I read easily, though I prefer English if there is a choice). Originally, the site is Danish.

One reason to quote the above is that I hadn't found it myself earlier (it's been there a long time) and that I wanted to make a point about PEM, since that has been renamed in the new

that appeared last month.

There what I call PEM, and indeed was called PEM in the Canada Consensus Criteria (CCC) from 2003, of which a considerable subset of authors also contributed to the ICC, is styled PENE, as follows (with "Compulsory" meaning one must have this to qualify as having ME, and a link added by me):


"A. Post-Exertional Neuroimmune Exhaustion (PENE pen'-e) Compulsory

This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions. 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 collaps.

  2. Post-exertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms.

  3. Post-exertional exhaustion may occur immediately after activity or be delayed by hours or days.

  4. Recovery period is prolonged, usually taking 24 hours or longer. A relapse can last days, weeks or longer.

  5. Low treshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level."


One thing I wanted to remark is that this is formulated as involving a causal hypothesis, namely Neuroimmune Exhaustion, rather than a symptom, namely Malaise (the hypothesis being that it is due to malfunctions  in the neuroimmune regions).

This distinction between hypothesis and symptom - between theoretical prediction and empirical symptom - I also treated, in a somewhat different context, in

I totally qualify as having ME/PENE in terms of the above (and indeed have moderate to severe ME according to the definitions in the International Consensus Criteria for Myalgic Encephalomyelitis and while I am myself a bit hesitant about composites like "neuro-immune" (not to speak of the DSM-5 beloved "biopsychophysical" and such) what I particularly like is the "Exhaustion" for that is how it feels - not "Fatigue"; not "Malaise" : EXHAUSTION. (*)

So I consider this an improvement in terminology, indeed also because now it does carry a hypothesis (unlike postmodern psychiatry, that only offers "syndromes of symptoms" in many cases, that attribute, in effect, a psychiatric disorder to one, without any hypothesis other than the presence of x of y from a list of symtoms, and also usually without anything in the way of a rational scientific explanation).

Anyway... I am and was PEMed or PENEd, today and yesterday, for which reason I may not write a Nederlog tomorrow, if it continues, and which leads me to a last observation in the context of

As it happens, I did too much walking and standing two days ago, and this may be connected to the fact that I found one feels a bit less miserable when using B12.

At least: I do, and others reported the same, and my gloss on that is that this may be a bit misleading, in in that it seems to promise one can do more than is wise, or than one would do without B12-supplements.


Note

(*) Here are two Wikipedia links that give some background to the term "neuro-immune":

Especially as regards the latter I am quite skeptical, for two reasons.

First, it gets definied in the first statement of the Wikipedia like so:

Psychoneuroimmunology (PNI) is the study of the interaction between psychological processes and the nervous and immune systems of the human body

For me, that very strongly and totally unscientifically and irratonally  suggests that there are "psychological processes" - aka a soul, in theology - next to the activities of the "nervous and immune systems of the human body", for otherwise it could not "interact" with the latter (as it would be a subset of it).

That's total bullshit for me, that goes completely against Ockham's Razor. Why not assume then (also, or as a supplement, with the Dominican doctors of the Church ca. 1250 AD) that there are devils that cause the pains real medical science can't explain? That or who torture one's psyche, subconsciously, of course? And that the Holy Mother Church can heal, by incantations to Real Bits of The Cross, and payments to the priests who do the chants?

NB how something like PNI could or should be defined scientifically but is not:

"the study of how the - physical, biochemical, electrical - states of the nervous system produce states of the nervous system that are consciously experienced".

That last formulation of mine is in the tradition of rational science, and does not involve the hypothesis of a psyche or soul next to and interacting with a body, as theologians, warlocks, witches, shamans and many psychiatrists claim - whereas the Wikipedia formulation invites all the obscurantist antics, lies and posturings of the mentioned groups.

Second, I am quite insistent here that I am an expert - see e.g. my treatment of Leibniz -  on the issue of whether or not there is a soul or psyche to interact with a body, and I know of very few medical doctors who are able to do as little as to write clearly about what is involved, and without committing themselves by sloppy habits of formulating to major intellectual bloopers as quoted - if indeed they are not consciously bullshitting, as I insist the APA is doing, for perfectly understandable financial reasons.

At this point, frauds like Wessely will start to accuse one of what they are guilty of: Confusing the terminological issues.

No, I am not: Most medical doctors - nearly all of them, and for good reason: ars levis, via brevis - know fuck all of philosophy or indeed psychology, or if they do it nearly always turns out to be semi-popular bullshit, while they don't know philosophy of science and logic, and rarely read any decent philosophical classic, such as the one that follows:

If there is a solution of "the mind-body" problem, then all of psychiatry, to this day, has succeeded in not giving it, while dishonestly pretending it held the key. (See the items: Brain, Consciousness, Experience, Mind, Other Minds, Psychology, and indeed Theory in my Philosophical Dictionary, and C.D. Broad's "The Mind and Its Place in Nature" for an excellent book about it - and the last link has good excerpts, but not all of the text).

On the other hand - I am open to suggestions as are implied by "neuroimmune", namely that the hypothalamus, pituitary gland or adrenals are involved, which also ought to be testable in principle, and indeed by real physical science rather than by psychobogosity.

 
P.S. Corrections, if any are necessary, have to be made later.


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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