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New Medical Director of WPI--Kenny De Meirleir M.D., Ph.D.

Discussion in 'General ME/CFS News' started by Sushi, Aug 28, 2013.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Interview on Nevada Newsmakers with Dr. Vincent Lombardi, Annette Whittemore and Dr. Svelana Khaiboullina M.D., Ph.D. Russian, Belgian, and WPI research collaboration.

    Scroll to 3 min 40 sec in for interview; announcement of medical director at 13 min.

    http://www.nevadanewsmakers.com/m/video2.asp?VID=1764
    snowathlete, Dan_USAAZ, Ema and 6 others like this.
  2. Kati

    Kati Patient in training

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  3. Ember

    Ember Senior Member

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    That was predicted by Robyn, after ME/CFS Alert, Episode 47: “Ok any guesses which CFS doc it is? My guess De MeirLeir since there are licensing issues.” Good call!
  4. Guido den Broeder

    Guido den Broeder *****

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    Will DeMeirleir leave Belgium behind entirely? He has announced that several times in the recent past.
  5. cigana

    cigana Senior Member

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    I think he will reduce his time in Belgium, but will still continue and just pass off the less important workload to other practitioners.

    Interesting that they mentioned he was working on Lyme, it really is becoming more and more of an issue.
    Madison and atoska like this.
  6. Nielk

    Nielk

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    From listening to the newscast, it sounds like they are opening a patient practice for him in Nevada.
  7. Esther12

    Esther12 Senior Member

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    Has anyone here read much of Dr DeMerleir's work? I'm speaking from a position of some ignorance, but I've not been that impressed by some of the things I've seen from him. I am generally suspicious of people claiming to be CFS experts though.
    aimossy and Firestormm like this.
  8. Iquitos

    Iquitos Senior Member

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    I am not impressed with Dr DeMeirleir nor with WPI.
    aimossy, beaker and Firestormm like this.
  9. Daffodil

    Daffodil Senior Member

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    starting October
    vli likes this.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Quite a few of us here are his patients and have kept up with his research. Re: expert--I don't know how you qualify but this is has been his field of concentration for about 20 years and is really all he does.

    He has certainly brought a lot of improvement in me in the last couple of years.

    Sushi
    helen1, Wayne, Clodomir and 5 others like this.
  11. peggy-sue

    peggy-sue

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    My definition of an expert is "somebody who is aware of how much they do not know".

    Anybody else falls into "ex = a has-been; spurt = a drip under pressure". :p
    beaker likes this.
  12. Daffodil

    Daffodil Senior Member

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    he will split his time between nevada and belgium

    for me its probably cheaper to go to belgium since i am very far away in toronto and belgium fees/testing is so much cheaper....but the nevada practice will probably be more lucrative and will hopefully result in a lot more research possibilities.
    snowathlete and atoska like this.
  13. Nielk

    Nielk

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    I am impressed by that, Sushi. Not too may patients can say that about their doctors.
    Clodomir and Valentijn like this.
  14. SOC

    SOC Moderator and Senior Member

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    I think a number of us can say that about our doctors. Those of us fortunate enough to see the top specialists, that is. Part of having "success" with the specialists is understanding that 1) there is no cure, and 2) there's no free lunch.

    I'm very happy to have improved my quality of life from feeling-like-death-warmed-over and bedbound to feeling normal and working (at a physically non-demanding job) part-time. I'm not fully functional. I can't do lots of things I want to do. But it's a big improvement.... and I'm continuing to improve.

    Two specialists helped me get here over the course of 3.5 years. I had to stick with a difficult treatment. I have to take my meds and supplements reliably 4 times a day. I have to manage my behavior and activity. It was not, and is not, an easy path. It wasn't easy and it wasn't fast. If I was expecting it to be, maybe I would have given up on my specialists and felt that they weren't doing anything for me. Fortunately, I got enough info here at PR (and from my specialists) to understand it was going to be a long, slow process of picking away at details, so I'm happy with the improvements I -- and my daughter -- got from working with top specialists.

    I think KDM is one of those top specialists who can help dedicated and determined patients improve their quality of life. I'm thrilled to see him connecting with a research organization dedicated to neuroimmune illnesses.
    MeSci, aimossy, helen1 and 8 others like this.
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    SOC

    You said it well, so I'd have to say "ditto"--not easy, not quick, not cheap, but with the right testing and treatment, a lot of improvement is possible.

    Sushi
    dece, MeSci and filfla4 like this.
  16. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Sushi So this will mean less travel for you right Sushi? Great news if so!

    GG
  17. Dan_USAAZ

    Dan_USAAZ

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    In my opinion, the list of valid "ME-CFS experts" does not have many names on it. KDM would be close to the top of my list. He has operated as both a clinician and researcher in this field for many years.

    Whether or not his theories are correct is a whole other question. If any doctor or researcher had the majority of the questions answered correctly or completely, I would think our cause would be much further along.

    I am not a strong supporter or detractor of KDM, but view his contributions as valid pieces of the puzzle. I could probably come up with some minor criticisms of KDM, but on the whole, I believe his contributions far outweigh the criticisms.

    For anyone that is interested, I tried to execute a Google search that would give links to all the research papers KDM has participated in. The link is below. Unfortunately, I do not believe this list is all inclusive. I do not see some papers that I know he was part of. Two that come to mind are his work on "folded proteins" and the paper he published recently with the WPI pertaining to the activation of HERV antibodies in the gut of ME-CFS patients.

    https://search.knodeinc.com/viewProfile.action;jsessionid=hw3cbiefszyh3fgjyh06v6bm?profile.profileId=B4996489
    beaker, Valentijn, SOC and 2 others like this.
  18. Daffodil

    Daffodil Senior Member

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    kdm told me it will be another 10 - 15 years before we understand the whole picture of CFS
    redrachel76, taniaaust1 and vli like this.
  19. gu3vara

    gu3vara Senior Member

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    Can anybody give me a ballpark figure of how much it should cost being treated by KDM for 2 years or 3 years let's say? 20000$?

    Do you think it's better to see KDM or Dr Enlander, I assume the cost is roughly the same?

    Thx!
    Sherezade likes this.
  20. lnester7

    lnester7 Seven

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    I have seen GREAT improvement too. I am not cured but functional, work full time, have social life and Family life. Also in the past few weeks I am not symptomatic much. Just some latic acid pain when I overdo. But all that bad head feeling and just the general malaise is gone!!!! I see Dr Rey. Like the others said, not easy, long process and costly. But when I average been able to keep my job Vs Cost I am still winning!
    Wayne, Sparrowhawk, cigana and 5 others like this.

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