March 13, 2013

On my ME/CFS: Two remarks for researchers
"Gregory (Scotland Yard detective): "Is there any other point to which you would wish to draw my attention?"
Holmes: "To the curious incident of the dog in the night-time."
Gregory: "The dog did nothing in the night-time."
Holmes: "That was the curious incident."
-- A.C. Doyle, "Silver Blaze


1. "The curious incident of the dog at night-time"
2.  A prevalence of auto-immune diseases
About ME/CFS


In a way, this continues
of three days ago, namely to stress to make two points one of which I mentioned, and another of which I then forgot.

Both are mostly intended for serious medical researchers who may read this, since they seem to me important clues that may point to something that medical specialists might understand.

1. "The curious incident of the dog at night-time"

In several ways, what hit my ex-wife and me in January 1979 was "classical Myalgic Encephalomyelitis", which I write the way I did because at the time this was admitted as a real disease, and the sick and sadistic psychiatric lie [1] that it is "Chronic Fatigue Syndrome" had not yet been invented: It started as a serious bout of Epstein-Barr (aka Pfeiffer's Disease, mononucleosis, or kissing disease) for both of us, and it also seemed as if it never fully went away for both of us.

As I explained - briefly and partially - in my
I do believe it is considerably more likely that the symptoms of ME/CFS have several explanations rather than a single one.

In any case, both my ex and I belong to the groups (1) whose symptoms fit the Canada Criterions, and (2) who started the disease with chronic
Epstein-Barr and my main reasons to insist on this is that it seems relevant to me.

What I call "The curious incident of the dog at night-time" was described in
A bit more about my mB12 protocol in these terms:

The most striking thing on balance, because it is wholly unlike my experiences since I fell ill with ME/CFS in January 1979, is that I have not gotten worse ME/CFS since May-June 2012, in spite of having consistently slept far too little since then because of sore eyes (that have improved some since November 2012, but still are troublesome).

That my ME/CFS symptoms did not get a lot worse with too little sleep, as has been the case ever since 1979, I can only explain rationally by the intervening factor of - especially - a large amount of supplementary B12, since March 2012, or earlier, though not earlier than 2010.
And I added this in a note:
As I said, (1) I did not take any supplements from August till November, but (2) my B12 levels in my blood during that period also were abnormally high, if not as high as the first time they were measured, in June. Since (3) I did not sleep well or enough at all from August till November and (4) I did not collapse with worse ME/CFS, it would seem the main relevant factor for this to me rather amazing outcome, is the B12 I took, when I did, which was 5000 mcg mB12 and 3000 mcg aB12 from March till July 20120, mostly but not always daily.
My point is simply this: I have nearly 35 years of experience with this disease, and two very consistent empirical findings, very often repeated, also long before either my ex or myself knew about ME at all, which only happened in 1989, after 10 years, the existence of which disease, incidentally, was also consistently missed by tens of medical doctors who were properly paid by us during these 10 years, were that (1) we had - as we expressed it often - "to pay back after the fact for any exertion we made" [2], of which there were many, for we both fell ill in the first year of out university study (thereby showing we had no social or psychological reason to malinger, stressed by the fact that we also, eventually, both got a M.A. degree in psychology, after many exertions), and that (2) an almost certain condition to make our symptoms worse was not enough sleep, which indeed made my M.E. much more serious from 1988-1991 onwards, when I suffered from years of far too little sleep, because of neighboring cafés and drugs-shops that the municipal police allowed to make great amounts of noise till between 2 and 3 o'clock at night.

This really is the first time - of several periods this happened to me since falling ill on 1.1.1979 - that what are evidently periods of sleeping far too little [3]
were not followed by a serious increase in my symptoms, such as more exhaustion, more pain, and less energy.

So this is quite striking: Not to have more ME/CFS-problems after having a long period without sufficient sleep, which has been the case for me ever since 1.1.1979, quite consistently also.

Also, I have had quite a lot of these periods for several different reasons, one important subset of which is that once I slept less with ME/CFS, I usually get more pain in - especially - the muscles of my arms and legs, which has been a constant symptom for me from the start of the disease, that also led to my having received the alternative diagnosis of F.M., and the extra pain makes me sleep less, thus setting up a vicious circle that is hard to break out of. [4]

So I really know what this is like, and what this covaries and interdepends with, and the only thing that can conceivably explain this quite striking fact in a rational fashion is that the one thing that differed, while everything else was the same as it has been for at least 10 years, was that I had taken a lot of B12, that also was evidently present in very large supply in my blood, both in June 2012, and in October 2012.

2. A prevalence of auto-immune diseases

I had
Epstein-Barr from 1979 till 1989, according to doctors of medicine that I saw, that is, if they did not say that they did not know what ailed my ex or me  (which I find quite acceptable) and if they did not say that - since they did not know it - "it must be psychosomatic" (which I find quite unacceptable, the more so since I have read meanwhile a lot about ME/CFS and about psychiatry).

In 1989 I was first medically diagnosed with Myalgic Encephalomyelitis / Fibromyalgia, and since then twice more by other medical doctors, who either knew me fairly well (which helps a lot if you are judging a man's illness, and his honesty, personal integrity and level of education and intelligence) or knew a lot about ME/CFS.

In Holland, where I live, it has been fashionable, very probably for financial reasons, since psychiatrists and clinical psychologists desire patients, and health insurances and state organs desire grounds to deny patients medical help and benefits, to treat patients with ME/CFS as if they are insane, lying, malingering, or hysteric (usually in euphemistic terms, but with the same legal effects: while you are really ill, you are really denied any help with your illness).

The main reasons this is possible are that the psychiatrists and clinical psychologists are scientifically incompetent or lie from personal interest (any patient they can "cure" with the miracle cure called "cognitive behavioral therapry" pays them between 100 and 200 dollars an hour); that they are sufficiently impertinent, immoral, dishonested and not afraid of being found out or punished, to be able to claim that what is not known to them or cannot be found in presently existing medical handbooks with a certain-sure medical diagnosis "must be a psychiatric (co-)morbidity" [5]; and that there is no known medical explanation and cause of ME/CFS.

It follows - among other things - that ME/CFS might well be an auto-immune disease, of which there are a lot, as the last link will show you, most of which also have the property that
there is no known medical explanation or cause for these diseases (making people who suffer from these diseases easy victims for psychiatrists, as soon as the DSM-5 can be abused to that end).

It so happens that I have been diagnosed last year (2012) with at least two
auto-immune diseases, namely Dupuyteren's Contracture and Sjoegren's Syndrome, in my case especially manifested by keratoconjunctivitis sicca.

Both are
auto-immune diseases - of unknown etiology, except that Sjoegren's Syndrome is more common in people also diagnosed with ME/CFS than in the general population.

And while this does not strike me as much as the finding reported in section 1 it is a noteworthy coincidence: I have now at least two
auto-immune diseases, of which at least one is correlated with ME/CFS, that itself may be an auto-immune disease.

I do not know what to make of this, nor what to make of the finding that I have not collapsed with more serious ME/CFS after not sleeping well for months (in September/October from 3 1/2 - 4 1/2 hours per night), as I have done many times, but then always without having lots of B12 in my blood.

But it may help good medical researchers getting ideas, and that is why I wrote this Nederlog about it.

[1] That is what I think it is, and - also having academic degrees in psychology and philosophy - I certainly have the right to say so: Whoever claimed, in whatever capacity, as many have done, that my ex and myself, and - literally - millions of others with the same symptoms as we had, are malingerers, liars, hysterics, parasites, or insane, rather than explicitly reserving such qualifications to at most a few per cent of millions, who live on  minimal incomes while being denied help end while being discriminated for having the bad luck of having a disease with an unknown explanation and no known effective treatiment, is a sick sadist in my opinion, and namely because I cannot imagine another better motive for saying such things - although I admit I may also be dealing with a professional liar, bullshitter and deceiver who works as a PR-consultant, as happens a lot these days, especially in psychiatry, who may be less moved by sadism than by greed, egoism and a psychopathic lack of conscience. 
[2] Known in the ME/CFS literature as "PEM" (Post-exertional malaise), something I only learned about in 2003.
[3] I normally need around 8 hours of sleep each 24 hours, to function without extra problems of some kind, and also did so before I fell ill.
[4] Fibromyalgia, a disease like ME/CFS, also in its having no known explanation, and kept apart from ME/CFS, if this happens at all, on the basis of muscular pains that are a dominant symptom in fibromyalgia.
[5] Again a sick trick to try to assure psychiatrists and clinical psychologists keep having paying patients.

About ME/CFS (that I prefer to call M.E.: The "/CFS" is added to facilitate search machines) which is a disease I have since 1.1.1979:
1. Anthony Komaroff

Ten discoveries about the biology of CFS(pdf)

3. Hillary Johnson

The Why  (currently not available)

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2003)
5. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf - version 2011)
6. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

7. William Clifford The Ethics of Belief
8. Malcolm Hooper Magical Medicine (pdf)
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)

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