Yesterday I outlined that and some of the
reasons why I call myself presently "an expert on ME" - having it for
the 33rd year, being a psychologist and a philosopher, with excellent
degrees all acquired while having ME, having read the last 15 months a
great deal about I wasn't aware of before (*),
having read a lot of US and English internet forums for patients with
ME, having seen the antics, nonsense, posturing and bullshit not only
of fraudulent psychiatrists trying to appropriate ME and its patients
as a prop for their incomes, but also having seen the the antics,
nonsense, posturing and bullshit of self-styled "leaders of our
community" (of persons with ME) Cort Johnson, Patricia Carter and
Marly Silverman, whom I regard as incompetent to speak for me, and
indeed about ME, indeed both morally and intellectually.
Today I shall make a number of point about
ME-activism, continuing in a way these items of this year, and most I
wrote in Nederlog in 2010 that
was almost exclusively about ME (12 MB of text, 12 MB of images):
And I shall make these points under the following
1. on presuppositions
2. on physical problems for ME-activism
3. on forums of ME-patients
4. on anonymity + internet = trolling
5. on arguments and argufiers about ME
6. on the bullshit "unity"-trope for
7. on doing your own thing on your own level
8. on advocating for ME-patients
9. on organizing activism for ME-patients
10. on my own take and position concerning ME
Nothing I will say is my final thought on the subject,
but it is very likely what I say will inform my own activities around
ME. Also, what I write - as usual - is directed first and foremost to
the minority of truly intelligent persons and not the majority of
followers, posturers, con men and women, trolls, and those writing on
forums merely to be social, virtually speaking.
So this is probably only of interest to a few
who are intelligent and have ME (or take care of someone with ME) - to
which I must also add (and see section 10 below)
that my own position with ME is morally, legally and personally quite
unique, since a great part of my problems with ME are not so much due
to having ME, which I did not have in a severe form the first 10
years, but [A] to my protesting, while having ME,
against the decline of
civilization, standards, morality and science in the universities in
general and the
University of Amsterdam, where I also was 'a studentleader' for
that reason, and was effectively removed thrice, invalid and all,
to the great sadistic glee of
its board of directors (also thiefs of 45 million guilders), from
the University of Amsterdam, and not allowed to get the Ph.D. and [B]
to my protesting, while having ME, to the dealing of drugs from the
house where I lived, with attendant enormous noise most of the night,
which made it difficult or impossible to sleep, and with murder
threats by the dealers, when I objected, all protected by mayor,
aldermen, municipal police and Amsterdam bureaucracy, for since I
protested this 22 years ago - since when I have been refused ALL forms
of help beyond minimal dole, whereas it was all the time admitted I am
an invalid - only in Amsterdam, only in soft drugs,
220 billion Euros - euros 220.000.000.000 - have been
turned over, protected by mayor, aldermen, municipal police and
Amsterdam bureaucracy, who very probably take a percentage, since
decades, though this will be very difficult and dangerous to prove.
The facts about and around my own special position
with ME in Amsterdam
have been outlined in Dutch in
ME in Amsterdam,
and are known to Amsterdam's mayors, aldermen and council members
since 1996 at the latest (in fact, mostly since 1988-9 or before).
They have never been contradicted in any way, while
they are clearly defamatory and slander if false, and detail major
crimes if true. They are major crimes by anyone's standards
outside Netherland, and are major crimes by the Dutch laws,
but apart from myself, very few Dutchman care, or want to risk the ire
of the mayors, aldermen or drugs maffia in Amsterdam, that effectively
and in practice are the same hugely profitable totally corrupt,
mortally dangerous institution, much like civic corruption during the
US prohibition era, when alcohol was forbidden, and police,
bootleggers, and city administration could get extremely rich in a
short time by helping each other to trade illegal untaxed and
uncontrolled commodities with huge profit margins.
1. on presuppositions
Since in fact what one knows, beliefs and presupposes
is of key importance to what one is, may do, and succeed or fail in, I
must start with articulating some presuppositions that involve
knowledge of mathematics, logic, philosophy of science, psychology and
As to the first group and in general, see
As to ME in particular, I repeat - with some changes
and deletions (*) - my
in this section
This is an attempt to gather a number of useful and interesting documents relating to
Scientific material about ME
Subjects + summaries
discoveries about the biology of CFS (pdf)
This is by prof. Komaroff (Harvard) and
is a brief pdf file that lists ten reasons why ME is not at all "all in
the mind" and ME is a real organic disease
This is a medical report prepared for
the Canadian Government by 14 medical doctors and professors, that is
widely regarded as the best medical summary and the most sensible
criterions to define ME. This is the full version with additional
material. On the net there are various briefer versions. See the next
This is a more popular and readable version of the last listed
Canadian Diagnostic Criteria prepared by two doctors who wrote the
Criteria. It provides the best overview of ME for people who did not
Dr Byron Hyde's Nightingale ME Definition
Dr Hyde treated many patients with ME and prepared in 2007 his own
definition for the Gibson Enquiry. This is it.
Dr. Byron Hyde's Little Red Book
Dr Hyde's 2006 description of what ME is and isn't.
Dr. Myhill's CFS Book
Dr Myhill treated many patients with ME and has developed a specific
set of tests and treatments. This is her book about it.
Dr Myhill has a specific theory about ME viz. that it is due to a
malfunctioning of the energy-pathway in the mitochondria, which is a
theory I am myself a bit partial to, because I thought up much the same
theory for my complaints in 1987.
Dr. Bell's mitochondrial theory
Dr Bell treated many patients with ME and also developed a theory
about it. The above reference is to a html-file. There also is a book on
paper by him on his theory, for which see
his booklist on his
Important sites with much material
This is a well-done extensive site with much material and many pages
(left) and a fine collection of html and pdf files (right) part of which
is linked on the present page.
The left links to a useful, site by Cort Johnson, an American with ME
for some 30 years, which much material and many files. He also created a
forum (right) about ME/CFS,
that must be interesting for anybody with ME or with an interest in ME.
Dr. Myhill's ME-Book
These are the same links as above and are repeated here because
especially dr. Myhill's book may be helpful - in some respects - for
persons who do not have access to a good medical doctor who is informed
Hillary Johnson is an American investigative journalist with ME since
decades who wrote a fine book about the oddities surrounding ME in the
US in the 1980-ies and 90ies. The book is called "The Osler" and
the left side gives the link to the site about the book, while the right
site gives the text of a lecture by Hillary Johnson in May 2009 that
explains and comments some of medical, political and institutional
mismanagement of ME.
The Hummingbirds' Foundation for M.E.
The medical facts
This is an extensive site hosted in Australia by patients with ME. It
is a good systematic overview of the facts about ME.
The controversy around ME
In fact, there are quite a few controversies around ME, but most of them
are connected to if not caused by the fact that three groups of mostly
psychiatrists - organized around doctor Reeves in the US, doctor Wessely in
the UK and doctor Van der Meer in Holland - have succeeded over the last 20 to
30 years in (1) psychosomatizinig ME: according to them it is a psychiatric
disorder without somatic basis and (2) manipulating the research funding for
ME into the pockets of psychiatrists of their own kind and not into any
scientific biomedical research.
This is odd for various reasons four of which are that (a) the theory of
Wessely and co. is not properly scientific or rational in any decent sense of
the terms "scientific" and "rational"; that (b) there is a lot of excellent
biomedical evidence that ME is a real organic disease, as indeed it is
according to the World Health Organization (WHO) since 1969; that (c) although
not helping persons with ME, as is the normal course for such persons in the
US, England and Holland, at least, since decades, surely must be profitable for
governments and insurance-companies that want to save money, even so this
practice is neither
moral, nor medically warranted, nor legally correct, and many persons with ME,
that is a real and serious disease according to the WHO and thousands of
medical doctors, are without any real medical or social help
essentially because a handful of psychiatrists have succeeded in manipulating
the health funding and governmental health policies with regards to ME;
whereas (d) there are excellent scientific arguments to the effect that the
psychosomatic psychiatrists of the Wessely school are mistaken in all their
major claims about ME and that their published so called "scientific research"
on the subject of ME is scientifically worthless and morally despicable, and
also probably not properly legal either.
This section needs more documentation, but for the moment here are three
Magical Medicine (pdf)
This is professor Malcom Hooper's 2010 summary of the many arguments
against the psychosomatic psychiatric school of Wessely, also with much
evidence about the great harm Wessely and his co-workers have done to
THE MENTAL HEALTH MOVEMENT:
PERSECUTION OF PATIENTS?
This is professor Malcom Hooper's 2003 argument against the
psychosomatic psychiatric school of Wessely, and in defense of many of
Sophia and ME
In 2005 Sophia Mirza died, horribly and painfully, after having spend
years in bed without help, without being able to speak or sit up, and
after having been sectioned and maltreated horribly by co-workers and/or
followers of professor Wessely. The link is to the website that her
mother Criona Wilson made about her, her disease, death and
maltreatment, and is quite impressive, also because everything that
happened is given in precise detail.
Clinical Guidelines for Psychiatrists (pdf)
Not all men nor all psychiatrists are evil, bad or mad, and Eleanor Stein
is a psychiatrist who isn't and who wrote a good set of guidelines how a
good psychiatrist should react to persons with (apparent) ME.
If you have not read and rationally comprehended most
of the above, you are, as far as I am concerned, not really qualified
to judge about ME or indeed about me (and the last requires rather a
lot more knowledge than about ME).
Of course, you may have ME and be a perfectly sensible
and moral person nevertheless - all I am saying is that something like
the above, most of which is quite well written, as science and
medicine go usually, is necessary to be able to rationally judge
things, events, assertions, claims and persons relating to ME, also
including claims by "scientists", "patients", and "advocates"
concerned with ME.
Back to Sections.
2. on physical
problems for ME-activism
Two important reasons for my reactions to Mindy
Kitei's Editorials - see my
of late are that - while I think she means well and is
well informed about ME/CFS - firstly that she (like many patients with
ME, in fact) has some quite romantic notions about activism for really
ill patients with ME, and secondly that she has mistaken notions about
the virtues of unity.
The last mistake I shall take up below, and about the
first mistake I merely say this:
The activism Mindy Kitei seems to have in mind, and
advertises by repeating the Aids Activist Larry Kramer's opinions and
speech(es), is beyond me and beyond most persons with serious ME -
while it is also far too romantically misconceived by me (who has seen
a whole lot of activism and activists in his life, and was a
studentleader, and is the oldest son of heroes of the Dutch Resistance
against Nazism, and prominent members of the Dutch Communist Party: If
I have opinions on activism, they have the merit of being based on
very much more relevant knowledge than anyone I know with ME).
This is quite a serious concern for me, because I know
that a number of the most intelligent and sensible patients I have met
on forums for patients with ME, indeed like myself, have exerted
themselves far too much by writing for and discussing on ME-forums,
and are much more ill now than they were in 2009.
If this is the case, simply by doing too much in
writing posts for a forum of patients, many more will be
much worse afflicted if they indulge in the physical activism that
Larry Kramer, and in his wake Mindy Kitei, propose to patients with
So I'd say that persons with ME who want to be active
in advocating or putting pressure on bureaucrats or politicians should
do so mostly by using the internet, and not by physical
demonstrations, or by getting arrested for breaking the peace.
There remain two problems, namely (1) how to use the
internet effectively and (2) it is still - quite easily also -
possible to endanger one's health merely by writing for the internet,
but then that risk, and the consequences if it does happen, are very
probably much less serious then what a pwME may get from physically
attending demos, trying to emulate Larry Kramer, or getting arrested.
Back to Sections.
3. on forums of
I have last year written rather a lot for the Phoenix
Rising Forum - PR-F - and a bit for the MECFS forum - ME-F - but don't
do so anymore: I have withdrawn from PR-F, and assume that was what
The Owner Cort Johnson and his moderators anyway wanted to achieve,
ever since February 2010, simply because someone like me is dangerous
for persons with their abilities in their positions (I can take them
apart in argument or by satire whenever I want, which they can block
only by restraining argumentation or removing me somehow), and I have
been thrown from ME-F, because I criticized nazi-like bullshit that
also closely copied Wessely's opinions by friends of The Owners of
that forum, who anyway don't want the likes of me for precisely the
same reason as I am not someone liked by Cort Johnson and cronies: I
know more, am much better educated, and am a much better writer,
argufier, and satirist, besides being a psychologist and philosopher
in terms of degrees.
Somewhat naively, I had expected that being a real
psychologist and philosopher in terms of degrees, and having ME for
over 3 decades now, would make it easier to make myself heard and
"respected" as the so popular phrase is, but there I as, as it turned
out, totally mistaken: The only ones who liked to read what I wrote
where those who had the intelligence to comprehend it properly, for
the most part, and those are - not only on the subject of ME - in a
There is an equation on the internet that contains
anonymity + ordinary people = trolling
Indeed, that is what it comes down to, not only on
ME-forums, but it seems on nearly all social internet-forums in so far
as they are anonymous, with contribution by a vast majority who
decline to give their real name, their educational accomplishments,
their outlook, or their erudition and were not capable of making a
decent internet site:
It seems as if ordinary men (and women, and I am not
ordinary, not in background, not in education, not in intelligence and
not in life experience) feel in majority mightily relieved to find
themselves without ANY effective personal responsibility or personal
accountability, as soon as they are the anonymous members of some
The main reason this is such a relief for them, is
that at long last they, together with the majority of likeminded
equally intelligent similarly morally gifted ordinary folks, can take
revenge on anyone outstanding, anyone more clever, better educated,
better writing then they are, whom they now feel free to pester,
persecute, and interfere with to no end, on any pretext.
This seems to happen on all social forums where the
majority consists of anonymous ordinary folks, who there display all
totalitarian attitudes, envy, cruelty, stupidities, and democratic
selfrighteousness of the mass of the undereducated, the stupid and the
cognitively challenged, and make any protracted rational debate of
virtually anything whatsoever totally impossible.
For this reason, social forums are a waste of time and
energy for the few who are truly intelligent, highly educated and of
good will: That you belong to that few - and it is that few ordinary
folks object too: Sports heroes and media celebs, by contrast, are
adulated as if they are nearly divine - is sufficient provocation for
many to try to level you, shut you up, or remove you completely,
presumably for the same reason as Mao's Revolutionary Guards killed
persons with glasses: 'You are too intelligent; that is disrespectful
for those who are not; you are a danger to our community - off with
This happened to me on two forums; it happened to at
least five others I know from such forums as intelligent, good
writers, and highly educated; and it is what happened all through
human history: Whomever tries to emancipate mankind, must expect to be
crucified, burned alive or tortured, by ordinary folks or in the name
of ordinary folks, and usually for the awful crime of not being like
everybody else who is ordinary, and therefore worthy of "respect".
In brief: Social forums are useful for finding
and exchanging information (about a disease, on ME-forums); meeting
people; and providing links, but they cannot be used for
rational debate amongst rational highly educated persons, nor can they
be used to organize any advocacy.
The reasons are as given, to which one must add that,
besides, persons with ME come from all walks of life, all levels of
(mis)education, all manner of religion, all ages and so on, namely for
many more characteristics - there just are no shared features
apart from (a belief that one has) ME and being human, and these, as
men and women are on average, are not at all sufficient to
guarantee anything like rationality, reasonability, politeness, or
whatever else that is required for intelligent debate (wit, relevant
knowledge, self-control, erudition etc.)
In fact, on social forums, the average you meet is
like the average reader of the Daily Mail - or worse, for
And just as bad money drives out good money -
Gresham's law, of much wider
application than to money - so bad people and bad communications
drive out good people and good communications.
So while unrestricted anonymous social forums are good
for virtual socializing, and for finding and exchanging and providing
information, and also for getting to virtually know of persons one
might find interesting, they are not good for much else, if only
because the many kinds of folks attending them, and their average lack
of education and of shared orientations.
Back to Sections.
4. on anonymity +
internet = trolling
In fact, I have said most of what I wanted to say
above, and in Nederlogs like
but I do want to add one personal note, related to the
title of this section, and the various obnoxious anonymous nutters and
assholes I have encountered on ME-forums:
I have found few who can write and think rationally,
and few who are scientifically qualified, which is more or less to be
expected, the way human beings are, but I was unpleasantly surprised
by the levelling or totalitarian attitudes of quite a few on
ME-forums, by large doses of pettyness, fallacies and impoliteness,
and by the totalitarian ease with which totalitarian small minds
demand "respect" and presume to speak "in the name of our community".
As my title indicates, which is an equation I found on
the internet, I am willing to assume it is mostly that.
Back to Sections.
5. on arguments and
argufiers about ME
I have meanwhile read lots of arguments - in which,
being much concerned with logic, I am much interested in, and know
much about, logically speaking - and lots of argufiers, but most that
I read was low quality, and not only by patients with ME.
One serious problem as regards arguments,
argumentation, and the fact that few patients with ME I have read are
worth much in the way of written argument, is that what they are
opposed to, specifically what emanated from the CDC, King's College,
and Radboud University, is intentional pseudoscience: It is written to
deceive, it is fraudulent, and the most important of those who
produced it - probably not many of their followers - full well know
this, I have meanwhile found.
This makes arguing about ME more difficult than it
would and should be: One's opponents are professors of psychiatry who
are fraudulent pseudoscientists, who use scientific sounding
terminology and pseudorational argumentation to propound bogus science
and bogus therapies, the end of which is that it keeps them in a job
and in pay.
And this makes arguing about ME more difficult in that
it adds quite a few layers of complexity, irrationality and above all
dishonesty: One is not arguing against honest persons who are mistaken
and know they may be mistaken - one is arguing against dishonest
persons who made a travesty and propaganda instrument of what they are
pleased to call 'evidence based medicine'.
A reason this may become quite important in a few
years is that the same as has been going on with ME, say the
psychiatrization of real disease, is now happening on a much larger
scale in the DSM-5 to be of the American Psychiatric Association, that
seeks to psychiatrize all medicine, in the interests of psychiatrists:
If this succeeds, people with ME and other diseases that are either so
far lacking a biomedical explanation or have only very expensive
therapies, will be classified and treated as nutcases, and denied
access to real medicine.
Back to Sections.
6. on the bullshit
"unity"-trope for ME-patients
There is, since months, possibly at the instigation of
Marly Silverman, a widely repeated call or and insistence on "unity"
among ME-patients. Logically speaking, this is a wellknown Stalinist
and Maoist means to get rid of all opposition: They disagree with us,
"therefore" they are "against unity"; "our community" needs "unity";
who is against us are "bullies", "dissidents", "opponents", "traitors"
and what not, if they are not "mad" to start with - for isn't unity a
It is, in hordes and totalitarian dictatorships, and
in authoritarian religions. And especially with ME, that strikes
irrelevant from religion, politics, education, or intelligence,
"unity" - if at all meant sincerely, and not as a verbal club to beat
one's opponents with, like the often combined claim the opponents need
to learn respect, use inappropriate language, and anyway unsavoury and
not of our kind and our community - it is utter nonsense - chimaera.
As I quoted before:
Back to Sections.
7. on doing your own
thing on your own level
And to quote more from the same source, and instead of
braying anonymously for "unity", on a virtual forum for ill persons of
all possible backgrounds, beliefs, and educations and lacks thereof:
Make your own website! Make your own Blog! Write your own texts!
Cooperate with folks like you - ill like you,
intelligent like you, educated like you - and then, once you have some
following or traction, with others.
Do not follow the leaders who have shown themselves to be dysfunctional - that
is, those who have set up shop already, and pretend they are something
special: They are not.
Speak for yourself! Do not loose time and energy by lengthy
exchanges on patients' forums! Do your own thing! Be your own person!
Cooperate with those like you! Leave alone the stupid, the
imposturers, the bullshitters, and those who can't write and don't
And no... I do not guarantee this will work. But it will
give you some self-respect; it will enable you to defend
yourself a bit better; it may bring you fame as a Blogger or
site-owner; and eventually it may get together sufficient people of
sound sense, real abilities, and real scientific understanding to make
a real difference.
That is the way to go - and see my
Some good info about ME and
some good ME-sites for some examples of good ME-sites. And to
quote myself from thence:
None of these probably fully agrees with any of the others and I probably
do not fully agree with any of them - but then there is no need for that
if one sees someone makes sense, can write and can think.
I have to say this,
because not so smart people, of whom there are many, tend to have less
liberal and more totalitarian ideas and want "One
Voice, One Community, One Cause" (their own, as
in "Ein Volk, Ein Reich, Ein Führer": Frightening
stuff, if you have the intelligence + knowledge to see it, is
true. But OK... if the great majority feels that way, it must be right,
mustn't it? 'DO follow the multitude, for Our Community's Good', isn't that what the
Good Book says?)
Back to Sections.
8. on advocating for
There is and has been a considerable amount of
advocating for ME-patients, by ME-patients, and also by others, such
as carers and doctors - besides which there also has been "advocating"
for ME-patients, in the hope to sell therapies, medicines, supplements
or cures to them or to deceive them into acquiescing professors
Reeves, Jones, Wessely, White etc. mean well or may have it right.
By and large, the former kind of advocacy, meant to
help really ill people with real science and disability benefits and
medical research, has not been succesfull at all, measured by the
rather objective criterions how much money has been invested into
biomedical research or indeed real help for real patients with ME:
Very little indeed, also compared with what is invested in research
and help for real patients with other diseases.
Part of the reason for this lack of success is the
success of the pseudoscientists, which again could succeed because so
few patients are really qualified to dispute with psychiatrists or
professors of other kinds, and because the bogus science of Reeves,
Wessely etc. is craftily composed from fallacies in logic, definition,
classifying, probability, statistics, and methodology besides being
composed in obscurantist language and being wilfull propaganda mocked
up as science. (See the BMJ-editorials, for example:
On the postmodern falsifications in Wessely &
On the other hand, the patients and their medical
allies also succeeded in articulating and putting on line considerable
amounts of good arguments and of biomedical evidence, which can be
found partially linked with clarifying comments in
Some good info about ME and
some good ME-sites.
Here one problem is to collect and select what's
there, and make it into good, clear, well-written, good looking
presentations about ME or aspects thereof that one can send to
parliamentarians and journalists.
This leads to the next subject.
Back to Sections.
9. on organizing
activism for ME-patients
There are a number of chartered organizations -
charities in England - with paid staff, members and a yearly budget
that are, really or formally, dedicated to advocacy and activism for
ME-patients, but as mentioned before: when measured with the objective
criterions how much money has been invested into biomedical research
or indeed real help for real patients with ME in the years they have
been active, these organizations are of very little effective help or
difference - except, of course, for their staff, but then a good
question to ask about any organization is this:
Does the organization exist to further a not existing end, or does
it further a not existing end to exist itself?
If it so happens that the CEO of one such organizations for persons
with ME earns more than the Dutch PM and has a mother in law - I think
- acting as anonymous patients, some priorities seem to have been
lost, or twisted.
In any case there are vastly more patients not happy with the
organizations and charities purportedly working for them (which they
sometimes indeed also may do, even if the real aim of the
organization's staff is to see its staff paid), for which reason one
relevant question is: How can patients organize themselves to get
effective activism for ME-patients?
As indicated, my answer is along the lines:
Not by following existing organizations or leaders in the field of
ME-activism, but by setting up one's own website, possibly cooperating
with a few likeminded folks, and getting up good stuff about ME in
general, and indeed also one's personal situation, so that one's site
at least may serve one's own interests. See 7.
above: MANY initiatives, rather than few, for different reasons, by
different groups and persons.
Back to Sections.
10. on my own take and position concerning ME
My own take is similar, but with a twist: As outlined several times
in Nederlog, and as you can see when you read Dutch in
ME in Amsterdam, my
own situation with ME is rather different from any I know, in
that, since because of it I came into problems with the university of
Amsterdam (about the level and content of the education) and with the
mayor and aldermen of Amsterdam (about the fact that they protect
murderous drugs-mafiosi rather than maintain the law): Had I been
healthy, I probably would have left Holland in 1980 or before, given
the declines in civilization, education, and public, political and
In any modern state of law, I am legally and morally and factually
totally justified - the reason I can't act on it is that I am not at
all healthy and doing so is quite dangerous also for healthy persons.
So since quite a while - many a long and painful and ill year - I
will act if I have to, but prefer to act if I am at least somewhat
better than I have been, all that while.
I do believe this makes my position in law quite different -
and much more hopeful in any court case - than if I merely had ME,
which indeed has been much aggravated by the situations the board of
directors of the university of Amsterdam and the mayors and aldermen
of Amsterdam placed me in, willfully and illegally, but hampered by no
Dutchmen, since these for the most part want moronic education and
free access to all manner of illegal drugs, and anyway are afraid to
irritate either the Dutch authorities or the Dutch drufs mafia.
On the other hand, it changes nothing about my having ME, and my
having been brought down with much worse ME than I had, because of the
illegalities perpetrated against me, on purpose by the the leaders of
the university and of the municipality of Amsterdam - which again I
could not escape, as I cannot and could not escape Netherland, because
I was and am ill.
In sum, I will probably more argue my own unique case, than the
case of persons with ME.
Also, for others than myself with ME and a good mind: THE way to do
something for persons with ME is help yourself by setting up your own
site to defend your own interests and propose to the world what you
think and want, and why you arrived at those ideas.
And THE way to loose a lot of time and creativity, is to argue on a
forum, or to follow "leaders" like Cort Johnson, Patricia Carter,
CFS_since_1998, and Marly Silverman, or to scream for "unity" amongst
folks of all kinds and outlooks and degrees of abilities.
God helps those who help themselves - and without God doing it, and
one's self-acclaimed leaders producing mostly trash, one has to, if
one wants to get anywhere better anyway.
Back to Sections.
So far for the 10 points about and around ME-activism I wanted to
clarify. I could say more, and could have said less, and probably it
anyway is of little help to most, but then I do have some intelligent
readers, with and without ME, and it is always to these that I address
(*) Namely because (1) I had no fast
internet until July 2009, and could not well surf the internet before,
while relying for my information on Ellen Goudsmit (2) who choose to
leave me and anyone else following her prose to keep up with the
science about it chose, treacherously to the spirit of science, of
morality and of honesty, not to inform me in any way
about the existence of the papers, essays and books by Hilary Johnson
and Malcolm Hooper, which accordingly I only found in then end of
2009, after having started to read again seriously around and about
ME/CFS because of the publication in Science of a paper relating XMRV
- a newly discovered retrovirus - and ME.
(**) "Recreational drugs" are
forbidden in Holland as elsewhere. I think legalization is the
only way to solve the drugs problem, as I also think
they have not been legalized in Holland, in the end, with
excellent reasons to do since 40 years, namely its explicit
"toleration", as it is also called, by special personal permission, by
mayors and aldermen, with the mayor also in command of the local
"Tolerating" dealing drugs while forbidding them is in
effect creating an enormous found of illegal profiting for the
mafia, and such industries as they finance, such as investments in
buildings and building, and also makes for enormous riches for
local bureaucrats and politicians, no Dutchman wants to know
And because the drugs mafia is known to be very
dangerous and murderous, and no drugsrelated murder gets ever solved
with drugscorrupted police forces, no Dutchman does anything about it:
The Übermensch of Helmond, Holland -1
what that leads to.
As for me, I am genetically afflicted, I suppose, and
in a - locally: o tempora! o mores! - bad way:
Why my family was in The Dutch
Resistance in WW II.
P.S. Corrections must wait till later.
And maybe I should also say that so far this year I have kept up with
Changes: Summaries of relevant changes on the site.