NCF Board Calls for Dr. Kenny L. De Meirleir's Resignation!

JPV

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Sorry if this has been discussed before (I couldn't find any mention of it on the forum) but I just ran across this undated press release and was curious if anybody had any more information on this situation...

NCF Board Calls for Researcher's Resignation!

The Board of The National CFIDS Foundation, Inc. (NCF) has called for the
resignation of Dr. Kenny L. De Meirleir, Professor of Physiology and Medicine at
the Vrige Universiteit (Free University) Brussel, Belgium, Board Member of the
American Association for Chronic Fatigue Syndrome, and editor of The Journal of
Chronic Fatigue Syndrome put out by The Haworth Medical Press. Dr. DeMeirleir
both a Ph.D. and an M.D. (clinician) whom, in the board's opinion, should not be
allowed to ever see patients again.

His discovery, fully covered in the preceeding article, is of such huge
significance that, had he published years ago when it was first discovered, further
research on this particular discovery could have saved many lives of patients who
are now deceased as well as many more who are battling for their very lives at this
very moment.

The board members of the NCF did not take this vote lightly, but considered
the ramifications of the work that Dr. De Meirleir neglected to publish in
peer-reviewed medical journals, although he carefully put his work into patents to
protect the monetary rewards he would get from his discovery as well as in a book
he published, Chronic Fatigue Syndrome: A Biological Approach, that was
published by CRC Press (Florida) in 2002. The book presents his research as well
as research of others on ME/CFIDS. The small hardcover volume edited by
Patrick Englebienne, Ph.D. and De Meirleir, has different authorship of each
chapter but is filled with abbreviations for a variety of molecules and receptors
that are not easy to remember without frequent reference to the full text. The
volume is very technical and should never be reviewed by those without a
moderate knowledge of molecular genetics or biochemistry. However, his
important discovery is in his own chapter and was discovered by the medical
director of the NCF. Without publication in a medical journal, it went unnoticed
and unread by most researchers in the world and did millions of ME/CFIDS
patients a huge disservice along with many wasted years.

In its discussion of the ramifications of keeping such important work
unpublished, the board members related stories of many patients whose very lives
have been snuffed out by the effects of this research discovery. De Meirleir
capitalized on the work on Dr. Robert Suhadolnik's important discovery of the
dysregulation of the antiviral RNase-L pathway that plays a central role in
ME/CFIDS. Had DeMeirleir published his work in a medical journal, others could
have combined their own discoveries and related it to this work to further what
could be a significant therapy for ME/CFIDS. Years have been lost because of
his failure to share this information freely with the research community.
Lives have been lost and that continues to this very day.

The RNase-L is a molecule that, when it is activated, degrades single and
double-stranded RNA that is both viral and cellular. It is vital to the apoptosis
(programmed cell death) that is going on in ME/CFIDS. Usually, the RNase L
molecule is carefully controlled by another molecule, the 37 KDalton, but this
controlling molecule has been degraded and can no longer control this antiviral
pathway. The results is the breaking apart (cleavage) or bending of some vital
intracellular proteins. Indeed, the discoverer of this pathway's upregulation, Dr.
Suhadolnik, once asked at an international conference on ME/CFIDS, why these
patients with ME/CFIDS are still alive! (Dr. Suhadolnik works at the School of
Medicine at Temple University. The medical school sold the patent rights of his
discovery to both Dr. DeMeirleir and RED Laboratories of Belgium. Both Dr.
DeMeirleir's co-editor and colleague of his book, Dr. Englebienne, and the owner
of RED Laboratories, C. V. Herst, Ph.D., worked for Dr. Suhadolnik in the past
before moving to Belgium.)

The board of the NCF has found the actions of Dr. DeMeirleir (and his
collaborators and partners) particularly reprehensible and ask that the AACFS
dismiss him as a member immediately, that The Haworth Medical Press fire him as
a co-editor, and that other organizations around the world that have lauded him in
the past rethink their positions carefully and join our us in our dismay of someone
who would neglect those suffering in favor of his monetary agenda. The National
CFIDS Foundation, Inc., upon hearing of this important work that went
unpublished, immediately asked other researchers to look into doing this work and
have, since, funded them for the work. It is hoped that the work will be completed
soon, published in a peer-reviewed medical journal, and we will be able to go on
and fund work that will show how this damaging activity can be blocked within
the body to stop the ongoing destruction which is the result of ME/CFIDS.

[Ed. Note: DeMeirleir also promotes the experimental drug, Ampligen in his book
as he has for years. He never mentions, however, the money he got for every
patient he put on the drug from Hemispherx Biopharma. It is known, from patents
owned by the manufacturer of Ampligen, Hemispherx BioPharma, that Ampligen
contributes to apoptosis (cell death) causing the road to malignancies to be far
shorter. DeMeirleir is now promoting Acclydine, another herbal extract that he
knows will help the patient feel a bit better but will, in no way, stop the process
that is leading toward ME/CFIDS ending up fatal. By helping just one arena that
is causing such a vast amount of damage in the body, the others go on unchecked
and the professor knows this all too well having protected his work in expensive
patents. Yet he, evidently, feels a compulsion to lighten the wallets of patients
with fairly useless drugs.]
 

Alexia

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This is very old.. there isn't any date but I think it is a couple of years old. At least I remember to have read it ages ago.
 

JPV

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This is very old.. there isn't any date but I think it is a couple of years old. At least I remember to have read it ages ago.
I figured that it was a few years old. I'm still curious as to whether there was any real foundation to the accusations and what the ultimate resolution was.
 

Athene

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That old twaddle

I read that old twadle about a year ago, but it is older.

KDM always tries to publish and share his research as widely as possible. He works in an international environment surrounded by Simon Wessley's who try to block and discredit him at every move. He has put his whole career and credibility on this line to help us PWCs. If he didn't manage to publicise information about RNase-L cleavage in the way the writer of this complaint wanted I have no doubt there were good reasons. Possibly the fact that it was someone else's discovery, for example?

And how many people have actually died of CFS as a result of not having their RNase-L cleavage measured, as this article suggests? Come off it! Even if you do get it measured, there is nothing you can do about it.

The comments about Ampligen and Acclydine are also silly. We know they are experimental, they make some people better and some worse. KDM has published his explanation of why he thinks this is. (It is all over the Canadian CFS website for those interested.) He doesn't conduct experiments on people without their knowledge.
 

Cort

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Horrible stuff in my opinion. Its quite old - they tried to ruin him - one of our top researchers, one of the few fully committed to the cause (and a nice guy to boot). He wrote an entire book on RNase L! He gave it everything he had and put lots of unpublished information in there and they do this. A very dark spot in CFS history.
 

richvank

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I, too, want to put in a good word for Dr. Kenny de Meirleir. I have met him personally and have interacted with him over a period of several years. He has made major contributions to both research on CFS and treatment of patients. I believe that his motivations are very good and that he is a person who can be trusted.

Rich Van Konynenburg
 

Advocate

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I, too, want to put in a good word for Dr. Kenny de Meirleir. I have met him personally and have interacted with him over a period of several years. He has made major contributions to both research on CFS and treatment of patients. I believe that his motivations are very good and that he is a person who can be trusted.

Rich Van Konynenburg
I was very sorry that the National CFIDS Foundation smeared Dr. deMeirleir a few years ago. I dropped my membership, and it was quite a while before I resumed. The NCF is good in many ways, and like the WPI, was founded by a mother who cares.
 
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The thing about Dr. KDM seems to be from 2003.

What is up with the NCF anyway, do they still even exist? They seem to be doing nothing.
 

Tony

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Apologies to you JPV as you were just asking a question but this thread title is lacking in consideration of one of our greatest allies. We need all the decent researchers and doctors on our side we can get. Extra publishing of this nonsense is unfortunate. Again JPV, I don't mean this personally.
It's my opinion that the NCF should take this piece off their website. KDM isn't the only doctor who has used Ampligen either and it's still used in the US.
Could a moderator change the title to something less tabloid please. Perhaps "NCF and De Meirleir" would do.
 

JPV

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Apologies to you JPV as you were just asking a question but this thread title is lacking in consideration of one of our greatest allies. We need all the decent researchers and doctors on our side we can get. Extra publishing of this nonsense is unfortunate. Again JPV, I don't mean this personally.
It's my opinion that the NCF should take this piece off their website. KDM isn't the only doctor who has used Ampligen either and it's still used in the US.
Could a moderator change the title to something less tabloid please. Perhaps "NCF and De Meirleir" would do.
Well, I'm actually a big fan of De Meirleir's work. I was just curious as to what this situation was all about. Certainly the accusations from the NCF, whoever the hell they are, are pompous, arrogant and rambling... to say the least.
 

starryeyes

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Horrible stuff in my opinion. Its quite old - they tried to ruin him - one of our top researchers, one of the few fully committed to the cause (and a nice guy to boot). He wrote an entire book on RNase L! He gave it everything he had and put lots of unpublished information in there and they do this. A very dark spot in CFS history.
Thanks for clarifying this Cort. I recall reading this in the National CFIFDS Foundation newsletter in about 2003 or so and back then I trusted the NCF and believed what they were telling us.

Athene, I didn't realize that de Meirleir is surrounded by Wesselys. He's definitely one of the heroes for CFS.
 

Tony

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Thanks JPV,
As a patient of KDM's I'm of course biased. And like you, I'm a fan of his research. It's what made me decide to see him.

I just think that we shouldn't give oxygen via a negative thread title to something that's so poor and plainly wrongheaded. Search engines pick up this stuff. I suppose now we at least have this thread to counter the argument.

Cheers, Tony...:)