we believe absurdities,
we shall commit atrocities."
Here is the proposal I wrote about yesterday in
Let's roll our own medical recommendations
followed by A bit of trouble at the forums
Let's roll our own medical recommendations
Phoenix Forums Recommend Reading about
ME/CFS/FM (I of II)
All = (...) 
and I'm sending this in TWO parts (I and II) to twice 5 of the above
because (i) there is the 5000 character limited and (ii) there is the
forbidding me to PM to more than 5. See at the end of part II for
meanwhile I've lost hours of time over these moronifications and the
lousy editor of vBulletins. 
This is a PM relating to this plan for rolling
our own recommended readings concerning ME
What I propose doing is
A. Setting up a new category
directly below the presently first category
ME/CFS News in the Forum opening entitled ME/CFS/FM Recommended
Readings with the following kind of structure as in
ME/CFS/FM recommended reading
............. (many posts with proposals, see
- What patients should do
- Recently diagnosed
- Diagnosed a long time
- Not (yet) medically diagnosed
- Scientific diagnosing
- PseudoScientific diagnosing
- ME/CFS/FM and the law
The dots mean a.s.o. (using the forums threads
also, or to start with) (and vBulletin  messes up
my formatting: see P.S. in part II)
In Entries members of the forum can propose entries for the
Readings; motivate their entries; and discuss them.
In Readings the entries that have been approved (with a Poll
perhaps) get nicely presented with at least an intro and summary (in
ordinary English, not medicalese).
For the approval system see below under (B).
The general end is to create a list of readings, preferably on the
site so that all is available if the
site is available, of good scientifically sensible readings about
ME/CFS/FM , that can be used
(1) to educate the members by an organized
course of tested and commented readings
(2) to educate the medical people likewise
(3) to have as a standard reference for the forums and anybody
else: First look at X in the Readings if you want info about Y
(4) to gather a comprehensice rational view of ME/CFS/FM, as seen
by patients with ME who are scientificallty qualified also
(5) to use as an example and argument for CAA  and other
organisations: These seems to us the right views, or close to it
Obvious candidates for the - General section
Criterions and its
Overview (the last seems the best general
Obvious other candidates are in
But there is MUCH more, and e.g. TomK and IslandFinn 
and the fine site InvestInME have or must know of LOTS more, that is at
least worthy of consideration.
B. Doing it and making a sort of committee
I think the forum's members should be capable of doing this within a
few months, from my experiences of it. There may be some niggles about
copyrights, that may need some straightening out, but I am personally
strongly open source in science and programming, and I think rational
scientists concerned with ME should usually allow people with ME to
have their relevant scientific publications on their sites. (->
copyleft, gnu, open source)
And I think this should be done with a committee of qualified people
that makes the choice what is good enough to go into the Recommended
Readings and what not, and to approve their intros (that I think should
be there in principle, to help and clarify), possibly also based on
polls. Also, the Recommended Readings are to be special in that only
the Committee (or people authorized by these) can edit the intros to
Recommended Readings and decide what's in it and what's not. (Peer
reviewed, as the phrase is.)
/// con'd: II from II
/// con'd: II from II
It's a bit like assembling and systematizing of
The Approved Teachings of the Church of FIBs
(anyway a congregation the members of which may all qualify as a workforce
for making the Recommended Readings, and indeed for including some funny
bits as well, for that makes it all a lot nicer and spicier).
As I think of it, it is all a special effort of the members of the
to come to some common understanding on what makes sense to read for
patients and medical people, and about what ME/CFS/FM really is , and
to articulate, summarize and bring together what the majority of its
members think about ME/CFS/FM and/or the available literature about these,
for the benefit of all with internet-access.
My reason to include FM is that I myself have been diagnosed as ME/FM in
1989 by my very good G.P. who knew me well, and others on the list have
likewise argued they have an FM diagnosis. Lyme may be considered too, but
I know less about it, and am fairly certain I don't have it.
Another item in the Recommended Reading may be a section False Teachings
or Pseudo Science about ME/CFS/FM, in which Wessely et al and others
are summarized and satirized (but without honouring their texts with more
than a link and some quotations to toss and gore), and broken
scientifically to pieces.
Yet another item in the Recommended Reading may be a section DSM 5
, which is a highly relevant and dangerous
development if there is no known biomedical marker for ME/CFS/FM by 2013.
That's about it. I am available on PM and - preferably - at
email@example.com for anyone
interested.  Comments please, with the proviso that
I am fairly low at the moment, whence my replies may take some time to be
Best wishes to all of you,
P.S. I VERY MUCH want to do the required PMing by
ordinary e-mail and NOT by way of this time-consuming irritating
vBulleting limited bugshow. Writing 4Kb PM  in it
takes me all the time and 10 times the irritation for writing a 40 Kb EM.
 (Honest! I write fast, but using this 1980-ies
editor is awful, and takes much more time than writing.) And if you care
for your privacy, please use hotmail or gmail, for trying it to do by PM is
really a bummer.
P.P.S. Kim's PM is overflowing, it turns out. I'll EM
B. A bit of trouble at the forums
Part 1. Forums are places where people meet, talk and discuss,
and are therefore places that are easy breeding places for quarrels,
especially if everyone or almost everyone writing on it uses an alias, and
is unclear about his or her age, education, outlook etc.
There have been some problems of this kind on the
but the forums are - as is wise in the above sketched circumstances - are
moderated, and this works, more or less.
But ME is a disease with many problems, and three major problems are (1)
that the psychiatric schools of Wessely, Reeves and Bleijenberg have
produced an enormous amount of pseudo-scientific lies about it and patients
suffering from it and (2) that the members of these schools, especially in
the US and England must fear class-actions if there has been found a
bio-medical cause of ME, such as XMRV, that well may destroy them
financially (I am all in favour of this) and (3) that there are some
strange things surrounding ME, especially in the US and England, where
documents about ME have been classified till 2071, as if they are so
dangerous that the coming three generations should not see them for fear of
Thus, it may be fairly expected that an anonymous forum like the
are also visited by psychiatrists and others from the schools of Wessely,
Reeves and Bleijenberg, who also may enter the forums,
pseudonymously, like almost everyone (as is very wise for persons with ME
living in the US or England), and pretend they are patients, while
trying to check and try out arguments, positions and
characters, and meanwhile - being Wesselytes - having lots of
gleeful sadistic fun by pestering ill people.
Finally there is a class of people on the internet
- large, in circles of gamers - called griefers or also lamers:
The references are to the senses of these terms for gamers (and
programming nerds) but apply well to at least two members of the forum
(and not many more, as is).
This has led to some problems for me, in the form of a totally
contemptible private mails, clearly designed to grief, clearly by a
scientific lamer posing as a scientific light, about which I have said
nothing until yesterday, when I complained about it with the owner of the
forums after the lame griefer struck again.
So far this has not been clarified, and if necessary I'll do my own
exposing on thisn place, for one of the problems of the moderated
Phoenix forums is
that one may not say the sort of things I just said, on the forums, about
somebody else on the forums, however clearly a lamer, and however clearly
but cleverly grieving.
Part 2: And here is a post I just wrote for the forums relating
to the present subject:
Originally Posted by leaves
I agree more than not, but I am one of the few on the forum with his own
site (since 14 years, also), while I use an alias for a reason that has
little to do with ME but with being threatened with murder in Amsterdam by
Amsterdam drugsdealers protected by the Amsterdam authorities (who protect
rich drugsdealers much rather than poor ill taxpaying citizens). Also, I
have a diagnosis of ME/FM since 20 years, am ill since 32 years, and am
being treated by a specialist on ME since 5 years.
Not only that: it is relatively easy to prove that I am who and what I say
I am, apart from my last name, that is not "Maartensz", but that I use
because it has been in print for me for over 20 years, and I needed it 20
years ago to write the truth about the decline of the universities, namely
without being removed from it a fourth time for speaking the truth.
Now to the point:
We are all patients here, living in a hostile world in dire need for
a safe, tolerant and supportive haven where we are accepted as we
I don't believe this is true. There are some - very respectable and
likable - people on this forum who are not patients, and there are also
some people on this forum who say they are patients but in my opinion are
not - or if they are, they really have some psychological issues,
unlike most real patients with ME (and note that I am a psychologist
among other things, and quite old, and not at all naive, nor inclined to
pretend even for a bit that I respect all human beings or that for me, wise
man that I am, "everything is relative").
One problem - damned if you do, damned if you don't - is that this cannot
be discussed on this forum without leading to grave problems, that I too
wish to avoid. (And also the forum's rules forbid saying this about
specific members of the forum, on the forum.)
So I just say this: In the context of the forum, with its large majority of
functionally anonymous people, also without personal sites to make their
stories credible, and as clearly dangerous in principle to the likes of
Reeves and Wessely, who must face a class-action if there is found a
biological cause of ME and there are organised patients-groups, it seems to
be not unreasonable to surmise that some people writing on the forums are
not quite who or what they say they are.
I have made up my own mind on this, and have written Cort about it, since I
don't want to discuss this on the forum, and since I am morally certain at
least 99% of the people writing here are honest and write the truth (as
they see it, also if I disagree with them), I am also fairly certain a few
And as I said, it seems silly to me to deny this may be the case, and
unproductive to discuss this on this forum, for which reason my koan is
P.S. How do I deal with these persons I suspect or know to be up to no
good? I sidestep them, with aristocratic contempt also - and save them for
my satirical powers on my site, if and when inclined. And that is also my
advice to others: Ignore those you believe are up to no good, or take them
apart outside the forums, if you feel like it and have the ability and a
site for it, as I do.
 I deleted their names here, because I haven't
asked them, and also related to A bit of trouble at the forums.
 vBulletins is the producer of the software
and their software is neither free nor open source, and so far produced a
reasonable interface, that I mostly know from other forums, that are
freely available as open source, with some added frills, that are useful
for something like the
but also with an amount of bugs that simply should not be present in
commercially released closed source software and with a number of
"features" that are just awful, such as an editor for one's texts to send
to it that would have been considered clunky and stupid in 1990,
including such idiocies as restricting private mails from members to
members to 5000 characters (as if - say - 64 Kb is anything on today's
computers running internet).
This has made my presence on the
remarkably more difficult then it could be, for the reason expressed in
Writing 4Kb (private mail, this awfully
troublesome and backward editor) in it takes me all the time and 10
times the irritation for writing a 40 Kb e-mail (for that can be simply
written in html).
Writing anything in this editor is a punishment and an irritation, and
something as clunky and backward and bugged as this should not be in
commercially released software. Period.
The piece of text that is the main content of this mail took me at
most 15 minutes to write - and 2 hours and 15 minutes to finally send,
after reformatting it into two parts; loosing parts (I am now used to it
so make a copy outside this editing shit as soon as I wrote anything in
it, and only therefore did not give it up altogether).
 This is just an outline of a few parts of a
proposed folders-structure, which here is properly indented, as can not
be done in the vBulletin's execrable editing horror.
It's also so stupid as to use non-html coding and not to have a basic
html-parser, so to write bold, italic, colored what have you text you
must first learn the vBulltetin non-html encoding, that then makes html
from it. (Also, it is arbitrary and stupid: To get bold text you have to
enclude the text within "[b]" and "[/b]", which is not explicit but brief
- but to quote something you have to enclude the text within "[quote]"
and "[/quote]", as if one could not figure out what "[q]" might mean.)
Again, there is no html parser: The stoopid editor thingie cannot read
simple html (or it can read it but does not encode it, for it needs its
own unique vBulletin encoding).
 These are the proud makers of the editing horrorshow
described in the previous notes. I note again that almost the same as
vBulletins offers for money in closed source is available on the internet
in free and in open source.
I disrecommend vBulletins strongly, having worked several years with
the free and in open source competition that looks the same and can do
almost the same and did it wholly without problems.
 ME = Myalgic Encephalomyelitis; CFS = Chronic
Fatigue Syndrome; FM = Fibromyalgia. None has a bio-medically widely
accepted explanation, and the symptoms used to define them overlap. My
excellent G.P. diagnosed me with ME/FM in 1989, because of the
uncertainty of the diagnosis, and because I had and have considerable
muscle agues (= myalgia).
 CAA = CFIDS Association of America, in which CFIDS
= Chronic Fatigue and Immune Deficiency Syndrome, one of the many names
for ME (not as good as "ME", but better than "CFS").
 TomK and IslandFinn: Two
members of the forums with excellent skill in finding documentation. TomK
also is a great advocate for patients, which is a job one should not
underestimate: It takes great patience, persistence and argumentative
skills, and is rarely rewarded, neither in money nor in kindness. (Also,
while I can write, I am not fit for this, for I am too impatient for it.)
 Lyme disease is another disease with symptoms
similar to ME/CFS/FM. It's a virtual certainty that I don't have it, for
my ex and I got ill in midwinter with EBV = Epstein Barr Virus, a
well-known beginning of ME, but not of Lyme.
Also, my personal opinion is that while many with one of
the diagnoses ME, CFS or FM will turn out to have the same disease, once
the cause has been found, Lyme is something else. Indeed, its aetiology
and cause are known: The problem is mostly that Lyme is hard to
 DSM = Diagnostic and Statistical Manual of
Mental Disorders, use by the APA = the
American Psychiatric Association. It is used where Western medicine
is used for diagnoses and is supposed to include all currently recognized
mental health disorders. The current edition
has the Roman adfix IV; the new one with the Arabic adfix 5 will appear
in 2013, and seems to attempt to reclassify all diseases as having a
psychological and a somatic side, and to attempt to classify all diseases
that have no known established somatic side as a psychiatric ailment of
some kind, of a - as the term is - somatoform kind.
For me, in scientific principle, and wholly apart from
ME: This is back to the Middle Ages, back to Soul Shrinkers, and back to
fraudulent pretentious pseudo-science, but I do understand the
urgency of the APA: They are in it for the money, and boy o boy, what will
there be lots of money from patients with "somatoformic ailments". It is
psycho-quakery, in total variance with real medical science, that is
concerned with the body only, and leaves the soul to theology,
bagwanites, and as subject for preaching in churches.
Also, still wholly apart from ME: This is a frightening
prospect for anyone, for the chances are considerable that when this gets
in place, everyone who does not belong to the social Úlite with the money
to afford real medicine and real science, will be saddled with a
psychotherapist or two they first have to convince that their symptoms of
cancer, or what have you, are not a form of somatoformic ailment.
Here is a fine site about this latest form of psychiatric
Agenda's DSM-V. Note this is mostly for ME-patiens, but ME Agenda is
very sharp and very factual, and has many references.
 This is precisely as said: A
highly relevant and dangerous development if there is no known biomedical
marker for ME/CFS/FM by 2013. And the best bet for a biomedical marker
for ME/CFS/FM before 2013 is the XMRV-hypothesis for it. (See also
Again a little more
about ME and
where there is a lot on XMRV (for the non-medical reader, especially if
concerned with ME).
 This is my email, but having received tons of
spam, it is my firm policy
to delete all e-mails by people that I do not know already,
from my provider's site, before downloading
(personnally or from e-mailing), unless the title clearly relates to
me, my site or ME.
So IF you want to reach me by mail and have never
met me and never mailed with me before, you will have to provide a title
as indicated, and otherwise your mail will be in bitheaven before I read
on byte of it. (Also, I generally answer mail within 24 hours, or 3 days
at the longest: If you mailed me with something you want me to read and I
haven't replied, and you are sure you wrote tolerably well and for the
most part rationally, mail it again with another title.)
 PM = Private Mail. See
,  and .
 EM = E-mail.
mighty Kim can be found here and at other places. She has the very
rare property of virtually always making sense, by my lights. She doesn't
do it on purpose: she is that way. (The woman depicted is not her, unless
she and the karateka Cynthia Rothrock are - or at least look like - one and the same.)