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UK, London: RECRUITING NOW: SAFFE trial on enhancing slow-wave sleep in CFS using Xyrem

Discussion in 'Active Clinical Studies' started by Sasha, Jun 8, 2015.

  1. SOC

    SOC Senior Member

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    I agree. Anything decent is better than nothing. We have to make forward progress even if it's small and/or relatively minor in terms of overall impact on the disease.

    My frustration is that research money is being spent on side issues when we don't have the research funding for the main, core issues. Shouldn't THAT come first? Shouldn't the focus at this point be on finding out what this illness really is, getting biomarkers, addressing things closer to the root? Then we can work on the secondary details. Poor sleep is not at the core of ME/CFS. That isn't to say that improving sleep wouldn't make a lot of us feel better. I know that sleep meds have made my life more bearable. But sleep meds already exist. Most of our top specialists know which ones work best for PWME. It's just a matter of using them. I know that doesn't happen in the UK, so this research may help patients in the UK get better treatment for sleep disorders related the ME/CFS. That's good, but it's not a big thing in the overall progress in ME/CFS research.

    I'm grateful for all the decent research dribs and drabs we get, but I'm also a bit angry that I have to be grateful for these relatively piddly research projects. It feels like being grateful for getting a half cup of rice to eat every day. If you're starving, the half cup of rice is a big deal, but it's not really what you need and it's not solving the real problem of why you're starving. I'm frustrated that we're getting these dribs and drabs instead of the major research we really need. We deserve better.
     
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  2. Sasha

    Sasha Fine, thank you

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    In the UK, we don't seem to have strategic initiatives focused on particular diseases. I believe that's what we need for ME but we don't seem to have it.

    As a result, you get individual researchers coming up with ideas within their own expertise and field of interest (presumably sleep, in this team's case) and they apply for funding for their idea and they get it according to whether it looks good as an individual project. I think that's why it's looking piecemeal.

    In the US I think things look more strategic because you have there some teams that have attracted large-scale private funding to an extent (OMI, Columbia) and have brought together teams to follow those strategies.

    That's my impression of it, anyway.
     
    leokitten, justy and SOC like this.
  3. Sasha

    Sasha Fine, thank you

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    More about the trial

    https://www.facebook.com/groups/5804522506/permalink/10152971506522507/

    Or call;
    07599 948053

    More info:
    http://www1.imperial.ac.uk/…/brai…/psychopharmacology/saffe/
     
    ukxmrv and Valentijn like this.
  4. Scarecrow

    Scarecrow Revolting Peasant

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    Sasha likes this.
  5. greeneagledown

    greeneagledown Senior Member

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    Anyone have any idea whether this trial is getting past the recruitment hurdles it's experienced? @Sasha, have you heard anything?

    I love the idea of trying Xyrem in ME/CFS. I doubt it would do much for PEM or physical fatigue, but it might do wonders for both unrefreshing sleep and cognitive dysfunction.

    I wish they'd made it easier for patients to participate. I wouldn't have included any of the sleep study crap. They should have just given people the drug (or placebo) to take home, and then had them come in and take questionnaires to see if they're doing better. Knowing how their sleep structure would change would certainly be interesting, but all we really care about is whether the drug is helping symptoms.
     
  6. Sasha

    Sasha Fine, thank you

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    No, I'm not in any kind of loop with this.
     
  7. Snow Leopard

    Snow Leopard Hibernating

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    I disagree, I'd rather see a more rigorous study, than yet another questionnaire based study.

    I'm not convinced Xyrem will have any effect on fatigue and other symptoms, but may be helpful for sleep. It's not an exciting outcome, but I'd rather see more clinical trials, than less.
     
    Scarecrow and Sasha like this.
  8. greeneagledown

    greeneagledown Senior Member

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    I hear you, but the problem is that the rigor seems to be hampering the study's ability to recruit subjects.
     

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