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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. Sasha

    Sasha Senior Member (Voting Rights)

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    Again, in the light of... you know...?

    I'm aware of Fluge & Mella's CycloME study:

    • CycloME part A – a phase II study investigating the effect of treatment with the chemotherapy drug cyclophosphamide in patients with moderate to severe ME/CFS.
    • CycloME part B – a phase II study investigating the effect of treatment with the chemotherapy drug cyclophosphamide in patients with severe to very severe ME/CFS.
    CycloME is an unblinded study in which all patients receive the drug.

    and

    So not even RCTs there...

    Any RCTs ongoing? Or non-RCT studies of anything likely?
     
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  2. Jo Best

    Jo Best Established Member (Voting Rights)

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  3. Cheshire

    Cheshire Senior Member (Voting Rights)

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    I am currently doing a list of ongoing trials for the Science Library (treatment and research), but it's very time consuming and complex!
     
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  4. ScottTriGuy

    ScottTriGuy Established Member

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    Perhaps @JaimeS may have some insight?
     
  5. Sunshine3

    Sunshine3 Established Member

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    Isnt ampligen still in the pipeline somewhere
     
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  6. Cornwall13

    Cornwall13 Established Member

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    Wonder if someone could help clarify things please.

    Is the CycloME Part A trial being published any time soon?

    Does the results from rituximab lower expectations for the results for cyclo?

    Also, what is the theory behind cyclo working in ME?

    Thanks
     
  7. Sasha

    Sasha Senior Member (Voting Rights)

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    Would you like to start a thread just to talk about the CycloME trial (which is very interesting now!)? :?

    I'd like to keep this thread focused on listing what's ongoing, if possible.
     
  8. Cornwall13

    Cornwall13 Established Member

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    Just created a new post
     
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  9. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Isn't someone in Norway trialling faecal transplants??
     
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  10. lycaena

    lycaena New Member

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  11. JaimeS

    JaimeS Established Member (Voting Rights)

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    So, Florida's group (Klimas et al) was doing genetics stuff last I checked, and they were gathering from 23andme. Not private info, they've been recruiting for this for awhile. So as far as I know, they are not testing drugs at this time.

    McGregor and Armstrong were also looking at genes and metabolomics last I checked. Again, not private -- just more expedient for me to tell you than for you to go hunting. So probably not drugs just now.

    VanElzakker is doing that neuroimaging study; so probably not drugs just now.

    Fluge and Mella will probably pivot to a new drug and may try something else in relation to Ritux as well. I feel that they'll continue the search for a commonality between responders. I think they already tried that with APRIL and BAFF, but they didn't come up with anything there. There was a small uptick in BAFF in patients overall, but no correlation between that and response to Ritux.

    Hanson doesn't seem to be doing drug trials either just now.

    This speaks very little of what researchers may choose to do in the future, just what they're engaged in right now.

    Weirdly, the research I'm closest to is the research I can't speak of. Hunt for Ron Davis quotes instead; Stanford is pretty picky about who represents their research to the public, which is understandable.
     
  12. Perrier

    Perrier Established Member

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  13. Sasha

    Sasha Senior Member (Voting Rights)

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    The article was about planned studies and was published in December last year. I don't think that means any of the studies are over.
     
  14. Trish

    Trish Senior Member (Voting Rights)

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    Jarred Younger: Low dose Naltraxone.
     
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  15. Jo Best

    Jo Best Established Member (Voting Rights)

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    Treatments are a goal of the gut research led by Simon Carding and Tom Wileman at Norwich Research Park (hub of the Invest in ME Research Centre of Excellence for ME). It wasn't on the agenda that I posted above but they've spoken publicly about the possibility of developing bacterial-based therapies and FMT. That's in addition to the rituximab research, for which their hypothesis is that autoimmunity in ME/CFS originates in the gut.

    This page links to the IiMER B-cell/rituximab and gut research:
    http://www.investinme.org/research-projects.shtml

    This is the intro page to the ME/CFS research at Quadram Institute (on Norwich Research Park):
    https://quadram.ac.uk/targets/me-cfs/
     
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  16. Trish

    Trish Senior Member (Voting Rights)

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    Do you know what is going to happen about the planned Rituximab trial, now that the big Fluge and Mella trial has proved null?
    @Jonathan Edwards?
     
  17. Sasha

    Sasha Senior Member (Voting Rights)

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    So currently ongoing we've got:

    • CycloME-B (Fluge & Mella)
    • LDN (Olli Polo + Younger's pilot)
    • B vitamins (Rekeland)
    • Immunadsorption (Scheibenbogen)
    • Faecal microbiota transplants (someone in Norway)
    • Ampligen (Hemispherx)


    The Ampligen trial started in 2005 and is open-label, with no control arm; it's unclear to me whether it's just a vehicle for allowing existing patients to continue therapy or whether it has any genuine scientific purpose.

    I couldn't find what therapy, if any, is being trialled in Fluge's study of impaired glucose metabolism and PDH.

    So in total, that's not much, considering the 17 million of us with no treatment and a quarter of us housebound or bedbound. :(

    A single, small pilot trial in the US plus whatever the heck that Ampligen trial is. Zero trials in the UK.

    Three of the seven trials in Norway, a country with 5 million people.
     
    Last edited: Nov 25, 2017
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  18. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    I am no longer involved but I do not think further trials of rituximab will be justified. We have a clear negative result.
     
  19. Sasha

    Sasha Senior Member (Voting Rights)

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    There's a thread now to discuss that here: https://www.s4me.info/index.php?threads/a-uk-rituximab-trial.1228/
     
  20. Perrier

    Perrier Established Member

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    Help!!!!! It's not fatigue!!!! it's a very sick feeling, sometimes like one is dying, weakness, toxic feeling, flu feeling, cognitive issues, OI etc.
     
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