Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Beginner's Guide: A Roadmap for ME/CFS Testing and Treatment

Discussion in 'General Treatment' started by Hip, Jul 25, 2014.

  1. rodgergrummidge

    rodgergrummidge Senior Member

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    Hip

    While there dont appear to be any trials specifically examining the use of modafinil/armomodafinil in fatigue of ME/CFS patients, it has been found in multiple clinical trials to improve fatigue. I have summarized the studies below.

    Clearly they are not curative and dont seem to work in all ME/CFS patients. However, they are not associated with addiction and have fairly good safety profiles, so they are being increasingly examined for their potential benefit in ME/CFS.

    Modafinil and Armomodafinil have been found to improve fatigue symptoms in some clinical clinical conditions. For example, Armodafinil was tested in 70 patients with HIV to evaluate its efficacy and safety for fatigue and depressive symptoms. In intention-to-treat analyses, the fatigue response rate to armodafinil was 75% and to placebo 26% (Rabkin 2011, Psychosomatics 52(4):328–36.). Armodafinil appeared to be effective in alleviating fatigue and was well tolerated.

    In another clinical trial, using modafinil for fatigue in 105 HIV/AIDS patients (Rabkin 2010,
    Journal of Clinical Psychiatry 71(6):707–15). In the intention-to-treat analyses, the fatigue response rate to modafinil was 73% and to placebo 28%.

    Modafinil has also been examined in a large clinical trial for the treatment of fatigue in 631 patients with cancer (Jean-Pierre 2010 Cancer 116(14):3513–20.).They showed a significant interaction between treatment condition (modafinil 200mg/day) and baseline fatigue, where patients with severe baseline fatigue benefited from modafinil and patients with mild or moderate fatigue did not.

    food for thought

    Rodger
     
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  2. Hip

    Hip Senior Member

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    @rodgergrummidge

    I did actually include modafinil in the roadmap document as a result of @joanna91's suggestion earlier in this thread. If you have other ideas for what might be important to include, please let me know.
     
    rodgergrummidge likes this.
  3. pattismith

    pattismith Senior Member

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    Wonderful document, many thanks to the autor!
     
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  4. rodgergrummidge

    rodgergrummidge Senior Member

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    great!
     
  5. Hip

    Hip Senior Member

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    The roadmap I try to keep evidence-based, focused on treatments that have proven effective in studies, and focused on established treatments that are used and considered effective by the internationally renowned ME/CFS doctors. Sometimes if there are some anecdotal reports regarding the efficacy of a therapy for ME/CFS, I might include that, if the reports are detailed and provided by reliable people.

    There are a lot of other treatments that ME/CFS patients experiment with, but I only include treatments that are known to work (at least for a subset of patients).


    No doctor I am aware of is treating ME/CFS as a retroviral infection (except possibly Dr Weir, but I am not sure), and we don't have any published evidence that a retrovirus might be involved, apart from a comment by Prof Lipkin saying that he found preliminary evidence of retroviruses in ME/CFS patients via high throughput sequencing (in an unpublished study).

    Some people have reported mild improvements on tenofovir, and Dr Chia reports a few of his patients achieve improvements on tenofovir; but that does not prove a retroviral etiology, since tenofovir is a potent immunomodulator that may fight viral infections by its Th1-stimulating effects. I am not ruling out the possibility that in the future someone might find a retrovirus in ME/CFS, but since at present we have pretty much zero evidence of a retroviral involvement, there's no basis for talking about retroviruses in the roadmap.

    But if I come across a lot more reliable anecdotal reports about tenofovir (or the tenofovir + raltegravir combo) consistently making major improvements to ME/CFS symptoms, that might be enough evidence to warrant inclusion.
     
    Last edited: Sep 11, 2017
  6. fingers

    fingers Senior Member

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    SW Endland
    Several doctors, several studies.
    Lipkin? Government puppet.
     
  7. Hip

    Hip Senior Member

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    Why are so many retrovirus advocates like yourself susceptible to wacky conspiracy theories?

    (You might want to answer that question on an appropriate thread — and it's a genuine question).
     
    fingers likes this.
  8. fingers

    fingers Senior Member

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    SW Endland
    Is this not an appropriate thread?
    Yes, it's a very good and genuine question. My attempts at answering...

    1) Not really thinking of myself as an advocate, just looking for possible ways out of this...experience with ART so far is quite positive, but I'm not unequivocal;
    2) Conspiracy theories; we all have to try to work out what is conspiracy and what is simply people with their own agendas; Wessely and crew have their agendas...no? Lipkin has his agenda too; who pays the piper?
    3) The retroviral theory seemingly has a lot of good science behind it; do your proposed treatments have just as good science? Are they proven effective?

    Appreciate the dialogue. Hopefully you and I will continue to get on and have further constructive dialogue. Let's get Wessely talking to Lipkin, Mikovits....whoever you think constructive. Psychiatry, virology, politics. Let's get to the underlying truth.
     
    Countrygirl likes this.
  9. Mollymolly

    Mollymolly

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    Do you have English road map for CFS.?
     
  10. Hip

    Hip Senior Member

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    The roadmap is in English!
     
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  11. Alvin2

    Alvin2 If humans were rational...

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    Last edited: Oct 23, 2017
    Mollymolly and Hip like this.
  12. Mollymolly

    Mollymolly

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    Yes my bad , I saw it in French but then I got it thank you ..
     
  13. Hip

    Hip Senior Member

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    Ah yes, there is a French version, kindly translated by Frederic83 on this forum.
     
    Last edited: Oct 24, 2017
  14. rodgergrummidge

    rodgergrummidge Senior Member

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    great work and contribution @Hip
     
    Hip likes this.
  15. Alvin2

    Alvin2 If humans were rational...

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    I'm thinking we should expand its appeal to raise the profile of ME/CFS research. A few more languages just might do the trick, so i think we should follow the lead set by the bible and translate it to LOLcat and Klingon :woot:
     

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