Medical Mystery ME/CFS solved

Discussion in 'Fibromyalgia Main Forum' started by pluis, May 28, 2009.

  1. pluis

    pluis New Member

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    Medical Mystery ME/CFS solved

    To day May 28th at 11 A.M., the members
    of the press are invited at a press
    conference, which will be held at the Ritz
    Hotel in London.

    Belgian scientists (Brussels) have
    identified causes and mechanisms of the
    medical mystery Myalgic Encephalomyelits
    (ME)/Chronic Fatigue Syndrome (CFS).

    In light of the nature of the discoveries and
    its consequences for public health, the
    scientists who will be present at this press
    conference felt obliged to inform the public
    prior to publication of the results in a
    medical journal.

    Professor Kenny de Meirleir MD, PhD,
    (Professor at the Vrije Universiteit Brussels and
    Director HIMMUNITAS Foundation Brussels)

    would send me his speech for this press conference,

    ME: End of an Era of Medical Negation

    But there were some changes in the last days and
    they will use slides now; instead of the address, I'm
    allowed to post now an 'uncorrected' abstract of the

    *Research on extremely disabled ME patients
    reveals the true nature of the disorder*

    He will also speak about this subject at the 4th
    Invest in ME International ME/CFS Conference in
    London on 29th May.

    If I remember well, the ME/CFS urine test, of
    which is spoken below, will come on the market as a
    "do it yourself test".

    So you know in a few minutes, if you are an ME/CFS
    patient or not.

    Jan van Roijen


    Kenny De Meirleir(1), Chris Roelant(2), Marc
    Fremont(2), Kristin Metzger(2), Henry Butt(3)

    Research on extremely disabled
    M.E. patients reveals the true
    nature of the disorder

    (1) Vrije Universiteit Brussel & HIMMUNITAS
    foundation, Brussels, Belgium
    (2) Protea Biopharma, Brussels, Belgium
    (3) Bioscreen & Bio 21, University of Melbourne,
    Melbourne, Australia

    In this study we compared totally bedridden patients
    (Karnofski score 20-30) with less ill ME patients
    (Karnofski score 60-70), family controls, contact
    controls and non-contact controls.

    EBV, HHV6 and Borna virus titers were not different
    in the three groups. Plasma LPS distinguished the
    groups, with the highest values in the bedridden

    LPS is a strong activator of the immune system and
    high plasma concentrations suggest a hyperper-
    meable gut. There are many possible causes for this,
    but a lack of 'local' energy production is one of

    In a separate study (In Vivo, in press) we observed
    intestinal overgrowth of Gram positive D/L lactate
    producing bacteria which are also known to produce
    H2S in presence of certain heavy metals as a survival
    defence mechanism.

    We therefore hypothesized that the urine of the
    bedridden ME patients would contain more H2S
    derived metabolites than the less ill and the
    controls. Using a proprietary simple color change
    urine test this hypothesis was confirmed.

    In the extremely ill, urine added to the yellow color
    reagent immediately turns dark blue, whereas
    in the less ill the reaction is slower and in the
    controls no reaction occurs.

    Being a potent neurotoxin, H2S induces photophobia,
    intolerance to noise, mitochondrial dysfunction by
    inhibition of cytochrome oxidase and depresses the
    cellular immune system and induces neutropenia
    and low numbers of CD8+ lymphocytes.

    Its effects, at least in part explain the clinical
    condition of the severely disabled ME patients.

    Furthermore the effects of the bacterial H2S induces
    increased ROS production by the liver and
    retaining of heavy metals particularly mercury in the

    The latter is also neurotoxic, induces apoptosis
    and interferes with the aerobic metabolism. Chronic
    increased production of H2S by intestinal bacteria
    leads to build-up of mercury in the body as proven by
    a Zn DTPA/DMPS challenge test.

    Finally in 20% of the ME patients (in the severely ill)
    we found using a special luminescence technique
    aberrant prions which also interfere with the energy

    These patients have gone on to develop A.P.D.
    (aberrant prion disease - patent pending). These
    aberrant prions give rise to a transmissible disorder.
    10% of the A.P.D. patients have very high prion
    counts in their saliva and can directly transmit it to

    APD patients can transmit these proteins via blood
    and likely also through sexual contact which then can
    give rise to slowly developing aberrant prion disease.

    In a separate experiment 40 healthy blood donors
    were screened for A.P.D. One individual tested very
    positive, indicating that apparently healthy
    individuals can already be carriers and that blood
    transfusion carries the risk of transmitting A.P.D.

    In conclusion, ME is a disorder which is caused by
    increased endogenous H2S production. For the latter
    many factors can be present.

    Because of the effects of H2S in the body a chain of
    events will develop which have more and more
    negative effects on the aerobic metabolism and
    depression of the immune system leading to more
    and more infections and reactivation of endogenous

    In its final stage aberrant transmissible prions
    develop which put the patients in a total energy
    depleted state.


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  2. acer2000

    acer2000 New Member

    So where might one get this H2S test? And if you test positive, what do you do about it? Also, is it different than the Hydrogen Breath test that is used to test for intestial bacterial overgrowth?
    [This Message was Edited on 05/28/2009]
  3. cfsgeorge

    cfsgeorge New Member

    This is huge huge news if he is right. He has always been at the forefront of CFS research and i've learned more from him than from anyone else. Is the mystery of CFS finally solved? If so, the "cure" is already here. I can't wait to get my life back :)
  4. pluis

    pluis New Member

    Me too, I want my life back. I am trying to get some more news as the day progresses. I know the Prof. will speak tomorrow at the conference, and June 12th in Norway.
    [This Message was Edited on 05/28/2009]
  5. misskoji

    misskoji Member

    For posting this. Here's hoping!
  6. skeptik2

    skeptik2 Member

    Prius, could you add "De Meirleir:" to the front of your Post Title; more people would read and respond, as we know this name!

    Does anyone remember, years ago, Australian researchers said ME patients had unusual "something" in their urine? They called it SUM 1 and SUM 2.

    Do I understand correctly? This will be said in a press conference today, Thurs. 27th? It should make worldwide news!

    The fact that it is transmissible confirms what I've said here for years; my partner got it from me! There is probably a certain "stage" of the illness during which that happens.

    BTW, for those who don't know, this is the group that has the Ampligen treatment waiting for approval from OUR FDA...supposedly this week.

    Thank you prius for posting this; it's amazing that it came out today, just as Dr. Stupid (Reeves) is working so hard to make our disease psychosocial, as in the UK.

    [This Message was Edited on 05/28/2009]
  7. Rafiki

    Rafiki New Member

    £13 home-test kit developed for ME

    1 hour ago

    Scientists have developed a £13 home-testing kit which they claim will help identify people suffering from myalgic encephalopathy (ME).

    The urine test is based on the theory that the illness is strongly linked to certain bacteria and a build up of toxins in the body.

    Experts are divided on what exactly causes ME, which was dismissed as "yuppie flu" in the 1980s.

    At a conference in London, Professor Kenny de Meirleir, who works at the University of Brussels, discussed his theory.

    He and fellow scientists have developed a simple urine test which they say identifies the presence of high levels of the chemical hydrogen sulphate.

    This chemical builds up after antibiotic use or exposure to salmonella infection, and can occur when there is too much exposure to mercury, he said.

    Prof de Meirleir's research has shown that around 90% of patients with ME also have an excess of the bacteria enterococcus and streptococcus, which he believes interacts with exposure to metals to produce hydrogen sulphate.

    Prof de Meirleir, who treats between 3,000 and 4,000 ME patients a year, said his patients had been shown to excrete high quantities of the metals copper, mercury and nickel, possibly contracted through the environment or food.

    Prof de Meirleir said his new test, produced by his company Protea Biopharma and available via its website from Monday, accurately shows whether an ME patient has high levels of hydrogen sulphate. The patient's urine turns a dark colour when mixed with a chemical agent in the test.

    "This is a test for a major cause of ME," he said. "Anyone with a positive result should talk about it with their GP and get referred to a specialist."

    Copyright © 2009 The Press Association. All rights reserved.
  8. outofstep

    outofstep Member
    [This Message was Edited on 05/28/2009]
  9. jasminetee

    jasminetee Member

    Thanks so much for this info. This sounds amazing. This might turn out to be a biomarker for CFS. I contacted them through email to try to buy a test.

  10. Bluebottle

    Bluebottle New Member

    Wow, thanks for the info - I've contacted them to buy a test too.
  11. pluis

    pluis New Member

    Yes Lumicentfeeling, I agree with you. It is sad but true. Do you think that if we vote for the European Parlement for Barroso in June it might actually good for the CFS community? I say this because his wife is diagnosed with CFS/FMS, and have been treated by DeMeirleir.. Maybe he can make a difference....? It is scandelous what happens in the UK, and also in Holland.

    The H2S theory is pretty impressive though, and I also spoke about it with an independent researcher at the conference in Reno.

  12. ulala

    ulala New Member
    [This Message was Edited on 05/28/2009]