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Nederlog

 

August 30, 2010

 

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 vandaag". (*)

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 de ziekte.

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 vermoeidheidssyndroom.

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 vermoeidheidssyndroom gevonden.

[...]

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 disease.

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 relatively often.

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 journalists should.

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. Anthony Komaroff

Ten discoveries about the biology of CFS (pdf)

2. Malcolm Hooper THE MENTAL HEALTH MOVEMENT:  
PERSECUTION OF PATIENTS?
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.


(*) 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.

Maarten Maartensz

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