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Nederlog

February 6, 2013

ME/CFS: Several causes - many confusions
Sections
Introduction   
1.
ME/CFS: Several causes - many confusions
About ME/CFS


Introduction:

The previous Nederlog was about part 1 of The Trap. Yesterday there was no Nederlog since I can only do so much - not much at all - with my health and the state of my eyes, but I intend to write more about The Trap, and probably also about some other documentaries by
Adam Curtis, such as "The Century of Self".

Meanwhile, something else that I had intended to write about anyway, since I have been always of the school that there are - most probably - several valid causal explanations for the symptoms of ME/CFS.

1.  ME/CFS: Several causes - many confusions

It would be nice if the things one wants to see explained but does not know the explanation of had a single cause and a single explanation. In simple cases this is so, but even then finding the causal explanation may be very difficult and take a long time.

My ex-wife and I fell ill in January 1979 with EBV while first-year students in the University of Amsterdam, and we did not know of Myalgic Encephalomyelitis until 1989, when I heard of it by accident, on the BBC World Service.

In the first ten years we were offered several possible diagnoses, varying from Boeck's disease (sarcoidosis) to "it is psychosomatic, for we can't find anything", but none looked really plausible to us, since it had in our case clearly started with a serious bout of
EBV, the symptoms of which then for the most part refused to disappear, although we were not as miserable as we had been the first week or ten days of EBV.

One problem - not just for diseases - is that real facts may have several possible causes and and usually have several possible explanations before there is any idea about possible causes that are testable and accord with science-as-is.

I decided to make a series of six simple images to outline the problem, but as it happens I also today found a working video link to dr. Ian Lipkin explaining the result of the research he and 13 others, including doctors Mikovits, Ruscetti and Alter did, that settled one of the causal explanations for ME/CFS pretty definitely in a negative fashion:
This is nearly an hour of video, but you'll find Dr Lipkin addressing the theme of the symptoms of ME/CFS having several possible causes, that are all effective for a sub-group who show these symptoms, but not effective for other sub-groups with the same or similar symptoms, around 18 minutes from the beginning, followed by a brief statement by Dr Mikovits to the effect that XMRV is no longer a scientifically tenable hypothesis.

LipkinEtAlPressConference
Clicking the image leads to 17 min 16 seconds into the video with drs Lipkin, Alter and Mikovits

I had heard but not seen this - and note this dates back to last year, and my own view, at that time, is here:
Now to the problem that real facts may have several possible causes and and usually have several possible explanations before there is any idea about possible causes that are testable and accord with science-as-is:

HypsEtc01


"Problematic facts" may be any kind: "What causes the tides?", "What causes magnetism?", "Why do I feel miserable and keep having night sweats for months now?" and so on.

HypsEtc02

A causal explanation of problematic facts here will be understood to be a set of statements from which statements describing the facts follow by deductive logic, while the set of statements - aka theory - is logically tenable and empiricaly testable.

HypsEtc03

In any case, the same class of problematic facts can be logically explained by very many different theories (of various kinds, qualities, motivations etc.) and in many cases, also in real science, there are various different theories to account for the same class of facts.

HypsEtc04

Then for theories that interest people outside science - diseases, the existence of the universe, evolution, economic exploitation and so on - not only scientists are interested in finding explanations, but interest groups of many kinds may be involved, for various reasons,  and indeed such interests groups may also speak in the name of science. Also, they may not, and try to settle things on religious, moral, political or financial grounds.

HypsEtc05

The result is often that the more a class of facts is of concern to large or powerful classes of persons, the more conflicting hypothetical explanations there arise for the class of facts, that also are often supported, especially outside science, with what is in fact propaganda, wishful thinking, deception, fraudulence (if money can be made from the acceptance of a particular explanation) or plain ignorance.

HypsEtc06

The result tends to be lots of confusions, which many people resolve by plugging one explanation or approach, and disregarding the rest (as happens also in religion and politics).

This is the case with ME/CFS:
  • In real fact, there probably are sub-groups whose symptoms are similar but that require different explanations to truly account for them. [1]
  • In real fact, there are a number of players involved that have specific personal and/or financial interests in getting certain (kinds of) theories accepted. [2]
  • In real fact, some of the players - notably psychiatrists, politicians and bureaucrats - pretend to speak in the name of science, but do speak as they do because of financial reasons. [3]
  • In real fact, most medical doctors one sees as a patient with ME/CFS pretend they know far more than in fact they do, and a considerable part of them is willing to lie and lies consciously to patients. [4]
  • In real fact, medical doctors know a lot less than they think they do, especially about rare diseases, while most would be much better doctors and human beings if they admit their ignorance more honestly: There is no shame or blame in saying one doesn't know if one doesn't know, one is wilfully playing with a patients chances if one pretends to know if one knows, or could know, or should know, one does not know.
Finally, it is likely that I will write less about ME/CFS. There are several reasons for this but the main one is probably that there are too many liars and posturers on patients forums, some of whom are patients, and some of whom are trolls from public relations firms, and I am thoroughly morally sickened by them, while the presence of liars, deceivers, and ignoramuses who insist on getting involved in any discussion makes the chances for patients to do anything useful to help them very small indeed.

But one of the things related to ME/CFS that I will try to do, hopefully soon, is to review the ME-Resources section: I have gathered a lot that is somehow relevant or helpful, but I  haven't updated much since 2010, though I did update some in April 2012, and not since.

As usual, I do as and if I can, and not as and if I want.

----------------------------------
Notes
[1] Here are some (and in these notes I am speaking of ME/CFS):

- problems with producing energy (mitochondria)
- problems with digestion
- problems with the brain
- problems with recuperation from a disease
- problems of an autoimmune nature
- genetical factors that make or keep some ill
- madness or malingering

The last is possible, but applies only to a small sub-group (of the many millions that complain of the symptoms): Living from the dole is really unpleasant, and those who speak as if it is not are either lying or deranged or believe propaganda.

[2] As a rule everyone who is involved has some financial and some personal interest. This holds for

- patients
- doctors
- bureaucrats
- politicians
- journalists

while this is almost always denied by the last four groups: Doctors pretend to do for science or for moral reasons what they do for money; bureaucrats pretend to be impartial while doing what politicians told them, to keep their jobs; politicians lie to the public to further their personal or party agendas; and journalists write for money or - sometimes - have been hired to deceive.

Incidentally: There is no hard and fast rule that applies to all, except this rule.

[3] This is especially so for psychiatrists, and those who base their policies on the pronouncements of psychiatrists. If you want to know more about the pernicious marriage between psychiatry and public relations, that started in the 1920-ies, when Sigmund Freud and his nephew Edward Bernays teamed up, check out
It's a lot of video (nearly 4 hours), but it makes its case quite plausibly.

And it does seem to me that, both in the case of ME/CFS as in case of the public at large, both with regards to voting in politics and to buying commodities, people in the US and Europe, especially, have been played like suckers by extremely dishonest and immoral con men and women working for public relations firms or in marketing for decades now.

[4] I am speaking for myself and from my own experience:

I have met good and honest medical doctors, like I have met good and honest persons, but both groups are in a minority in the general population of their nominal likes - and yes, I am a psychologist and a philosopher of science, and no, I do not like being lied to by a person with a medical degree, who seems to kick on making money from being regarded as an authority:

In the field of ME/CFS, and indeed in the field of rare and uncommon diseases, ordinary medical doctors, and also the great majority of medical specialists, have no relevant knowledge, and lie if they pretend they do.

And as before: Ignorance, if admitted, is no shame and no ground for blame - and also medical doctors can help their patients also in case that they do not know the explanation for the illness of the patient, and the necessary pre-condition, in almost any case, is honesty, at least to themselves, that they don't really know.

And it may be helpful to add that for such diseases as are in the medical handbooks, especially if they are fairly common, seeing a GP tends to be  really helpful, and in general it does make sense to try to see a GP or a medical doctor if one falls ill: A lot is known, even if at least as much is not known, and if there are no presently known causes or presently known specific treatments, a medical doctor generally can offer some form of help or useful information, that one cannot find oneself if one is not a medical doctor.

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)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
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)
9.
Maarten Maartensz
Resources about ME/CFS
(more resources, by many)


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