Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Opinions on de Meirlier

Discussion in 'The Gut: De Meirleir & Maes; H2S; Leaky Gut' started by neweimear, Sep 15, 2017.

  1. Joh

    Joh Inactivist

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    Yes, ritux and cyclo are among the things that make me wonder if I should best just wait for more answers and pace. On the other hand it will be probably another year until the results are published. I'm homebound (apart from being driven to the GP), mostly bedbound and don't even know how long I'd still be able to make it to a specialist and if I can afford to wait for another year.
    Plus so far I don't know of any autoantibodies I have. But still not sure if that's relevant or if there might be other relevant antibodies we don't know about yet and haven't been tested for. Everything is so complicated to decide...

    I don't know if you were too hasty. Early treatment seems to be key to have the best chance of remission or even to be a part of the lucky one digit percent number. My fingers are crossed for you!
     
    Last edited: Sep 15, 2017
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  2. neweimear

    neweimear Senior Member

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    Oh Joh, I am like you, homebound mostly. I can drive short distances but I can do very little. I don't expect big improvement from KDm but if I do try ritux, I would like to have some groundwork done I.e improve my gut so if I was a ritux responder, I may have a better chance if staying in remission. Of course that is all wishful thinking. I sometimes feel that my life is over but there is a little bit of hope remaining. It is an awful disease. My family paid for me to see Kdm, I am saving up my own funds for possible ritux. I wish you well Joh, I know it is very hard.
     
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  3. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think you can be sure that Dr de Meirleir has no valid evidence on which to base his comments to you. He frequently makes statements without valid evidence it seems. As a physician I do not see how he can know what he has told you. You are right to be sceptical. This is not real medicine as far as I know. As you know, I am all in favour of new treatments and have developed them myself, but based on carefully gathered evidence. There is no reliable published evidence that I am aware of on 'leaky gut' in CFS or a proven means of treating it.
     
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  4. neweimear

    neweimear Senior Member

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    He also stated that rituximab responders have ebv in their b cells so it was worth getting that checked before commencing rituximab. I had not heard that before either. He said that he will use rituximab if trial results are good even though last time I spoke with him, he was fairly against rituximab. Like I said, I am unsure what to make of him. I was happy to hear that he is considering providing rituximab as it will be hard to get access to it, certainly in my country, so going to KDM is an option.
     
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  5. Marc_NL

    Marc_NL Senior Member

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    Is there any ME specialist in any country that you would advise PWME to consult at the moment?

    Or do you think right now it's better to do nothing and wait a few years for Rituximab and maybe some other proven treatments?
     
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  6. msf

    msf Senior Member

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    Call you out because you did no real research before coming to this conclusion?
     
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  7. msf

    msf Senior Member

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    This is also an ignorant statement. If you knew the first thing about KDM, you would know that he treats according to test results. The test in question here would be sCD14, which KDM first reported to be elevated in his patients, and Hanson has since shown to be elevated in people with ME. If you think KDM has no valid evidence to base his comments on, then Hanson has none to base hers on either. Prof. Davis at least would seem to think she that does have valid evidence to base her comments on however, and I have a lot more confidence in his group being on the right track than the rather blinkered British researchers.
     
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  8. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    There is no evidence that rituximab responders have more EBV in their B cells than anyone else. Note that virtually all adults have EBV in their B cells. It is a normal part of being a human adult. There is no point 'getting it checked' since we all have it. This seems to be another example of ignorance about basic science.

    Please remember that rituximab is much more dangerous if given by someone who does not understand what it does. Relatively few physicians do. We have had in the past a scientist and a physician talking about giving it at low dose - which is the worst thing to do because it achieves nothing and can make you immune to the drug. When rituximab was first used by ignorant physicians in cancer people died unnecessarily. Please be careful.
     
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  9. msf

    msf Senior Member

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    Anyway, apart from people who have no first hand experience of KDM, and who still like to offer their opinion despite the fact that they seem to know nothing about him, there are two groups of patients with differing opinions on him: the ones who have been helped by him think he is good, the ones who haven´t generally think he is bad. You would probably be better off having a poll for whether KDM has helped you or not, and hope that those who haven´t actually seen him don´t vote in it.
     
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  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Of course I know that de Meirleir treats according to test results. That is the problem. Soluble CD14 is not a basis for giving treatment in the clinical context of ME. Maureen Hanson as far as I know has never come near suggesting that patients should be treated on the basis of her preliminary statistical findings. And what has any of this got to do with what country any researchers live in?

    You have shown disrespect for another member calling them ignorant but I cannot say I can be bothered to notify the moderator in the circumstances.
     
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  11. msf

    msf Senior Member

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    No, I didn´t - I said it was an ignorant statement, which is how it seemed to me since it completely failed to mention the Hanson study. As for reporting me, I would really hope that you would see better than to do that, if not because you are a scientist, then because I have never encouraged those who have felt that you have shown disrespect for them to report you yourself.
     
  12. Cheshire

    Cheshire Senior Member

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    It's very difficult to make one's opinion of KDM. There is not a single survey or study to know whether his treatments work or not, what is the percentage of patients being helped and to what extent. We can rely on patients reporting but not everybody agrees, and it's all very confusing.

    That's why I think it is very important that everyone is allowed to express oneself on this very topic, to speak about the test he orders and so on... Especially when in terms of health and money, there's so much at stake. Each one of us need to have as much information as possible to allow each one to make an informed choice, and decide if they want or not to see him.

    Limiting this discussion only to the patients that saw him is too restrictive, IMO.
     
    Last edited: Sep 15, 2017
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  13. dadouv47

    dadouv47 Senior Member

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    Are you saying that there is no way to diagnose leaky gut on a patient? That's pretty much what you are telling. I think you should distinguish evidences about leaky gut and about leaky gut as a treatment for CFS.
     
  14. msf

    msf Senior Member

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    Sure, I wasn´t trying to shut down this discussion, I was just expressing doubt as to how useful such discussions are. It sometimes feels like I am wasting my time in contributing to them, so I hope you are right.

    I do agree that there is a lack of evidence for KDM´s success rate, but there is a lack for every single ME physician, and it annoys me that people do not go on threads about Montoya (for example) and make the same objections about him treating patients without valid evidence. I can only conclude that either people are very anti-antibiotics (rather than anti-antivirals, which the American physicians prescribe), or anti-Belgian.
     
    Last edited: Sep 15, 2017
  15. A.B.

    A.B. Senior Member

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    I had similar thoughts. I thought that it would be better than doing nothing and that he must surely have something useful to offer if many people say he helped them. I was angry about being ill for so long and receiving no treatment whatsoever, and concerned about slowly declining further. I regret seeing him and spending thousands or euros.

    I suspect people say something good about him because he might be the first doctor they see that takes them seriously and wants to treat them. My impression is that his patients soon develop some other illness or new symptoms.
     
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  16. A.B.

    A.B. Senior Member

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    Dr Hanson doesn't recommend treatments based on her research. In fact I remember reading somewhere that she emphasized that more research would be needed to make treatment decisions.

    Also, the first thing about KDM might be that he treats according to test results, but the second thing about him is that these are unreliable tests from a private company.

    Do you really believe that almost everyone coming to KDM has chronic lyme and that the rest of medicine is just too stupid to realize this? At least some of these are bogus tests.

    How do you explain the high prevalence of infections that KDM sees n his patients? According to him every patient has one or several chronic infections. Reality or fiction?
     
    Last edited: Sep 15, 2017
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  17. duncan

    duncan Senior Member

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    For many, this will be the bottom line. If as a patient you are not content to just exist, and need to try something, then there are no sure things from the few clinicians willing to deal with us. I've been to a few of the biggest names, and I'm still sick; but I do not regret for a second trying what they recommended.

    So, kudo's to the doctors willing to try in earnest to help us and not try to fleece us, and to the patients - buyer beware.
     
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  18. JadeD

    JadeD Senior Member

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    @neweimear - I'm afraid there is always going to be divided opinion about all of the ME specialists and their treatment approaches since we don't have any solid evidence yet for the majority of the interventions.

    However just because there are not published studies we cannot ignore the years of clinical experience that these doctors have - the likes of Peterson, Klimas, Montoya and KDM etc. KDM co-authored the International Consensus Criteria for ME so he is in no way a 'crook' and is respected by ME professionals alike.

    If there isn't evidence to disprove his theories and treatment approaches then I do not feel anyone can say he is completely wrong, unless it goes against all of the principles of basic science of course. In which case it has been highlighted by people on here who may be more knowledgeable in those particular areas. The only people who can form a true opinion are the patients themselves based on their prior experiences.

    Many people have been helped by KDM. An independent review of his work found approximately 70% of people improved, 20% stayed the same and 10% got worse. Unfortunately there are some people on here that have been made worse. There is always a risk with all treatment. Therefore a risk vs benefit decision must be made.

    I have personally been helped massively by KDM. I've had years of IBS to have recently discovered I have severe fructose intolerance amongst many other problems. Something the NHS either hasn't got the resources or care to identify. I found considerable benefit from reducing my consumption of this. This finding is of course unique to me and is a tiny aspect to the general work up that KDM does. It may or may not be connected to ME however it certainly does predispose to gut dysbiosis which is starting to be linked to the pathophysiology in ME by several research groups. I've just used this as an example of one of the many benefits I have already experienced with his treatment.

    So I would suggest you make your own informed decision. Maybe wait for your treatment protocol and you will be in a better position to critique it. KDM has been flexible in his approach with others so I'm sure he'll be happy to discuss your concerns/thoughts at the next consultation.
     
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  19. dadouv47

    dadouv47 Senior Member

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    +1000

    I'm under treatment with KDM and I pretty much hate the god or devil debate. I'm having only small improvements under his treatment, and I don't know if it will be worth it (overall health, cost of treatment etc...) but every forum is mostly divided between his patients that got in remission (or feeling way better) and between those that didn't get any help. I don't think this kind of result/oriented thinking is the most rationale one, even if I understand it because you put an huge amount of money and a lot of hopes into one person (I understand the feeling so I don't blame them). That's why I agree that while having reports from patients is great, it's also not enough because patients are less rationale when it comes to make conclusions about a Doctor.

    I think he has his qualities and flaws, and for the moment I can't see another Doctor as competent as him (at least in Europe) for my case. Maybe I would have to change if things doesn't end well (hope it won't be needed).

    I think his biggest flaw is by far his lack of good follow-up. I know he has too many patients but that's doesn't change the fact that it could be an huge problem for patients that are being treated with several medications and could experience a lot of side effects.

    I don't remember reading experiences where he was as imprudent as @A.B. told but I'm not surprised at all because of his lack of communication and overconfidence.
     
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  20. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Elaborate.
     
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