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!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

Prof K de Meirleir. Is it worth consulting him? Do his treatments give results?

Discussion in 'ME/CFS Doctors' started by Mog, Aug 13, 2011.

  1. Mog

    Mog

    Messages:
    91
    Likes:
    9
    UK
    Can anyone advise me? Is it worth the expense and considerable personal effort to consult Prof de Meirlier in Belgium (I'm in the UK)? Does the treatment he offers give demonstrable results? I just can't decide if it's worth it or not. As I'm at the end of my tether (again), I feel I want to do something, anything to try and get some improvement in my condition. But is it false hope to think he can improve things? Hoping somebody can help me with their personal experiences of treatment with him.
     
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,085
    Likes:
    909
    Concord, NH
    If you don't get much response here, you might want to post your question on one of the GCMAF threads.

    GG
     
  3. Nielk

    Nielk

    Messages:
    5,271
    Likes:
    5,267
    Queens, NY
    I think the lack of replies - when there are so many KDM patients on this forum, is very telling.
    Unless I'm wrong and they are all sleeping.
     
  4. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,313
    Likes:
    4,662
    australia (brisbane)
    While this is a new thread, i will throw this question out there, are people improving alot on gcmaf, recent threads seem to show people coming of it after several months with little improvement, could be wrong about this? i suppose it depends on what we are diagnosed with and the state of our immune system.

    cheers!!!
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,069
    Likes:
    6,032
    Albuquerque
    I have replied by PM. I have been very pleased to be a patient of Prof. De Meirleir's and am in touch with a number of his other patients who feel the same way.

    I think it is better to discuss treatment individually though, as we all test differently and there is not likely to be any one treatment plan that will benefit all. Because something is working for me, may not mean that it will work for others and vice-versa.

    I think some of the other patients of KDM whom I know, feel the same. We are all on different treatment plans after extensive testing.

    Mog's questions are obviously very sincere and I think it works better to talk individually.

    Best wishes,
    Sushi
     
  6. Nielk

    Nielk

    Messages:
    5,271
    Likes:
    5,267
    Queens, NY
    Hi Sushi,

    I knew we can count on you. It's good to hrar that many patienys are happy with thrie reatment with KDM. It makes sense. Prople are travelling fromm all over to see him.
    It must be that they get what they are seeking.

    Be well,
    Nirlk
     
  7. Mog

    Mog

    Messages:
    91
    Likes:
    9
    UK
    Hi all, Thanks for your responses so far. Maybe I've posted in the wrong place? I'm a newbie at this, so happy to take advice on that. I will read up on the gcmaf threads now, thanks for that pointer. But would also welcome any more replies to my question.
    Sushi, thanks very much, I've sent a PM.
     
  8. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    948
    Likes:
    91
    Tony has a thread on his experiences as a KDM patient. Also, who are you seeing in the UK? It kinda depends what yr other txtment options are.
     
  9. Mog

    Mog

    Messages:
    91
    Likes:
    9
    UK
    I've no other treatment options in the UK at the moment, unless anyone can suggest anyone. I was consulting Dr Andrew Wright who was the only one offering me treatment options, but he suddenly stopped his fatigue clinic a year or so ago, I'm not sure why. Will check out Tony's thread, thanks.
     
  10. Tony

    Tony Still working on it all..

    Messages:
    359
    Likes:
    41
    Melbourne, Australia
    Hi Mog,

    My thread is here: http://forums.phoenixrising.me/showthread.php?241-My-Prof-De-Meirleir-patient-experience...

    I'm very, very happy to have KDM working with my doc here in Australia! I feel better most of the time, feeling much less sick and toxic. It took a long time to see results, about 6 months in, then at 8 and now having been on Nexavir for 18 months I'm living an improved life. I'm still far from normal, but I'm very pleased to have my quality of life improved so that I go out much more often, including at night which used to be a rarity.

    I was operating at about 20-30%, now I feel that's more like 25-35%. The best thing is simply feeling significantly less of that horrible, poisoned, nausea, headache crap we all know about. And I've not yet started GcMAF...
     
  11. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,042
    Sth Australia
    I dont think anyone can tell you that as one never knows if one will respond to certain treatments or not till one tries them.
    All the famous ME/CFS doctors do help some patients (even Wessely), they are well known as they have helped some, all depends on what subgroup you have etc.

    Be prepared to get any kind of result when seeing a ME/CFS doctor.. it could help or it just may not. Go into it hopeful but with not too many expectations. Even little improvements may be worth it to someone (I know Im happy with 5-10% improvements when I try something new), stay rational about whatever treatment you are going to try.
     
  12. Mog

    Mog

    Messages:
    91
    Likes:
    9
    UK
    Tony, thanks very much for that. Good to hear that you've had some improvement and are feeling a bit better; that's encouraging. Must be nice to have the yukky feeling reduced somewhat. Hope it continues for you. I'll check out your thread and keep up with developments there, thanks.
    Taniaaust1, thanks for your timely advice. I know, I'm still looking for the miracle - when I really should know better after 18 years :-( As you say, be hopeful but not expect miracles.
    Thanks to everyone for their replies.
     
  13. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    948
    Likes:
    91
    Well, I would think at a minimum he will at least give you a thorough work up.. which would be hard to get in the UK.
    Hypercoagulation, dysbiosis, food intolerances, immune system etc...
     
  14. Mog

    Mog

    Messages:
    91
    Likes:
    9
    UK
    That's true. As you say, it's extremely hard, if not impossible, to get that in the UK, and even after all this time, I still really have no clue what is actually wrong in my body. And it would certainly be a help to know, or have a better idea. As it is, I'm just floundering around trying various supplements and diets etc, but with no idea if I'm on the right track or not.
     
  15. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    I have emailed Dr. De Meirleir via the email adress provided on this page, because i would like to get an appointment. Not so much for the treatments, but more for the testing, at this moment. I haven't gotten a reply yet, but it has only been a couple of days, since i sent my email. Does anyone know if that adress mentioned there is correct and if they reply if you ask for an appointment by email? Or does one have to call? Thanks.
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    7,069
    Likes:
    6,032
    Albuquerque
    This should be the right address, but you get faster response from calling. They will give you an appointment on the spot.

    Sushi
     
  17. Mog

    Mog

    Messages:
    91
    Likes:
    9
    UK
    Eric_s, I emailed the address you reference at the start of this year, and got a reply within a few days, but don't know if it's still current.
     
  18. ukme

    ukme Senior Member

    Messages:
    169
    Likes:
    8
    In answer to your question mog, well I think it's worth it to get the tests and see a very dedicated ME doctor. However, personally I'm not a fan of the abx protocols but then not everyone is put on these.
     
  19. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    Thanks, Sushi and Mog, i'm not in a hurry, so it's no problem for me to wait until they reply.
     
  20. Mog

    Mog

    Messages:
    91
    Likes:
    9
    UK
    Thanks ukme. Can I ask why you're not a fan of the abx protocols? Because they're sore on the body or because they're not effective? I have tried abx but it was only for 2 weeks at a time, not a protocol, so I'm sure it wasn't a fair trial of them.
     

See more popular forum discussions.

Share This Page