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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. dga5000

    dga5000

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    I've seen Prof de Meirleir twice in the last year. The first visit cost me £3500 and the second £2000 - this included travel and hotels etc. I expect further visits to be much less as we zero in on the specific problem with the immune system. Almost all the costs were for blood tests and some tests on tissue samples, along with an exercise capacity test. To see him the appointment is only £80. The costs of medication can be expensive. Prof de Meirleir is a big fan of GcMAF and 4ME - these can cost around £300 / month total.

    I've seen both Dr Enlander and Prof de Meirleir. Both are specialists in the field. Enlander is probably a bit more personable. That said, given the new resources now available for de Meirleir at the WPI, I think you'll have more luck getting to the cause of your illness with him.
    gu3vara likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Gu3vara, where are you? I only know costs in Belgium. I don't think anyone knows about the costs at WPI yet.

    In Belgium, your cost estimate is way too high.

    Open a chat if you want to talk more about it. There are too many variables for a good ballpark--what tests you have already had, whether insurance covers your meds, possible travel costs, symptoms that would indicate more or less testing...

    Best,
    Sushi
    gu3vara likes this.
  3. Nielk

    Nielk

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    The question in the US is whether WPI will accept any insurances. Dr. Enlander accepts Medicare. All the labs are covered by Medicare too.
    Iquitos, beaker, WillowJ and 2 others like this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, much less! I am exploring now what I need to do to see him in Reno.

    Sushi
    Wayne, snowathlete and Valentijn like this.
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    This was posted on a Dutch ME/CFS Facebook site:

    ME/CVS Vereniging


    I used google translate for the translation, so pardon some of the weird diction! (I did some minor editing to make it more readable in English.)

    P.S. If a Dutch speaking member wants to provide a better translation, just PM it to me and I'll edit the above.
  6. snowathlete

    snowathlete

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    Huge relief for me that I can still see him in Belgium. I am therefore very happy about this new appointment for him!
    Clodomir likes this.
  7. roxie60

    roxie60 Senior Member

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    will he be taking new patients? from out of Nevada? that is a huge move. I am surprised he is going with WPI. I hope it works out and helps more people
    vli likes this.
  8. vli

    vli

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    Hi, I've PM'd you.
  9. Snow Leopard

    Snow Leopard Senior Member

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    Who does impress you though? The key for KDM is that he has demonstrated a deep commitment to patients. We can't all have the greatest luck in science for example.
    Dan_USAAZ and Valentijn like this.
  10. Esther12

    Esther12 Senior Member

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    True, I have to admit that I'm generally most impressed by those who have come into CFS, tested a theory, found that they were wrong, and then left. I'm sceptical that anyone has the expertise that justifies the sort of figures being mentioned in this thread, or to make much of a living from 'treating' CFS. This does leave patients in a bit of a bind, and leave a lot of room to those who are likely to be even worse for patients. I wish we were living in a society that had a more realistic view of medical 'experts', and think that would help a lot of the problems around CFS, and I'm not really sure how it's best to respond given that this is not the case.
  11. lansbergen

    lansbergen Senior Member

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    I have more respect for those who keep trying to solve the puzzle.
    dece, Snow Leopard, cigana and 5 others like this.
  12. filfla4

    filfla4 Senior Member

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    Absolutely!! And that's just what KDM did with me. I have been his patient for 2.5yrs and I have to say I have seen a lot of improvement with his treatments. More than anything else he didn't give up on me. He knew that my bloods showed that I most likely had an active infection and he tested me for everything under the sun. It is only because he persisted, tweaked his protocol and refined his testing methods that he managed to diagnose me with Lyme by PCR, confirmed by DNA sequencing. That's a hell of a lot more than any doctor did for me in 20yrs in my own country.

    He is generally brief in his clinical assessments, mostly due to time constraints, however I've also seen the human side to him. Two years ago my 15yr old son was diagnosed with a very large brain tumor, mid-brain, which required air travel as a stretcher case, with ambulances on the tarmac at either end, and a 9hr craniotomy. At the time, I was on pretty hefty doses of GcMAF and was really struggling myself. I called him in the middle of the morning, without having an appointment. I was put through to him immediately and we must have been on the phone for at least 40mins. He really did his utmost to help me in a time of crisis.

    I have a lot of respect for the man.
    Wayne, Orchid, Clodomir and 6 others like this.
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    My bolding: just a note, his clinic in Belgium is non-profit--he takes no salary from it. His salary came from teaching at a university.

    Sushi
  14. Esther12

    Esther12 Senior Member

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    Really? That's much more how I think that things should be done at the moment. As I said earlier, I know very little about KDM, and just happen to disagree with some of the things I've seen from him, so don't want to act as if I'm engaging in an informed critique of him or his work.
    Valentijn and aimossy like this.
  15. FancyMyBlood

    FancyMyBlood Senior Member

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    I don't know how you got this idea, but that's absolutely not true.

    It's no my intention to offend anyone, but I have had very bad experiences with this doctor. He has so many conflicts of interest it really make me gag. He has a financial stake in the company (RedLabs) he orders tests from. He recommends dietary supplements from his wife's company. I also believe his wife owns the company that delivers the GcMaf he prescribes and the lists goes on and on.

    On top of that I believe his theories and therapies are pretty ''wooo''. Too bad it costed me over €3000 to figure this out.

    Needless to say I'm very unimpressed with the route WPI is going. I really hoped they would turn into a legitimate research institute after the departure of Mikovits :(
    redrachel76, Blue, Iquitos and 2 others like this.
  16. taniaaust1

    taniaaust1 Senior Member

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    Yeah, he's one of the ones I'd rate close to the top of my list too as being a valid ME/CFS expert and would love to go and see. I have heard from others who have been patients of his and who certainly dont regret seeing him at all.

    IF I had a choice between him and Cheney, I may of even choose KDM over Cheney. The only one above KDM I'd choose is probably Dr David Bell. Anyway, I see KDM on par with most of the other well known ME/CFS experts out there, each has their own theories and ways of doing things and they each are really trying to get to the bottom of this illness.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi FancyMyBlood (alway liked that name!),

    I am very sorry that you had a bad experience and didn't respond to treatment. It is a sad fact that a certain percentage don't--sorry that you were one of them

    Re: KDM's sources of income, my post indicated that he doesn't receive a salary from his clinic--he doesn't. But of course he has to have a source of income. I don't know what his financial relationship is to Redlabs but since they offer good tests at reasonable prices (considerably lower than comparable US labs), it really doesn't matter to me who is receiving financial support from this lab.

    As far as GcMAF, he supplies it for 1/4 of the price of other sources, so again, I have no problems with that. He also encourages patients to shop online for supplements he recommends but yes, they are available from Kalida at competitive prices. Their 4 ME is less expensive than the same drug in the States. Although he suggested that I get it in the States where my insurance covers it.

    So I am one of the lucky ones who has responded to treatment and had a good experience with Himmunitas.

    Best wishes,
    Sushi
    Wayne, Clodomir, snowathlete and 3 others like this.
  18. knackers323

    knackers323 Senior Member

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    Hi dga, what is 4ME? I've never heard of it and can't find any reference to it.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    It is Nexavir.

    Sushi
  20. Guido den Broeder

    Guido den Broeder *****

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    Rotterdam, The Netherlands

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