1.1. My own position with ME differs from that
of all others
My position with ME is different from that of everyone else: My ex and
I both got Epstein-Barr in January 1979 and never got better, and
separated after six years. I was diagnosed with ME in 1989 by my G.P. and
in 1991 by an internist, and in 2005 by a specialist on ME.
Meanwhile, the first ten years I had comparatively mild ME, that did
not allow me to lead a normal life, because of lack of energy and muscle
aches, but that did allow me to study philosophy and psychology, and
indeed also be a student leader in the early 1980ies in the University of
Amsterdam, protesting and trying to stop the levelling and bad quality of
the university education and politicized teaching and postmodernism in
various forums.
It was this that led soon to great difficulties with the Board of
Directors of the UvA and with a few incompetent professors and lecturers;
to my heading a student-party, with some exceptions because of my
illness; and to three forced removals from the UvA, basically because of
my published and publicly outspoken ideas and
the questions I asked.
In 1988 - after several times of not being a student, because of
removals and problems and lack of help while being ill with ME - I was
removed as a student of philosophy, and a few months later gassed by the
combined forces of the house-owner and the drugs-dealers that had been
given permission by the mayor of Amsterdam to deal soft drugs from the
ground floor where I lived, and who in fact tried to get rich real fast
by way of hard drugs and threats with murder against people who dared
complain.
I dared complain. The police of Amsterdam and all Amsterdam
departments of the city-government looked the other way and denied there
was any problem. I went to mayor Ed van Thijn, who had come to be mayor
because of his Jewish background and because he daily swore hourly,
preferably in front of cameras, that he governed Amsterdam "in the name
of the ideals of the
February-strike" (of 1941, in Amsterdam, against the
razzias and deportations of Jews), for which reason i.a. my father and
grandfather had been arrested, as members of the communist resistance,
that organized that Strike, and had been convicted, in 1941, to
concentration-camp sentences, as political terrorists.
My grandfather was murdered, my father survived, and eventually got
knighted in Amsterdam's municipal hall in 1980, as the main organizer of
the Dutch National Exhibition about Fascism and Resistance, in which
capacity my parents had briefly met Van Thijn.
Mayor Ed van Thijn refused to receive me; refused to answer my
letters; refused to phone me; and let his minions state that nothing was
the matter, and that if I was troubled by the drugsdealers I should move.
Meanwhile, I had been gassed in September 1988 because the houseowner -
hand in glove with the drugsdealers - had made the only chimney collapse,
and the dealers had started to threaten me thus: "If you do anything we
don't like, we will kill you", and the municipal police had refused to
come, to investigate, or to do anything many times.
All of this has been explained in Dutch, in considerable detail, with
full documentary proof, in
ME in Amsterdam. No Dutchmen cared, because the mayor of
Amsterdam is a powerful man, and his Labour Party a powerful party, and I
am just one individual, and an ill one at that,
who moreover dares and did say all manner of things about Holland, and
especially the state of the Dutch education and universities, nearly all
Dutchmen found most offensive, until in 2008 a Parliamentary
Commission investigated the state of Dutch education, and published a
report (the Dijsselbloem Report) that strongly supports everything
I had said and published
on the subject since 1977 (when I remigrated from Norway to study in the
country and city I was born).
Now all Dutchmen should be able to verify that
much of what I say about Holland, both in
ME in Amsterdam
and in Nederlog is quite true, if quite painful
for Dutch chauvinism, the more so as I am provably right about
publishing and saying many things I in fact was removed from university
for - something no Dutchman ever was, being removed because,
as the Board of Directors wrote in
its letter, because of my "publicly outspoken ideas", since the end
of WW II.
If what I say on my site were false, in
particular if this conversation of August 1991, taped and on line since
many years in Dutch and now also in English were false
ME + me :
Conversation with Miss Mr. Maureen Sarucco
Amsterdam Municipal Chief Order and Security
I would have been arrested long ago.
All of this also makes my own
position with ME quite special in ME-land:
No one else has been kicked
repeatedly from university, and proved right in all his main contentions;
no one else has been gassed by mafiosi protected by three
Amsterdam mayors and by all Amsterdam and Dutch bureaucrats (for my site
shows I have personally asked, written, mailed everyone possible, over
the course of two decades: No one cared); and also no one else in
Holland has my background, my abilities and my proven track record, for
apart from the above I also managed to get an M.A. in psychology with the
best possible marks, while all the facts relayed above are provable
facts.
Therefore... if I get to be
95, and can argue and write most of that time, I'll die quite a
rich man, I suppose, if the world continues more or less as
before, of course. (The readers is adviced not to take bets on it,
though, unless he knows what a Dutch book is, in probability theory, to
be sure. (*))
1.2. The situation since the
Lo/Alter paper changed a lot around ME
One general result that the Lo/Alter-paper has achieved, at least for the
time being (!), which I insert because MLV/XMRV may still turn out to be
not strongly or at all causally related to ME, a new position for people
with ME and advocates for pwME, namely that for the first time in some
two decades there is very serious science that does back up the notion
that ME/CFS is a real biological disease, and that backs up the notion
that real scientific research into it is really rather urgently required,
also on governmental level, at least in the US, and
possibly even now in The Netherlands.
And at least for the moment this takes away some of the need for
patients' raving and ranting: It is quite possible help is on the way
now, especially if Lo/Alter are right, and some clinical trials turn out
well (and none bad). (**)
Meanwhile, whether this remains so remains to be seen,
and one can be quite certain that meanwhile the Wesselytes, at least,
will continue with their pseudo-science, very possibly changed to the
tune of "we admit nay insist on physiological causes AND that we psychos
are the ones to treat these", and there also other threatening
developments, such as the ongoing economic decline (the bankmanagers'
incomes and profits will be saved at the cost of the patients' benefits,
in part, and certainly in The Netherlands) and
the arrival of the DSM-5,
that very probably will attempt to give many, possibly all, diseases a
psychological dimension, so as to provide psychotherapists and
psychiatrists a continued income from the miseries of genuinely ill
persons. It also endangers everybody with ME/CFS if the cause of this
disease has not been found by the time the DSM-5 will be in force.
So there is lots to do for patients with ME. Two
relevant questions are: How should they do it? and Are ME-forums the
right way?
2. Some observations on ME-forums
In fact, most of this continues yesterday's Nederlog, and
repeats (in somewhat altered form) some footnotes I made some may have
missed.
2.1.
PR-F somewhat upset
I believe my title more or less catches the events
accurately, though it is difficult to find the right terms, and the upset
I speak of I also spoke of yesterday. And there are at least two threads
that illustrate my meaning ("at least", since I can't access all of PR-F,
not being a member:
Together these are over 230 posts, involving also
quite a few removals of posters, some so quick that at least one arrived,
posted and was removed within a few hours today.
What is true is that those removed were clearly
spoiling for trouble, and what is also true is that I have also - while
being a free speech person, in principle - been in favour of moderation
on forums for ME-patients, in the double senses of using moderate
language (apart from the odd bit) and agreeing that such forums better be
moderated, for various reasons.
Meanwhile, I only register the fact of the upset
(not a large one, I hasten to add) and have provided the links for those
who like to know more and make up their own minds.
2.2.
ME-forums are not fit for advocacy
The previous claim and title are the subject of a note I
made earlier, that deserves repeating (in a slightly different form)
ME-forums, with present technology, are NOT fit
for organizing advocacy, because of the presence of trolls and the
average level of contributions, that include the needs for ill people
and/or overworked advocates to read through interminable posts by members
who do not
know the relevant science or who lack the relevant background knowledge or
who lack the capacities for making a rational wellwritten contribution, but who nevertheless write post after post after
post.
ME-forums, with present technology, ARE fit for meeting people,
for exchanging information, and for getting to
know some folks who have similar afflictions and a shared outlook, set of
values, or set of ends. With these then one may, perhaps, try to set up
one's own site, as several members of PR-F meanwhile have done, and do
advocacy according to the ideas, values and abilities of the group - but trying to
organize an ME-forum as a site for advocacy from that forum
may be fairlu considered impossible, at least with present
technology.
The technology point refers i.a. to the fact
that it might be different if all were on line via a webcam while
talking, and in real time, as in real conversations. But even then it
will be very difficult to have most or all noses on an extensive forum
for ME-patients from allover the world, of nearly all ages, and with all
manners of backgrounds and educations, and also with many different faiths and
sets of political beliefs, point all in the same direction.
But then a partial solution is as given: While an
ME-forum is not a fit place to do advocacy from an ME-forum is a fit
place for advocates to advocate some, to explain some of their points of
view and ends, and to refer to their sites for more for anyone
interested, and an ME-forum also is a fit place to exchange information
about ME, learn things, meet people, and make friends.
(***)
2.3. On changing ME-F
This is another repetition with some alteration.
It seems to me that the present administrators of ME-F are not fit for
the job, and therefore that the persons on ME-F who were
somebody on PR-F - because they could and did write, and made sense -
should stand up to their incompetent administrators; remove them, e.g. by buying them out,
if necessary, as the fair price can't be high, and as this is the
friendly and polite way: "You tried and failed; make room for others in
the interest of all"; replace them by a better set of administrators and
moderators; and then try to refound it, this time by doing what was
the original intent by the beginning of June: Lay the foundations for a
good set of rules, ends and regulations for a good forum for and by
patients with ME, predominantly interested in furthering biomedical
research into ME, and having done that try again.
It will also be necessary to remove some
of the loudmouths and wackos, but then these too should be able to roll their own forums or
sites, instead of abusing others on sites they did not create themselves,
for no other clear purpose that I can see, as a psychologist with 32
years of ME, by medical attestation also, than the joys of abusing others
while denying on does it, or impose their own view on many others by
screaming louder and more impertinently, just as in politics.
From my point of view, it is a pity is that on the moment there is quite an amount of real talent
with real ME that has been effectively locked in on ME-F by the rantings and ravings of
especially Wildaisy aka Pamela Carter, Master Since aka CFS_since_1998,
and Awol, V99 and a handful of other trolls or disturbed persons, and
indeed maybe also some who simply can not or do not want to control their
tempers or (maybe) are simply too stupid to see further than the end of
their own nose and egoistic desires.
2.4. A place for rational scientific ME-advocacy
I do think that it's about time for a better forum or for something
new... and in fact the new thing that may be worth trying to set up I
have mentioned before:
The Daily ME
a daily electronic paper written by 4-40 people who wrote best on
PR-F, and who are all known to be almost certainly all really ill and really
capable, which is set up like a daily paper for persons with ME, by
persons with ME, and where the
staff of the paper is closed for all but those 4-40 (who may
later elect others), but where anyone can leave a comment on what is in
the daily.
Thus, it is much like a Blog, including comments, but it is written by
4-40 of those who have proved themselves to be personally reliable,
capable and trustworthy, while keeping out all trolls, all false
pretenders, all incompetents and all disturbed ones.
Also, it is noteworthy that it is, with a closed set up and some
clearly worked out ends, rules and procedures not necessary that those
involved agree on all things, provided they agree on the ends, rules and
procedures: It is not necessary to speak with one voice or one mind, and
indeed better not, provided the different voices and minds are rational
and willing and able to cooperate reasonably.
This probably is the best and indeed the only way - with internet
as is - to get a Real Science Advocacy Place for ME and get the patients' voices heard while preventing trolls
taking over the whole setup and/or fucking up ill people who stand in
their way or dare protest.
It requires some organization; it does not need to be a strict daily; the
name may be other - but this seems to me, with present
internet-technology, the best bet to get a place from whence intelligent
persons with ME can do intelligent advocacy for persons with ME and for
getting real research and real research funding.
3. The rant for today
From my favourite Book in the Book of Books, King James Authorized
Version:
1 To
every thing there is a season, and a time to every purpose
under the heaven:
2 A
time to be born, and a time to die; a time to plant, and a time to
pluck up that which is planted;
3 A
time to kill, and a time to heal; a time to break down, and a time
to build up;
4 A
time to weep, and a time to laugh; a time to mourn, and a time to
dance;
5 A
time to cast away stones, and a time to gather stones together; a
time to embrace, and a time to refrain from embracing;
6 A
time to get, and a time to lose; a time to keep, and a time to cast
away;
7 A
time to rend, and a time to sew; a time to keep silence, and a time
to speak;
8 A
time to love, and a time to hate; a time of war, and a time of
peace.
(...)
19 For
that which befalleth the sons of men befalleth beasts; even one
thing befalleth them: as the one dieth, so dieth the other; yea,
they have all one breath; so that a man hath no preeminence above a
beast: for all is vanity.
20 All
go unto one place; all are of the dust, and all turn to dust again.
21 Who
knoweth the spirit of man that goeth upward, and the spirit of the
beast that goeth downward to the earth?
22 Wherefore
I perceive that there is nothing better, than that a man
should rejoice in his own works; for that is his portion: for
who shall bring him to see what shall be after him?
(From: Ecclesiastes 3)
