NCF Board Calls for Researcher's Resignation, Dr. Meirleir

Discussion in 'Fibromyalgia Main Forum' started by wrthster, Jan 27, 2007.

  1. wrthster

    wrthster New Member

    I am posting this, after reading a prior post regarding Dr. De Meirleir. I had never heard of him before, and after reading this man's presentation at the Ft. Lauderdale Conference I was convinced he really understood what was going on and was brilliant. I guess I was right, and than came across this article after I googled his name. I would like your opinions, I think this man could and should have helped many of us, and the article speaks for itself. I can not understand why this man is allowed to speak and be accepted by the CFS/ME community based on the facts in the article. It is unbelievable.

    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.]

    The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606

    [This Message was Edited on 01/28/2007]
  2. u34rb

    u34rb New Member


    Why do you so readily believe the NCF?
  3. swedeboy

    swedeboy Member

    I Posted the same article the other day. there are a bunch of comments about it too.

    I really admire the NCF but I don't know what to make of this claim.

    What does everyone think about Dr De Meirleir's joke.

    (This is a quote from the Phoenix Rising Newsletter):

    "At one point he [Dr.DeMeirleir] joked that he was getting bored with CFS, that he’d figured it out and was looking for another disease to study."

    Interesting, becuase just last year the NCF boldly said in their Press Release that they found the Virus that supposively causes CFS. The NCF is also calling for the resignation of Dr.De Meirleir. And now Dr.De Meirleir throws around that he's "figured [CFS] out."

    Is it just a coincidence that they both essentially say they have found the missing link to CFS, and also that the NCF wants De Meirleir to step down?
    [This Message was Edited on 01/28/2007]
  4. cherylsue

    cherylsue Member

    This issue has been resolved. Dr. De Meirlier presented at the recent CFS conference. He is a well respected researcher in the field of CFS. We have so few of them, we need all we can get!

  5. wrthster

    wrthster New Member

    I agree with all of your posts. The only thing I find weird if their alleged statements are false, why didn't Dr. Meirleir sue the NCF for slander? Those type of comments can ruin someone's reputation and are very serious. If it were me, and a large organization were making false accusations, I would take them to court and go after them for slander and defirmation of character. Very strange, and rather sad because we as patients need all the help we can get, and r. Meirleir is obviously extremely bright and has a very good understanding of this illness.. I hope the accusations are false.
  6. swedeboy

    swedeboy Member

    Hopefully the accusations are false. However, maybe Dr.DeMeirleir didn't sue the NCF because they are right. Just a theory.

    I mean is the NCF still holding onto their allegations against DrDeMeirleir?

    Apparently this happened years ago. So what's the NCF's take on it now? Anyone know? Was the NCF at the Florida Conference. Did they say anything about this there?
  7. u34rb

    u34rb New Member

    Maybe Dr. Meirleir has sued the NCF!
  8. dvdav2000

    dvdav2000 New Member

    I was at the conference and saw DeMerleir. He spoke on " patient conference day ", as well as the " professional day " seeing that he is from Belgium he was not there to " round up " potential patients...

    His presentaions were " data packed " no BS, and very informative. He offered case studies of patients and treatments he is applying...

    I sensed he had a good grasp on what he is talking about.

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