DeMeirleir Home Test for ME/CFS

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

  1. 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.
  2. Forebearance

    Forebearance Member

    This is a big surprise to me!
    Can it really be true?
    Wow, if so!
  3. Rafiki

    Rafiki New Member

    the biggest one being:

    If his thesis is correct.

    We'll see.

    Eyes crossed,
  4. pluis

    pluis New Member

    Thanks for posting!

    I knew something was coming as I spoke with De Meirleir at the Reno conference for a couple of hours. I think we might get more news in June.

  5. simpsons

    simpsons Member

    Have asked for permission to repost and will post as soon as i get permission

    have seen the research paper posted and its true!!!!!!!!!!!!!!!!!!

    This snowball that is the ME movement is just gaining momemtum
  6. skeptik2

    skeptik2 Member

    you are so right, simpsons!

    How apropo that this is coming out today; discrediting Reeves from here to he** and back!

    Bet the co. that makes the urine test won't be able to keep up with the demand...hope they are ready!!!

    Where do we go to order it? When?

    Love ya!
  7. skeptik2

    skeptik2 Member

    Hope you're doing well..

    WHAT "specialists" could we go to? They are all naysayers here in the U.S.!

    This had better make the world news, darn it!

  8. outofstep

    outofstep Member
  9. Rafiki

    Rafiki New Member

  10. DavidJ.

    DavidJ. New Member

    so what if the test is positive? what kind of drug do i have to take? maybe something his company produces? and yeah: which specialist should i go to, when the test is positive

    i have hhv 6 and ebv and its proven , so thats the cause of cfs in my case .

  11. Rafiki

    Rafiki New Member

    I have HHV6 (active) too and have had extraordinarily high EBV titers during my illness.

    However, I doubt that these are the "cause" of my illness as almost everyone has HHV6 and EBV but their immune systems can keep them in a dormant state.

    Something seems to happen to us which prevents us from being able to keep these ubiquitous viruses under control.

    All the best to you,
  12. pluis

    pluis New Member

    At least you can take a test to determine if you have CFS. It will also remove a part of your doubts. This is breaking news!

    Your HHV6 and EBV could be a result of the disease..
  13. denis321

    denis321 New Member

    Simpsons, do you have the reference? Quick browse of website doesn't yield reference.

    I'm suspicious of De Meirleir because of his commerical interests in labs, etc.

    Even this would be less of a concern if there was good scientific support for his work. I read the original RNAase-L papers and was not impressed. Small sample of subjects. And re: the other thread about Ampligen, wasn't De Meirleir involved in this in Belgium and yet I hear very little about it.

    Perhaps that test is beneficial for some people but it didn't really help me. If De Meirleir has helped you, I'm happy for you but I want to see more solid support.

    RE: HHV-6 - there are two types. HHV-6B is the common one, found in healthy people. HHV-6A is the one being investigated in CFS. Current commercial tests like IgG do NOT distinguish between the two. Specialized research lab tests in one study show in healthy folks, more than 90% have HHV-6B but less than 20% with HHV-6A.

    Even these research tests do not distinguish between active and past infection so healthy people could have had past exposure with HHV-6A (and a positive test) and not an active infection. The question of why some get the disease while others don't is an important one but this is not exclusive to HHV-6. Many infectious diseases can infect a lot more people than they cause illness in - i.e. these folks become "carriers" .
  14. TigerLilea

    TigerLilea Active Member

    Has Prof de Meirleir's theory been tested in the medical community by other researchers? Is it medically significant if we do have high levels of hydrogen sulphate in our urine? Are the urine results significantly different from other people's results who do not have CFS. I'm always leery when the same doctor also markets the tests through their own companies.

    And, if we do get the testing done and are found to be positive, then what happens next? Is there a cure? Is there something that we can take, if not a cure, that will give us a somewhat normal life (insulin for diabetes; Armour for thyroid, etc.).

    Does Prof de Merleir say what type of specialist we should be referred to?
  15. simpsons

    simpsons Member

    hi he is lecturing at the invest in me conference tomorrow so if anyone on board is going to that they can tell us all about it

    untill i have permission to repost then i can say nothing. sorry:( :(

    Yes kenny was one of the first to work with ampligen is my understanding. he has one of the best reputations in the industry.

    He is to my understanding working with the whittlemore peterson institute, but anyone may feel free to correct me on that. i am only fit for sleep right now as the cfac meeting has exhausted me just watching. know you.ll understand

    there is a post about the invest in me conference on th 29th so maybe if you ask there someone may be going and can report back to us in full detail

    you can also advance book a copy of the dvd from their website (invest in me) so as soon as it is published you can watch his lecture in full.

    I promise i will post as soon as i am allowed
  16. cfsgeorge

    cfsgeorge New Member

    Dr de Meirlier has done so much for CFS/ME especially in the research department that i am very hopeful for this urine test and his theory of CFS. He has written and summarized all the scientific data in the chronic fatigue journal. He has just explained everything we always knew about CFS/ME by putting it all together in the "big picture." I believe in him. Why wouldn't we believe in him? His lifelong reputation is on the line if this is a $cam. There is no way he would intentionally hurt the CFS/ME community. Yes, in the end, his theory will be proven or disproven by his peers and more importantly by PWC. Until then, we should remain hopeful not doubtful of Dr de Meirlier.

    I am going to order the urine test. As it is relatively affordable, i encourage everyone that is ordering the test to order 2 urine tests. One will be for you(the PWC) and use the other as a control on anyone else w/o CFS. Does that make sense?

    I hope to end this nightmare called CFS/ME. Good luck to you all!
  17. jasminetee

    jasminetee Member

    That's a great idea to order 2 tests.

    I understand skepticism on this. I think that's healthy. Only time will tell. I have to admit, I'm skeptical of Dr. de Meirleir too but I'm also grateful that he's trying to help us.

  18. ulala

    ulala New Member

    Is it conicidence that this news is coming out at the same time that we're waiting to hear if Ampligen has been approved?
  19. pluis

    pluis New Member

    What I am actually wondering about is the measurement of this test. If you are positive would one get a value (how much H2S there is in your body?)

  20. cfsgeorge

    cfsgeorge New Member

    This looks to be a simple test or screening for H2S in the urine. It will not give you a value or number. It tells you if it's positive or negative for H2S. The shades of darkness will generally tell you if you have alot or a little H2S which should correspond to the severity of your CFS. There will be more advanced testing and measurents of H2S in the near future. It's very basic to set-up a more detailed H2S test that any biochem major could do it.

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