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Interesting first appointment with Dr. KDM

Discussion in 'ME/CFS Doctors' started by SamB, Mar 27, 2017.

  1. SamB

    SamB

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    Hi all,

    Its my first post, Just had my first appointment with DR. KDM in Brussels and he told me that he has found the cause of the illness and the information will be disclosed around July this year. Don't really know what to make of it, Just thought I would share.
     
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  2. Kina

    Kina Admin Support Staff

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    He, personally, has found the cause of ME?

    I wasn't aware that he has being doing intensive research into ME.

    I wonder why July.

    Is he treating you for Lyme disease?
     
    LivingwithFibro, barbc56, wdb and 5 others like this.
  3. Marc_NL

    Marc_NL asjemenou

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    That's great news !

    Did he also tell you what implications this has for you personally as far as testing and treatment, what (if any) tests did he order for you?
     
    Last edited: Mar 27, 2017
  4. SamB

    SamB

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    HI,

    Thats what I got from what he told me. He said he has been working really hard the last 12 weeks and he has found the the cause. My brain wasnt working the best at the time. I had hardly any sleep. He seemed excited to tell me though. It was my first appointment so only the lactose test today.
     
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  5. Jesse2233

    Jesse2233 Senior Member

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    Very interesting. I'm seeing him Friday, I'll try to learn more
     
  6. SamB

    SamB

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    Is it your first appointment with him?
     
  7. Jesse2233

    Jesse2233 Senior Member

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    Yes, seeing him in Reno
     
    Shoshana likes this.
  8. jpcv

    jpcv Senior Member

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    SE coast, Brazil
    Good news, keep us updated :thumbsup:
     
  9. gregh286

    gregh286 Senior Member

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    Very cloak and dagger from KDM.
    has us in suspense now.
     
    merylg and Laelia like this.
  10. Kina

    Kina Admin Support Staff

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    Likely has to do with working with what used to be called the Whittlemore-Peterson Institute. Probably going to be a huge press release in July. Probably will involve new expensive testing if history repeats itself.

    At the end of the day, I will believe it when I see it and the replicated research as well. I wish I had time to say more about this right now, but I don't. Cause may not translate into treatment at all. And seriously, who says they know the cause of something -- something that other researchers have been working day in and day out on, and then says but I won't tell you for 3 months. What about publishing research in respected journals or at least keeping the ME community up to date. I have been enjoying the recent openness of researchers like Ron Davis -- answering the questions of patients. Lots of researchers at IinME happily answer research related questions. I don't know what all this cloak and dagger stuff is and I don't care for it. KDM has done this quite a few times and it hasn't panned out.

    @Jonathan Edwards -- any thoughts of what the cause could be according to KDM?
     

    Attached Files:

  11. A.B.

    A.B. Senior Member

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    By looking at what de Meirleir has been doing recently, one can probably predict the reveal:

    During that conference last year he presented

    A panel of biomarkers accurately identifies CFS/ME patients and contributes to the understanding of the pathophysiology of the disorder

    In 2013 he published

    Plasmacytoid Dendritic Cells in the Duodenum of Individuals Diagnosed with Myalgic Encephalomyelitis Are Uniquely Immunoreactive to Antibodies to Human Endogenous Retroviral Proteins
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3776582/

    Recently he published

    Humoral Immunity Profiling of Subjects with Myalgic Encephalomyelitis Using a Random Peptide Microarray Differentiates Cases from Controls with High Specificity and Sensitivity

    Cort wrote that

    https://www.healthrising.org/blog/2017/03/21/immunosignature-biomarker-chronic-fatigue-syndrome/

    So it'a going to involve the immune system, the gut, and a human endogenous retrovirus.
     
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  12. Jonathan Edwards

    Jonathan Edwards Senior Member

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    No idea. Like you, I will not be holding my breath until July. Staged releases of information 4 months in the future are nearly always empty talk in my experience. If you are waiting on official publication in a journal by and large you have no idea when the article will come out.
     
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  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    If you see him again tomorrow, be sure that you ask for your diagnosis. I have seen Dr. De Meirleir for several years. Some of the treatments he proposed for me helped (see the the file Kina attached about GcMAF)--others didn't. Over the years, he has said many times that he has found the cause and, while he seems to have found some interesting markers, nothing has turned out to be the actual cause.

    Good luck with your appointment. If you have a problem remembering what he has said, you can ask to record it.
     
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  14. charles shepherd

    charles shepherd Senior Member

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    Reminds me of all the media hype that followed the 'discovery' of a urine test for ME/CFS several years ago >>

    After more than 20 years of investigation, and having assessed and treated thousands of patients in Europe and America, Prof De Meirleir, who is an internist at the Himmunitas Foundation in Brussels (a non-profit organisation specialising in chronic immune disorders), believes he has identified a mechanism to explain the development of ME that opens up new treatment options.

    In addition, he and his fellow Belgian, Dr Chris Roelant, Chief Operating Officer of the diagnostics company Protea biopharma, have developed a self-diagnosing urine test for ME.

    This 'discovery' was given uncritical coverage in the UK Daily Telegraph and several other papers and created a lot of false hope in the patient community at the time...

    http://www.telegraph.co.uk/news/health/5407749/ME-Proof-that-it-isnt-all-in-the-mind.html
     
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  15. alex3619

    alex3619 Senior Member

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    I like KDM. We had a brief chat in 1999 at a conference in Sydney, and I have had a chat with him (online or phone, I don't recall now) at least once since. I think he is genuine. I think that history also shows he gets too enthusiastic too fast.

    Its funny about PGE2, that hypothesis is what drew me into ME research in 1993. In fact I was on a modified diet to limit it. This had side effects. There was short term gain, but long term decline.

    PGE2 is derived from arachidonic acid, which also leads to many other series 2 eicosanoids. However its an essential fatty acid.

    Previously it has been postulated that we over release free arachidonic acid (alcohol does this for example) via oxidative stress and other mechanisms, leading to inappropriate eicosanoid synthesis. It most likely is not just PGE2 either.

    However this research has languished for two decades and not much has been done. You cannot just cut arachidonic acid out of the diet either, as being an essential nutrient you will die without it.

    Those of us who are salicylate sensitive will also not make enough of it.

    [​IMG]

    However as you will see from the chart these paths are inhibited by NSAIDs so you would think they would have more impact on ME. If there is a problem here, and its a big IF, then its about fine scale regulation of arachidonic acid, not blanket inhibition. This does however become more of an issue in anyone with low cortisol, as the normal function of cortisol is to lower arachidonic acid use.

    So I am going to say I think its unlikely the issue they are alluding to is PGE2. Whatever it is, there is a need for ongoing research. Promising leads are not validated and replicated hypotheses until after the science is done.
     
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  16. SamB

    SamB

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    Thank you! I dont think I will be seeing him tommorow. Just having the fructose test done and giving some blood then back for the results in 2 months.
     
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, I would concur. I think he is genuinely working hard to unravel this, but sometimes he is overly enthusiastic about findings that do not pan out.
     
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  18. alex3619

    alex3619 Senior Member

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    Let me say something in defense of enthusiasm. Something has to keep our doctors treating patients and our researchers investigating. Enthusiasm is OK to a point, maybe even necessary for many, so long as good scientific methodology is adhered to. The enthusiasm becomes tempered or enhanced by results. So long as sound reasoning is not compromised I think its a good thing.

    It may also be the case that he cannot help himself if he sees a patient who needs cheering up, and so drops hints. I would rather he didn't, as this can lead to false hope and a roller coaster from false expectations, just as I do not like the cult of positive thinking.

    On the other hand I will eagerly read the July release, just as I will much of the other research. We don't know where the final answers will come from, and while most announcements wont be that answer even if they promise it will be, one day it actually will be.
     
  19. barbc56

    barbc56 Senior Member

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    i have no idea of the veracity of this article, the organization that wrote it nor the treatment promoted. At first glance the writing looks a bit overdramtic even if the allegations are true. The article was written a long time ago but I couldn't find a date.
    .http://www.ncf-net.org/forum/CallForResignation.htm
     
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  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    As you said, that is old. Later it was refuted. It is a shame it is still out there.
    To publish in peer reviewed journals the article has to be accepted by a peer reviewed journal. He has numerous articles that he has submitted that are awaiting acceptance but there is no guarantee that this will happen.
     
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