ME + me : Good
ME-news: The news that shook the world (and Jos)
As before, I continue being not well, and indeed am pretty PEM'd -
exhausted - so for the moment this is just a fairly brief piece. ("I do as I can, not as I want.")
But it is a good piece, if brief, for it is the text of
professor Jos van der Meer of Radboud University Nijmegen, eating crow,
in the Dutch TV-program "Een
I have just seen the footage, that probably will be available by way
of the link till tomorrow evening, and will now provide
(1) the opening text of the Dutch journalist plus the
text of professor Jos van der Meer, shown speaking, apparently totally
grey-haired from the shock (?) and
(2) my English translation of it.
As I am very tired and it is quite late, I may not be able to retrieve
the journalist's name today, but if not it will be inserted as soon as I
have it. Meanwhile "Jn: " is used to refer to her, and "VdM: " for
professor Jos van der Meer, of Radboud
Ziekenhuis, Nijmegen. And please note these are just selected bits
from the beginning of the program and with Jos van der Meer, collectively
a rather small part of the item on Dutch TV.
(1) Nederlands | Dutch
Jn: Er lijkt een doorbraak te zijn in het onderzoek naar de
vermoeidheidsziekte ME. Onafhankelijke Amerikaanse wetenschappers hebben
in het bloed van ME-patienten een virus aangetroffen dat vergelijkbaar is
met HIV. Al sinds de jaren 80 wordt er gezocht naar een veroorzaker van
Groot nieuws in de medische wereld.
VdM: Wereldschokkend mag je wel zeggen.
Jn: Wat is er zo wereldschokkend aan?
VdM: Wereldschokkend is dat er een controverse is ontstaan over
over de rol van een virus, een bepaald soort virus, bij het chronisch
Jn: Maar dat wordt toch al lange tijd vermoed, door sommigen
zelfs bewezen geacht?
VdM: Ja, bewezen is het dus zeker niet. Lange tijd vermoed heb
u gelijk in. Eigenlijk zolang al als we virussen kennen zijn virussen
verdacht geweest voor - als oorzaak van chronisch vermoeidheidssyndroom.
Maar tot nu toe is er nog nooit een verwerkker voor chronisch
Jn: Het virus dat nu gevonden is in het Amerikaanse onderzoek
is een vergelijkbaar virus als het HIV-virus.
VdM: Er zijn natuurlijk wel belangrijke verschillen. Er is wel
gezegd door mensen met het chronisch vermoeidheidssyndroom "Je gaat er
niet aan dood, maar misschien is dat het vervelende ervan" (**), terwijl
je bij onbehandelde HIV-infectie, daar ga je uiteindelijk aan dood. Dat
is duidelijk een dodelijke virusinfectie; dit is duidelijk geen dodelijke
virusinfectie. Maar het is wel ernstig invaliderend. En het is een
ernstig ziektebeeld. En het komt toch relatief veel voor.
Jn: Wereldwijd hebben 17 miljoen mensen het chronisch
vermoeidheidssyndroom. In Nederland hebben 30.000 mensen de ziekte.
(2) English | Engels
Jn: There seems to be a breakthrough in the research into the
fatigue-disease ME. Independent American scientists have found a virus in
the blood of patients with ME that is comparable with HIV. Already since
the nineteeneighties research has been done to find a cause for the
Great news in the medical world.
VdM: Worldshocking, you may say.
Jn: What is so worldshocking about it?
VdM: Worldshocking is that there has arisen a controversy about the
role of a virus, a specific kind of virus, with chronic fatigue syndrome.
Jn: But that has been supposed for quite a long time, even considered
proven by some?
VdM: Yes, but proven it is certainly not. Supposed for a long time -
there you are right. In fact, as long as we know of viruses, viruses have
been suspected of - as cause of chronic fatigue syndrome. But until now
there never was found a cause of chronic fatigue syndrome.
Jn: The virus that has been found in the American research is
comparable ti the HIV-virus.
VdM: Of course there are important differences. It has been said by
people with chronic fatigue syndrome "You don't die from it, but maybe
that is the bad thing about it" (**), wherease you
die if you have an untreated HIV-infection. Clearly, that is a deadly
viral infection; this clearly is not a deadly viral infection. But it is
seriously invalidating. And it is a serious disease. And it occurs
Jn: Worldwide, 17 million people have chronic fatigue syndrome. In the
Netherlands 30.000 people have the disease.
P.S. As I said, I have done this fast
and - by golly - "seriously invalidated" by a "serious disease" so-far
considered a "dysfunctional belief system" by
professor Jos van der Meer, a medical opinion, together with the
causally related (!) lack of help, support, and assistance, and attendant
discrimination, that has led to the suicide of at least several
tens of Dutch patients with ME.
Therefore - "seriously invalidated" by a "serious disease", and being
seriously exhausted - I may have made mistakes, and I am sorry I
don't have the journalist's name yet.
But I do thank the people of "Een
vandaag" (*), for they have really helped
30.000 persons and those who do help them, and done their jobs as good
More tomorrow, as it is 23.25 local time, and I now upload this.
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. 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
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understands ME is an
6. English mathematical genius on one's responsibilities in the matter
of one's beliefs:
is wrong always, everywhere, and for anyone, to believe anything upon
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
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. "
ME -Documentation and
ME - Resources
ME - Resources
needs is a Work In Progress that hasn't progressed today.
(*) The link is to the site of
"Een vandaag", and it is in the
video-frame this opens with, starting at 17 min 40 sec approx. It
contains footage of Dutch journalist; a Dutch patient Mariska, who moved
to Brussels to have her treatment with professor De Meirleir; professor
Jos van der Meer; and professor Kenny de Meirleir. But it is all in
Dutch, and it probably will be disappearing tomorrow evening.
Then again, I suppose it will be soon on Youtube.
(**) Clearly, one has to be careful with professor
Jos van der Meer, and he probably is not out of tricks. But I think here
he is more or less fair, for the passage I translate as
It has been said by people with chronic fatigue syndrome "You don't
die from it, but maybe that is the bad thing about it"
does accord with fact, uin that persons with ME indeed have bitterly
complained that maybe the disease - admitted to be serious and seriously
invalidating, by professor Van der Meer in the program and my text -
would have been seriously researched and indeed funded by more than a few
researchers and more than just a tiny bit of research funding for real
scientific research into its possible causes and aetiology, if people did
die from it as from HIV.
Well... having it now for 32 years, all without help and with much
discrimination, I can testify that, indeed, the disease is serious,
indeed it is seriously invalidating, and indeed I have not yet died from
it. Some have, though, like Sophia Mirza, and many have committed suicide
precisely because they have been discriminated and not helped.
home - index - top -