1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Video interview Prof. De Meirleir and Dr. Byron Hyde November 09

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Frank, Feb 13, 2010.

  1. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    8
    Europe
  2. Sing

    Sing Senior Member

    Messages:
    1,364
    Likes:
    588
    New England
    Excellent. Thank you!

    I enjoyed watching the video Dance in Public Space on the bottom right. There are 3 such dances.
     
  3. ukme

    ukme Senior Member

    Messages:
    169
    Likes:
    8
    Very interesting and what a sweet interviewer as well!
     
  4. jewel

    jewel Senior Member

    Messages:
    195
    Likes:
    8
    Thank you for posting this.
     
  5. anne_likes_red

    anne_likes_red Senior Member

    Messages:
    839
    Likes:
    260
    Thanks Frank :)

    Very interesting.
     
  6. Kati

    Kati Patient in training

    Messages:
    2,126
    Likes:
    1,788
    According to him, ME doesn't exist- CFS doesn't exist. The different criterias for ME/CFS have a varying number of patients according to the definitions themselves. Each patients has to be assessed individually and find what is going wrong- and everybody is different.

    That would be a perspective a bit different than our doctors in the USA, but he seems to be very knowledgeable about what can go wrong at the cellular level- and how to test that.
     
  7. ukme

    ukme Senior Member

    Messages:
    169
    Likes:
    8
    So people aged under 30 he says he is disappointed if he can't get them better by 90%..seems like a bold statement to me. Anyone been treated by him?
     
  8. Alexia

    Alexia Senior Member

    Messages:
    164
    Likes:
    0
    Portugal
    I find that he contradicts himself a bit.. first he says that he always new there was a retrovirus causing the symptoms (after the work of Elaine De Freitas) and then later about XMRV he says that it will only be one of the problems causing some symptoms but not really the most important...or did I understood wrongly?

    Another aspect is, as far as I understood, in December (after this interview) he tested some patients and found XMRV in a high percentage of them. What test he used I don't know.. I've read somewhere that he may have used a test from the group in Sweden where they are also doing research on XMRV. This is all information that I read on internet if is true or not I have no idea.

    I also read on Dutch/Belgium forums that he's telling his patients he will test them this month, some already made appointments to have the blood taken for the test. Again I don't know which test he will use.
     
  9. Dr. Yes

    Dr. Yes Shame on You

    Messages:
    867
    Likes:
    22
    Thanks very much for the links, Frank.

    Best quote (from Hyde): "You can do a lot with half a brain!"

    I didn't expect Hyde to be so soft-spoken, but man did he take a swipe at WPI! "Contamination", "advertising"... harsh. This was from November, from the same trip where he made his other well-known remarks, and I wonder if he's softened his position since then (though I kind of doubt it).

    Also surprised to hear he doesn't treat at ALL, and sends patients out to specialists for treatment of diagnosed pathologies (I hope he coordinates and advises about those specialists' treatment recommendations, at least). He's one of the real good guys and was there at the genesis of the CFS mess (see Osler's Web, etc), but he's definitely very hard-assed, realpolitik in his views. (And he pretty much admits this.) Definitely a unique, and valid, approach, though he doesn't seem as interested in immune dysfunction as many others. My sense from reading what I could of his own writings is that he is a strict clinician, and forms his model based more on intense clinical evaluations of patients than on hypotheses drawn from research.

    Interesting also about the shrinking thyroid glands he mentions so prominently. I knew he had mentioned them before, but not in great detail.. Now how in the world am I gonna get THAT test done..:confused:!! A bit weird to hear him recommending thyroid supplements a la Teitelbaum et al (to some extent).

    As for DeMeirleir...
    Alexia, I understood DeMeirleir to be saying that he knew from DeFreitas' work that a retrovirus was somehow involved in some patients, though he may not have been aware at the time of this interview that the WPI feels this is a different retrovirus. His position on XMRV may have changed since this interview, too. I believe here he was saying that XMRV may play a key role in a subset of ME cases, but not in all, so in that sense it is only a "piece of the [overall] puzzle".

    Does anyone know if the big H2S study (300 patients) DeMeirleir mentioned in this interview has been published yet? Too zonked to go searching just now..
     
  10. Would anybody like me to transcribe this?
    I prefer to transcribe positive talks about XMRV because of the Google potential, but let me know if this would be useful to everybody and I will get right on it.

    Rachel xx
     
  11. Sing

    Sing Senior Member

    Messages:
    1,364
    Likes:
    588
    New England
    Again, these are excellent interviews of two excellent, independent clinicians and thinkers whose work is entirely with- -and for--ME/CFS patients. But there is much more coming soon, with research projects in the works , and it will be fascinating and so helpful to find out what these two doctors are thinking in another six months or year. Let's follow our main doctors and researchers very closely!

    Song

    Today, it appears, "Sing" feels like being "Song"!

    Happy Valentines, you all!
     
  12. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    8
    Europe
    I think you misunderstood Prof. De Meirleir. I think he wants to explain that he always knew that there were virusses involved. They could be important in causing symptons. But he's wondering what the cause is of the virusses being present in the patients. He doesn't fully believe XMRV is the big thing, but still is open to research in that area.
     
  13. Alexia

    Alexia Senior Member

    Messages:
    164
    Likes:
    0
    Portugal
    Frank, yes I understand your point and he's right thinking that if our bodies are not strong enough to maintain the XMRV dormant while 4% of healthy people are it's because there are underlying reasons and correcting those problems maybe allows the body to recover. I know that this disease is very complex and that Dr. De Meirleir does what he can with the existing knowledge and I really appreciate that.
    Being in Belgium are you a patient of Dr. De Meirleir?
    (I lived in Belgium for a couple of years and although I got ill there sometimes I miss your country!)
     
  14. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,166
    FWIW, I'm unlikely to watch the videos but would read a transcript so if you do one, great.

    @others: Please specify if you are talking about KDeM or BH (maybe some people could edit some of posts?) its not clear to me from some of the posts.
     
  15. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    The urine selftest is developed by professor Chris Roelant, he works for the company Protea Biopharma. I don't know anything about the study.
     
  16. acer2000

    acer2000 Senior Member

    Messages:
    613
    Likes:
    270
    I'm curious, has anyone done had a positive H2S test and done his treatment for GI issues and seen the kind of improvement he talks about? I want to take the H2S test, but I am on antibiotics right now so I can't. My understanding is that he thinks the H2S is made by bacteria in the gut, does he know which ones? And what antibiotics does he use?
     
  17. Ronan

    Ronan Senior Member

    Messages:
    120
    Likes:
    0
    Im a patient of his for about 5 years and took the H2S test when it first came out. I tested positive. I dont know about any of his other patients but i was about 25 when i went to see him after been unwell for about 3-4 years. I am still prity much the same as i was when i first went to see him, probably functioning at a slightly higher level now but nothing really significant. I know he plans to use the WPI test if he gets permission so i will be going for that soon enough i hope too.
     
  18. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    8
    Europe
    No, i'm not a patient of De Meirleir yet. I do have a first appointment with him but that's months away. first i am going to give LDN a try in combination with what i think are bacteria that make the DPP-IV/CD26 enzyme. BTW Your always welcome over here ;)
     
  19. Frank

    Frank Senior Member

    Messages:
    848
    Likes:
    8
    Europe
    The urine selftest is developed by professor Chris Roelant, he works for the company Protea Biopharma. I don't know anything about the study.
     
  20. oerganix

    oerganix Senior Member

    Messages:
    611
    Likes:
    5
    How weird that your response is attributed to me in post 15. Anyhow, thanks for the info.
     

See more popular forum discussions.

Share This Page