August 31, 2010


ME + me :  Good ME-news: Updates about 'Een Vandaag' about ME/CFS

Just as before, I continue being not well, and indeed am pretty PEM'd - exhausted - so for the moment this is just a brief piece, that only consists of some updates and links about the Dutch item in the Dutch TV program 'Een vandaag' about which I wrote yesterday, and some sitenews.

1. Updates about 'Een Vandaag' about ME/CFS
2. Sitenews

Note the first item supplies rather a lot of background, including an item by dr. Ruud Vermeulen I haven't seen mentioned by anyone else on what the most important thing is the TV-program yields (and speaking of what prof. van der Meer said in the program):

that a promiment member of the Dutch Academy of Science declared on television that an  antiviral treatment is an option for ME/CFS.

1. Updates about 'Een Vandaag' about ME/CFS

Yesterday there was an item in 'Een vandaag' (<= sitelink, Dutch) about ME, that I briefly dealt with yesterday in Good ME-news: The news that shook the world (and Jos. Here is more information about it, mostly culled from the PR-F and ME-F lists (*), and thence mostly from posts by Jemal and Rivotril.

Since indeed I am not well, I'll do it mostly in terms of points

  • The item on ME/CFS in 'Een Vandaag' on Youtube
    The item on ME/CFS in 'Een Vandaag' on Youtube - with English subtitles

    This is well done; gives all of the item and nought of the rest of 'Een vandaag'; and lacks nothing except subtitles. (Later: Jemal on PR-F supplied also a link with subtitles.) But then there is this:
  • XMRV, De Meirleir and Van der Meer on Dutch television tonight 8/30

    This is the beginning of the thus named thread on PR-F, that begins with an item by Jemal, who supplied a good translation of all of the text
  • O frabjous day! Encouraging Dutch TV?! About ME?!

    This is a Nederlog by me of May 30, about the previous item in 'Een Vandaag' about ME, that also was quite good. Here is a link to a Youtube-version of the relevant part

    Disability in ME Vs Psychiatriac denial (Dutch language) (seems removed)

    And to provide some context, here is part of an e-mail in which professor Jos van der Meer at that time declined to appear in the program:

    [ ENGLISH - professor Van der Meer's immortal rational and reasonable words:]

    "Prof. Van der Meer, the leader of the Nijmegian
    ME/CFS-group, does not feel much for an interview in
    One Today; this because of the fact that you also
    have the plan to let mister Kenny de Meirleir speak.

    He is known in medical-scientific circles as somebody
    who does not take proper care with the truth, to
    put it carefully."

    For more see my O frabjous day! etc.

  • Professor van der Meer back in 2001 on Dutch TV

    This was supplied by Jemal on PR-F, with this quite apt comment (link edited by me and some formatting supplied):

    • van der meer is the founding father of this therapy in the Netherlands, although he is an internal medicine doctor. he is the dutch equivalent of wessely and reeves.

      he was in a dutch tv program back in 2001 on ME:

               Professor van der Meer back in 2001 on Dutch TV

             "Cognitieve gedragstherapie is de enige bewezen werkzame therapie"

              "Professor Jos van der Meer, internist in het Radboud Ziekenhuis
               in Nijmegen, is stellig: met CVS-patiŽnten is lichamelijk niets mis. "

      translated these sentences mean:

               "CBT is the only proven therapy that works"

                "Prof Jos van der Meer, internal medicine doctor in Radboud hospital in
                 Nijmegen, is absolutely sure:
                 with CFS patients is nothing physically wrong"

      he also was member of the commision that made the dutch guidelines for ME/CFS:

      forced CBT. so if you dont do CBT in the netherlands this will give you a lot of social security/welfare payment problems.
  • More on Professor Jos van der Meer's medical and ethical excellencies:

    Here is another comment by Ritrovil (dotted by me):
    • the week after the science paper he said it was a shame/ unbelievable that it was published in science, and that he was quite sure that they would prove that it was wrong (like reeves also did)
    • after that he called wpi unprofessional and said there was contamination in their lab (bacause they tested some of the kuppeveld samples positive)
    • in a podcast, also with wessely,  he said: i'm done with this (xmrv).
  • Dr. Ruud Vermeulen of the CVS Centrum Amsterdam

    The link in the present title is to an item in the Dutch wordpress.org blog of dr. Vermeulen, who wrote yesterday evening there, in Dutch, with English translation following, with the title of the item above it

Het zit dus niet tussen de oren

Vandaag was het zover! Hulde aan professor Jos van der Meer, die als goed wetenschapper accepteerde dat de kans op een virale infectie als oorzaak van CVS/ME nu zo groot is dat hij zich daarachter schaart. Hij nam afscheid van de fantasie dat chronische moeheid een psychische oorzaak heeft. Daarmee marginaliseerde hij de rol van de cognitieve gedragstherapie tot een hulpmiddel bij het omgaan met deze ernstige ziekte.  We kunnen nu verder met samenwerken aan een goede diagnostiek en een echte behandeling.

which is in English

So it is not between the ears

Today was the day! A tribute to Professor Jos van der Meer, who accepted  as a good scientist that the risk of viral infection as a cause of CFS / ME is now so large that he will support that. He took leave of the fantasy that chronic fatigue has a psychological cause. Thereby he relegated the role of cognitive behavioral therapy to an accessory tool when dealing with this serious disease. We can now continue to work together on making good diagnoses and giving  real treatments.

There is some - Dutch - discussion in the CVS Centrum link from which I lift the last bit, which is dr. Ruud Vermeulen summarizing what he sees as the main result that the item in 'Een Vandaag' helped achieve, first in Dutch, then translated:

het belangrijkste van gisteravond was dat een vooraanstaand lid van de Nederlandse Academie van Wetenschappen op de tv verklaarde dat antivirale behandeling een optie is voor CVS/ME.

which is in English and compare professor Wessely and his status in England, while counting with the fact that professor Van der Meer found himself suddenly on the wrong side of prof.dr. Alter, the NIH and the FDA:

the most important of last night was that a prominent member of the Dutch Academy of Science declared on television that an  antiviral treatment is an option for ME/CFS (**)

  • About the status of 'Een Vandaag' in The Netherlands

    Finally, since Holland is small; since I do not have a TV myself since 40 years; and since the question has some merit and was posed and answered by Jemal on PR-F:

    Is Een Vandaag a popular show in The Netherlands? Influential? What sort of show is it?

Well... I think that should answer most questions by foreigners, and it also provides some background on professor Jos van der Meer, whom I yodelled to in my ME + me : Having ME in Holland, Paradise of Homo Soccer Sapiens + Radboud Ziekenhuis Nijmegen - Natural Home of the Lying ProcessTM  that I can't believe he did NOT see and savour deeply, because I told dr. Vermeulen, who is my ME-specialist about it, and my anger with professor Bleijenberg and Van der Meer, which ought to be a bit relevant for the gentlemen, e.g. because of what I wrote in my Meditation on me & ME.

2. Sitenews

The sitenews is mainly that I intend to do some overhauling of the site as soon as I got the energy (the results will mostly not be really visible, but are necessary); that I intend to produce a new zip version of the side for downloading (the existing one is about a year old) and that yesterday I passed the 100.000 mark for different visitors of my site in Denmark this year, that is within 9 months, while having this year so-far over 615.000 hits of over 475.000 (close to half a million) pages.

And that is just for the site in Denmark. The Dutch mirror probably scored better, but is less good in several respects for me, such as getting statistics and getting qualified help (***).

For a controversial, difficult site mostly given to philosophy, logic and ME that does seem quite good, and indeed I have visitors from 60 to 80 countries every month.

P.S.  And that is where it stands on August 31 at 18.25 local time. Those who want some news about PR-F and/or ME-F should check out my first note (*).

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all. I don't know yet, but if there is no Nederlog, now you know the reason.


As to ME/CFS (that I prefer to call ME):

1. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

3. Hillary Johnson

The Why

4. Consensus (many M.D.s) Canadian Consensus Government Report on ME (pdf)
5. Eleanor Stein

Clinical Guidelines for Psychiatrists (pdf)

6. William Clifford The Ethics of Belief
7. Paul Lutus

Is Psychology a Science?

8. Malcolm Hooper Magical Medicine (pdf)

Short descriptions:

1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
   "it is wrong always, everywhere, and for anyone, to believe anything upon
     insufficient evidence
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.

    "Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
     - (Shelley, "Prometheus Unbound") 

    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)


See also: ME -Documentation and ME - Resources

P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.

(*) In case anybody wonders, here are two remarks, about my non-membership of PR-F and my being banned from ME-F.

First, I am not a member of PR-F and do not write on it or for it under any name since May 6. Also, I have never been banned or suspended from it. So none of the Dutchmen writing there is me, and indeed I know none of them, and all I ever wrote for PR-F I wrote as Maarten Maartensz, and is now to be found here .... still in need of some better editing.

But I can read PR-F for the most part (there no is a members-only section I can't access) and do so as far as threads or posters that interest me are concerned, and I have time, energy and interest.

Second, this cannot be said about ME-F, for which reason Jace aka Jane Clout, incidentally moderator at ME-F, did not write the truth today on PR-F, where she wrote today, incidentally in the thread Why was awol banned?   

The mecfs forum was formed after a lot of valuable members were banned here. We hung out in a liferaft (read Koan's googlegroup) and some of us did some terraforming, and created a habitable planet for us to land on.

There we have disagreements occasionally, but they are resolved in an even-handed manner. Some people decide mecfs is not for them - that's fine. No-one has been banned. Yet. Early days. We focus much more on the science, and on understanding the science.

I think Jane Clout wrote the thing that was not quite knowingly, for she can hardly have missed that

(1) I have been banned from ME-F on July 18, with Jace aka Jane Clout as moderator;
(2) That on ME-F "No-one has been banned" is a lie:

(3) Others have been very crudely and impertinently pestered away from ME-F - by especially Awol and Jace, both persons with much energy, little real knowledge about ME or real science, but very meddlesome
(4) I wrote about this, including the above screengrab, on July 19, in a polite letter that - OF COURSE! - never was answered by CFS since 1998, Patricia Carter, Jace or anyone on ME-F (in any public capacity: I have my private contacts), On a sad misunderstanding of me;
(5) Jace aka Jane Clout should know and very probably does know this very well, as she should know and very probably does know very well about my Unsere ME-Fuehrerinnen und ME-Fuehrers, for which I was banned by CFS since 1998, Patricia Carter and Jace aka Jane Clout on July 19, without having ever gotten any reason, justification or whatever, and without any access to anything there, not even the nominally public part, for CFS since 1998, Patricia Carter and Jace aka Jane Clout must have MUCH to hide for a rational critical but also satirical mind like mine, with a site like mine, and a relevant background and excellent degrees like mine - from which I infer once again that
(6) Jace aka Jane Clout knowingly and publicly lies, and CFS since 1998 and Patricia Carter rather have Nietzschean neurasthenics like Eric_Johnson_from_I&I and Awol on board, than people like myself or indeed ME agenda, whom Jace, Awol and CFS since 1998 pestered away, in a very crude, crass, impertinent way also.

So once more:

The administrators and moderators of ME-F are incompetent and should remove themselves, for they do not help but hinder people who are genuinely ill with ME and genuine proven advocates for people who are genuinely ill with ME.

And it's a shame that they keep indulging their meddlesome incompetence, and that they now do it with gross - and stupid, for easily thus proven - lies.

There are more lies in what I quoted, and yet more lies in what Jane Clout wrote on PR-F, but I won't bother except registering it and the fact that a neurotic like Awol merits a long thread, while the dismissal of persons like myself or - much less controversial - ME agenda only merit nothing at all on ME-F and lies by ME-Fs moderators on PR-F.

Finally, and once more:

ME-forums as are, with present technology, wherever they are, are NOT fit for organizing advocacy, because of the presence of trolls and the average level of contributions, including the need for ill and/or advocates to read through interminable posts by members who don't know the relevant science or lack the relevant background knowledge or lack the capacities, but who nevertheless write post after post after post.

ME-forums as are, with present technology, wherever they are, are fit for meeting people, exchanging information, and getting to know some folks with 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 did - but trying to organize an ME-forum as a site for advocacy may be considered impossible, at least with present technology. (And the last 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. 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, with all manners of backgrounds and educations, with many different faiths and sets of political beliefs, point in the same direction.)

(**) As the reader probably saw I switched "ME" and "CFS" when translating "CVS/ME". My reason is that "ME" is my preferred name for the disease I have, since this seems to be still closest to the facts and has a tradition since 1969, and is under that name in the World Health Organization's specifications, definitions and recommendations. My own reason to add "/CFS" is merely that "CFS" unfortunately has become a common name for the disease, because of the efforts of psychiatrizers like Van der Meer and Wessely, and that therefore, in these days, one must enter it for search-machines.

(***) The Dutch mirror calls itself "xs4all.nl", which indeed was an excellent provider when I started with it in 1996. Its owners sold it and the name to KPN, that is Dutch Telecom, in 2002, and ever since that it turned out awful, for this knowledgeable user. Meanwhile, it still is most popular in Holland, which is a tribute to the computer illiteracy of most of its current clients and also to the power of advertisement. But since 2002 it is KPN, and since 2002 the "helpdesk" is so awful it cannot be safely called - and if you get someone talking to you, eventually, he or she hardly knows anything, and is totally unwilling to refer to one in the company who is not ignorant. Ah well... the explanation is in my Spiegeloog-columns, for cognitively non-challenged readers of Dutch.

O, and the help by the Danish provider, in stark contrast, is and has been good since 2004. So it's not between my ears, to end with a reference to Vermeulen's diagnosis.

Maarten Maartensz

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