Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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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. msf

    msf Senior Member

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    You´re right, I am rather easy to troll. Trying to get people who troll to argue properly (i.e. to defend what they have said with facts and logic) must be the biggest waste of time there is, so I will try to avoid it in future. I just hope that people reading the thread for advice are able to tell the difference between those who are trying to be reasonable and informative, and those who just want to have their voices heard. I still think a poll would be much more informative though. Of course, to help people to make a decision about where to go for treatment, there really should be polls for the other ME physicians too, but people never seem to be interested in their success rate so I doubt there will be.
     
  2. Valentijn

    Valentijn Senior Member

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    I respect the right of patients to disagree with KDM's approach. And I hope that they can respect my right and that of others to make an informed decision in seeing him and trying proposed treatments.

    Some people do have valid concerns. Others seem to be agitating for one of the few ME specialists in the world to be shut down. That would be devastating for me and many other patients. I can't get B12 injections from the Dutch system, or even digestive enzymes. Never mind IV antibiotics for a blatant infection, decent oral antibiotics, or any other treatments involving the immune system.
     
    sb4, justy, IreneF and 9 others like this.
  3. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Hillarious
     
    barbc56 likes this.
  4. msf

    msf Senior Member

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    I don't think some people know what they are agitating for, frankly.
     
  5. Vassie

    Vassie

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    I recently posted this in another thread (about the Stanford symposium). ("Ron" = Ron Davis).

    http://forums.phoenixrising.me/index.php?posts/900590/


    "I have been thinking for a long time whether I should write this or not. This is something that worries me very much, so I've decided to share my thoughts with you. I've tried to keep it as short as possible, because I don't want to take too much of your precious time.

    I've been reading some of the great reports of the symposium. I think it's wonderful that Ron wants to share his data and that he wants to work together with anybody to solve this disease. I do however have my doubts about collaborating with professor doctor Kenny de Meirleir who was also present according to the reports.
    It's not my intention to spread slander about him. I do, however, want to warn you that his way of working is questionable and he is not completely reliable. He doesn't disclose his conflicts of interest and they do exist. His statements made to colleagues (doctors, fellow-scientists) and patients are often incorrect, exaggerated, contradictory and even misleading.
    I found out the hard way and I want to prevent this from happening to you. It is so important that Ron, the Stanford Group and OMF succeed.
    Please be careful and be critical."
     
    barbc56 likes this.
  6. msf

    msf Senior Member

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    I´m pretty sure Prof. Davis knows what he is doing. It´s kind of funny you think a scientist of his calibre needs your help, especially when you don´t give any evidence to support your allegations. I think people like Prof. Davis generally like to base their decisions on evidence, rather than just opinions. Also, I should really give up on trying to get people to be consistent, but did you warn him about Lipkin as well? I mean, at least those allegations have been made in court. If your allegations were based on personal experience, I hope you described this to Prof. Davis, otherwise I fear you were wasting your (and his) time.

    Haha, telling someone involved in the Human Genome Project to ´be critical´. You might as well have told him to ´use that thing between your ears.´
     
    Last edited: Sep 16, 2017
    justy likes this.
  7. Helen

    Helen Senior Member

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    Isn´t this just what you are doing by posting your insinuations twice on the forum? Why didn´t you just send a warning to Janet if you felt you had to, or disclosed what you know to the forum?
    KDM has told patients that some of his close family members have ME. Could there be a better motivation for researching this disease? Or did I get anything wrong?
     
    justy, JadeD, dadouv47 and 1 other person like this.
  8. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    You`re pathetic.
     
    barbc56 likes this.
  9. Cheesus

    Cheesus Senior Member

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    Keep it civil, guys.
     
    sb4, justy, IreneF and 6 others like this.
  10. mattie

    mattie

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    +1 Cheesus!

    Just wasted my precious energy reading a thread that consists 90% of a pointless ego-fight between Marky90 and MSF. Really no point in repeating yourself over and over and being rude to your fellow sufferers.

    KDM is the only option for many besides doing nothing at all.
    He’s definitely no crook and he is not in it for the money either.
    He would not have time to spend it anyway because all the man ever does is work.
     
    sb4, justy, JadeD and 8 others like this.
  11. msf

    msf Senior Member

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    Sorry, I guess it was a bit petty, but I have been told off by a moderator before for pointing out that someone wasn´t being logical, so I thought I would just correct the recalcitrant member´s English instead (and to start with I really did think it was possible that they just didn´t know the meaning of crook). Unfortunately, the way debates on PR work at the moment excludes those who get offended easily AND those who like to debate things without worrying about whether they are offending someone. That´s why I suggested in an other thread that we divide the forum into two parts: one where everyone plays nice, and one where you are allowed to point out that someone´s argument is illogical.
     
    Last edited: Sep 16, 2017
  12. dadouv47

    dadouv47 Senior Member

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    I laughed because it's so true :)
     
    justy likes this.
  13. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Sorry to waste your precious energy, though you`re wasting mine too. My ego is not dependent on what MSF thinks of my english skills, which was a poor sidestep from the original point that KDM does not have data to back up his prescriptions.
     
    barbc56 likes this.
  14. msf

    msf Senior Member

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    Perhaps if you had phrased your initial comment like that we would have had a more constructive discussion in this thread.
     
    Marc_NL likes this.
  15. Vassie

    Vassie

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    I've tried to give my opinion in a civil way. It is not my intention to harm his reputation or hurt anyone's feelings. I'm not here to fight with anyone.

    As patients I think we need to inform each other of the good and bad sides (if they exist) of all doctors and treatments. We all have the same goal: getting well.
     
    barbc56 and sb4 like this.
  16. msf

    msf Senior Member

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    Ok, I don´t want to fight with you either. I was just pointing out that I think that Prof. Davis probably would like to see some evidence, so if you have it, it would help your case to provide him (or PR) with it.
     
  17. Helen

    Helen Senior Member

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    You didn´t hurt my feelings anyway, but I don´t think it is civil to insinuate instead of being open with facts, or just sending the message you had to Ron Davis. In my opinion you harm KDM´s reputation by writing what you did, and even using his full name on an open forum.
    Yes, I agree that it would be good to get facts, not insinuations, if it should be of any use for an informed decision.
    Luckily, I had facts at hand before I choose to see KDM.
     
  18. dadouv47

    dadouv47 Senior Member

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    Don't worry @Vassie. Ron Davis, Montoya or whoever decides to work with KDM knows who he's. You don't need to warn them from the ''big danger'' they are facing by collaborating with him.

    We also don't know how KDM works when he's doing scientific studies. You can claim things you have heard from patients, from him, from what u are seeing in his way to treat patients, what he told in some conference etc etc...but I don't think any of us is able to know how we works with other specialists for research purposes.
     
    justy and Helen like this.
  19. msf

    msf Senior Member

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    Hah, I just caught up with what´s happening on PR, Prof. Edwards comments about possibly reporting me to the moderators seem rather quaint now. If only I had known before, then I wouldn´t have had to be so civil with Marky90 (joke!)
     
    Last edited: Sep 16, 2017
  20. dadouv47

    dadouv47 Senior Member

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    Where?

    I guess it's fair to ask for moderation when there are a lot of agressive posts that have anything to do with the main topic subject (still wish he answered my question though)
     
    sb4 likes this.

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