This is another brief Nederlog with just two
subjects as mentioned in the title abd an extra one that relates to
Good news about
2. On versions of CCC and ICC
3. PR-F and CFIDS on the ICC
1. Good news about
There was today a brief note on Phoenix Rising by Craig Anderson,
who assists Dr Sarah Myhill. Dr Myhill is an
English GP who since the beginning of last year has been forbidden
by the GMC to practice or was allowed only to practice in a
I wrote about her April 13 2010 as follows, to
help enlighten the GMC:
Dr Myhill is an excellent medical doctor, who has a fine rational
scientific hypothesis about the cause of ME/CFS, and who has an
excellent site that is very helpful for any patient with ME/CFS
and for anyone seriously interested in this serious, debilitating
I have learned much from her, all to my own benefit, and am
medically diagnosed by medical specialists with ME/CFS since
1.1.1979, after EBV, and receive special (experimental) medical
treatment for it at the Dutch CFS-Centrum since years.
In my view, Dr Myhill deserves admiration, support, protection
and funding for her research, because she is and does like a good
medical doctor should - unlike a part of England's psychiatrists
centred around KCL, whose theories about ME/CFS are both
pseudo-science and in contradiction with the World Health
Organisation's rulings on ME/CFS:
CFS, along with PVFS and ME, are listed by the WHO since 1992
under the ICD-10 G93.3 as an organic brain disease and are
specifically excluded from a psychiatric listing under F48
Dr. Myhill has the courage, wit and medical dedication to treat
patients with ME according to the rulings of the World Health
Organisation. She does like a good medical doctor should do.
She needs your protection, not persecution.
drs. Maarten Maartensz, psychologist.
the brief note on today's Phoenix Rising:
DR SARAH MYHIILL WINS!!
GMC CAVES IN! ALL SANCTIONS REMOVED! NO
RESTRICTIONS LEFT IN FORCE. SARAH CAN PRACTISE TOTALLY AS
NORMAL. 100% VICTORY!!!!!
ps Now the fun really begins!
Please circulate widely.
Will post full IOP determination asap
This is very good news, and I congratulate Dr.
Myhill, her assistants and her patients.
And here are links to my earlier Nederlogs about
Also, you may be interested to check out her site
It's good, and it should be able to teach anyone at
least something about ME. (Also, I do hope the material she had to
remove on order of the GMC will be replaced.)
2. On versions of CCC and ICC
On July 20 there was the appearance of the International
Consensus Criteria for ME, that I wrote about in recent
Nederlogs, with a html-version on these Criteria in 1, and my notes,
some personal, some general, in 2 :
This gave me reason to delve a little deeper into
the versions of the 2003-CCC and indeed into the versions of the
2011-ICC, since both have the problem that there are quite a few
different versions of them.
For example, I now have 5 - that is:
five - different versions of the text of the CCC-2003, that
differ considerably in size - from 280 to 609 Kb, all pdf, and
differ in content from
32 to 115 pages. I also now have 2 - that is: two -
different versions of the text of the CCC-2005 Overview, that are
textually almost the same (as far as I could see: I haven't checked
it programmatically), but one has blue backgrounds where the other
has black and grey backgrounds, and one is 967 Kb and the other 1553
What are the reasons? I don't know, except that the briefest
version of the CCC-2003, that of 280 Kb, was explicitly restricted
"for copyright reasons" - that I myself am not sympathetic to,
because (i) I have little money (ii) I don't pay things on the
internet (having had one computer hacked, and a very bad Dutch
provider I don't make payments on line) (iii) this is science and this is
medicine, and such
publications should be freely available in principle, in my view,
whereas (iv) the writers of the document, much as I appreciate their
knowledge and work, were able to acquire that knowledge and do that
work from tax money, at least for the most part.
Then again, I am not against claiming copyright -
I do the same, for all the material on my sites that is not clearly
by others - namely for keeping control of what I did write myself,
and to be able to oppose plagiarism, but as I said:
Scientific publications in fact made for the
most part by academic researchers who get their incomes in the end
from the taxes should be made freely available to the public
(and not, as the horrible Springer and other commercial
publishers do, be allowed to be kept behind a ban that's lifted only
after one has paid $37 to a commercial publishing company - for what
may also happen to be the most atrocious rot once one can see it,
such as prof. Simon Wessely on wine, for that gentleman writes on
anything, for money, and also on what I surmise is one of his
There are more reasons for the different versions
of the CCC-2003 and the CCC-2005, and I mention two good ones:
A. I guess (*) some of the briefer versions
may have been made by patients for patients, and they left out the
harder or less clearly useful parts.
This I can sympathize with, but the least
one should do in such a case is start one's abbreviation with a very
clear statement that it is an abbreviation, and that parts are
missing, and with the full text is linked or at least precisely
referred to so that one can find it, if one desires.
B. I guess (*) some of the briefer versions
may have been made to allow downloading the text over a slow modem.
This I do sympathize with, having had a damned
slow telephone-modem for 13 years.
Now, I won't bother you with details about all the
different versions, but instead provide links to what seem to me to
be the best full versions:
I. The 2003 CCC documents
ME-Consensus-Document.pdf - 610 Kb
2003-CCC full version of the Journal of Chronic Fatigue
Syndrome - Volume 11, Number 1, 2003. This is in fact the full
journal, that includes two other articles, and some editorial
material, advertisements and the like. The Journal doesn't exist
anymore, but this is the version with all of the CCC-2003 text.
All I say here is that it is good, and good to have, but that it also
takes considerable background knowledge and patience (and lack of
exhaustion!) to read all.
CanadianDefinitionsME-CFS.pdf - 529 Kb
This is again the 2003-CCC full version of the Journal of
Chronic Fatigue Syndrome - Volume 11, Number 1, 2003, but with
some editorial stuff and advertisements deleted. I provide it here
in case your modem is slow. (And no, I made none of the
versions I provide links for: I hardly ever do anything with pdf,
since I don't like proprietary formats.)
Note that I have 3 more versions, all
abbreviations of the above, and therefore all missing material. This
is my reason not to provide links.
In any case, the linked versions are - so far -
the best bio-medical treatment of ME/CFS in one file, but the
limitations are that it is mostly for biomedical researchers, and
quite a lot of rather technical text.
Then again, there is a solution if you want to
know about ME/CFS but are not a biomedical researcher:
II. The 2005 CCC documents (the brief version)
Canadian_ME_Overview_A4.pdf - 976 Kb
This is an abbreviation of the above item(s) under I. made by
Carruthers and Van de Sande, who also are among the authors of the
original, and who did this very well indeed. It is fairly long in
terms of Kb, because it contains pictures and a lot of good
formatting and colouring. This or the next item is what you want
to give to "intelligent laymen" - as the phrase is - so
they can get a good idea of
what ME/CFS is, and/or of the text in the long version. In terms of
pages it is not a long read: The body of the text is 20 pages,
plus useful intros and outros.
- 1,553 Kb
This is actually almost the same as the previous item, except that
it has blue backgrounds where the other has black and grey ones,
in quite a few places, and the pages with the references are
outlayed a bit differently.
And it takes 577 Kb more, which may be difficult when you have a
As I said: Either of these is what you want to
give to "intelligent laymen" - as the phrase is - so as to
get a good idea of what
III. The 2011 ICC documents
Let me start with remarking that all I have seen
came in different versions of the same texts, though all in pdf, and
also was and is explicitly prepublished, and in need of some
more editing, although it has been accepted for publication.
So you should realize the real thing may not be
the same as linked here and now:
I have seen at least 1 more version of each of
these two, and I repeat that in any case, also with the ones I linked
here, the reader should realize that the version that will be "the
official one" still has to appear, and may differ somewhat (though
probably not much, since the first of these two has been accepted
for publication, and the second is a part of the first).
So... having the attitude to copyrights that I
have, which is close to accepted values known as "fair sharing", and
being a patient with ME/CFS since more than 32 years, I've put the
six pdf-files on my site, and I suggest that if you are interested
in any of them to get these versions - which also maybe available
elsewhere, as they were either downloaded by me or sent to me, and I
did not change anything in them.
And I did this, because I became aware that in
fact there are several versions of each of these texts on the web,
and some are definitely less good than others, either because they
are not full versions, or because they are less well edited than
others, or because they are too long to be able to download over a
3. PR-F and CFIDS on the ICC
Finally, to provide some background and context,
here are two relevant links
(*) I must guess, for I often download stuff under
a name I provide, to find it back on my harddisk and know what is in
it without having to open it, while reading it, perhaps, much later,
while one reason to write the present text on different versions is
to notify people who are interested that there are different
versions around on the internet of what seems to be the same text,
but in fact may be an abbreviation of the text, or a later edition.