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What treatment trials for ME/CFS are currently ongoing?

Discussion in 'BioMedical ME/CFS Research' started by Sasha, Nov 24, 2017.

  1. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    We need more than B vitamins and LDN!!!!
     
  2. Inara

    Inara Senior Member (Voting Rights)

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    Isn't that one finished, and wasn't the success negative? Or is there a second trial?
     
  3. Squeezy

    Squeezy Senior Member (Voting Rights)

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    Chronic - all of the above - Syndrome.

    You nailed it.
     
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  4. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The trial on fecal transplantation will start up in March next year, and they are still open for inclusion. The trial is called The Comeback Study and it has its own Facebookpage. Currently everything is in Norwegian, but I am sure they can write updates in English as well if requested.
     
    Last edited: Nov 25, 2017
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  5. Cheshire

    Cheshire Moderator Staff Member

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    I just created a new thread listing ongoing studies. It's the first draft and I'd like to get your feedbacks to have the most uptodate list.
    So do not hesitate to signal any ongoing study not yet listed.
    Signal any error (spelling, broken link...)

    There are several studies that could be listed in several topics, I choosed one more or less arbitrarily, please suggest any other classification you think is better.
    There are several ongoing studies which were mentionned on S4ME, but for which I couldn't find official information (eg. LDN (Olli Polo + Younger's pilot), B vitamins (Rekeland); Immunadsorption (Scheibenbogen)

    Thanks

    Edit: I forgot the link!
    https://www.s4me.info/index.php?threads/ongoing-me-cfs-studies.1241/
     
    Last edited: Nov 26, 2017
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  6. Sasha

    Sasha Senior Member (Voting Rights)

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    That's a great resource, @Cheshire! Far more going on than I thought.

    Would it be helpful to indicate in the study titles which are treatment trials?
     
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  7. Cheshire

    Cheshire Moderator Staff Member

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    Added (in red to avoid confusion with the title, I tried to choose a not too agressive red)
     
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  8. Sasha

    Sasha Senior Member (Voting Rights)

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    Here's an official link to the Immunadsorption study (though not a very helpful one - it just gives one sentence about it:

    https://immunologie.charite.de/forschung/ag_scheibenbogen/schwerpunkte/#c30209007

    Note the second study there, also.

    Some speculation on Phoenix Rising that the Rekeland study was one of B cells, not B vitamins - I can't find any official info.
     
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  9. Inara

    Inara Senior Member (Voting Rights)

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    Hi @Cheshire, great list, thank you so much!

    The immunadsorption and HyQvia trials are treatment trials, aren't they?
     
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  10. Inara

    Inara Senior Member (Voting Rights)

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    My information from the team was the immunadsorption study is finished, but the results are not published yet, it seems.

    HyQvia (immunoglobulins) is on-going.
     
  11. Sasha

    Sasha Senior Member (Voting Rights)

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    They're both medical interventions so I think they must be.

    Here's some info on HyQvia (which I'd never heard of): http://www.hyqvia.com/
     
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  12. Inara

    Inara Senior Member (Voting Rights)

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    I participate in that study (but cannot say more). Maybe results can be published some time in 2018. I am myself very curious about the results.
     
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  13. Cheshire

    Cheshire Moderator Staff Member

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    Added :)
     
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  14. sjJohnny

    sjJohnny Established Member (Voting Rights)

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    From their December 20 press release:

    Hemispherx recently reported that discussions are underway with the U.S. FDA on the next steps regarding a New Drug Application (NDA) for Ampligen® in ME/CFS, which afflicts more than one million people in this country, according to the Centers for Disease Control (CDC). Ampligen® is the only drug to have completed a Phase 3 clinical trial in the U.S. in ME/CFS.

    https://finance.yahoo.com/news/hemispherx-successfully-completes-commercial-scale-140024889.html
     
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  15. Subtropical Island

    Subtropical Island Senior Member (Voting Rights)

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    Could someone please direct me to an up to date summary of ampligen? (=Rintatolimod)
    I did google and find it on MEpedia but it looks like it was last updated in 2016?
     
  16. Perrier

    Perrier Senior Member (Voting Rights)

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    I saw an interview with Dr Klimas ( easy to find) and she states that in dec 2017 she is doing a human trial. She is using gulf war patients and she says they present much like ME patients.she has cash because it’s gulf war illness. I tried to learn what drugs she is using and could not find out from the internet after typing in her name and her recent studies. She said in the interview that in her mouse models she was able to “ reboot the immune system”

    Please post if you have info
    Thanks
     
    alalush likes this.
  17. sjJohnny

    sjJohnny Established Member (Voting Rights)

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    Maybe not what you want, but:
    http://ir.hemispherx.net/Press_Releases
     

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