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Jane Colby Tweet Forward ME

Discussion in 'General ME/CFS News' started by BurnA, Oct 18, 2017.

  1. BurnA

    BurnA Senior Member (Voting Rights)

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    Ok, it's just a tweet, but seeing as we are getting started here....





    ETA. Anyone know why that doesn't appear as a tweet but only as a link ?
     
    Last edited: Oct 31, 2017
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  2. Valentijn

    Valentijn Not a moderator

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    Probably needs a plugin ... can you add it to the thread for requesting features? :p
     
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  3. BurnA

    BurnA Senior Member (Voting Rights)

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    Done. :)
     
  4. Adrian

    Adrian Administrator

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    I will have a look for different addins over the weekend. I'm off work next week so can spend some time on set up things
     
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  5. BurnA

    BurnA Senior Member (Voting Rights)

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    Jane Colby is tweeting more positivity.


     
  6. Sasha

    Sasha Senior Member (Voting Rights)

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    This is what I get at that first link. Bit cryptic!

     
  7. Solstice

    Solstice Senior Member (Voting Rights)

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    Did anything about this pop up yet?
     
  8. Sasha

    Sasha Senior Member (Voting Rights)

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    I've been looking over the past few days (at Jane Colby's and the MEA's Twitter feed) and haven't seen anything.
     
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  9. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    I think that Charles Shepherd may have given us a little snippet of a sneak preview during the Q&A after the screening of Unrest by the UK ME/CFS Biobank.

    He was responding to questions about using the film to persuade the medical establishment that this is a real disease and to improve the lives of people with ME. He broke his response down to three veins: media, politicians and the medical establishment. The transcript of the relevant part is below.

    I'm sure I've also read or heard something in the last couple of days about changing the composition of the NICE review guideline panel (edited) but the source is eluding me.

     
    Last edited: Nov 4, 2017
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  10. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I remember Dr Shepherd saying this too, wasn't it at the London School of Tropical Medicine?
     
  11. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    I wondered about that but wasn't sure. If anyone can find that point in the video, I'd be happy to transcribe.
     
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  12. large donner

    large donner Senior Member (Voting Rights)

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    My issue is that this gives the BPS crowd three more years to pump out more shit just as Crawley has been doing and change the current NICE guidelines back to the same ones in three years or something even worse.

    If something is not fit for purpose why the F**k would you just carry on using it for three years?

    Doctor..."you have cancer, the current treatments are not fit for purpose but I am going to prescribe them for you for three years anyway"

    Bollocks!!!!
     
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  13. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    @large donner , it's Charles Shepherd's stated view that they are not fit for purpose. No doubt NICE's official stance would be that they were acting on the best evidence available at the time, blah, blah, blah.

    As far as I'm concerned, the BPS crowd can churn out all the crap papers they can manage and hopefully the SMC will continue to support them, although the recent reception of the SMILE trial might give them pause for thought. Meanwhile, the biological evidence mounts.
     
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  14. Solstice

    Solstice Senior Member (Voting Rights)

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    I reckon by 2020 we're gonna have 3 effective drug trials. Rituximab, cyclophosphamide, filgotinib. That would be absolute gamechangers.
     
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  15. Sasha

    Sasha Senior Member (Voting Rights)

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    I thought you'd made that one up, just to catch us out!

    But it's real: https://en.wikipedia.org/wiki/Filgotinib

    I've never heard of an ME trial on it, though - have I missed something?
     
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  16. Solstice

    Solstice Senior Member (Voting Rights)

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    By my knowledge it's being trialled for a number of diseases like ulcerative colitis, crohn's disease, RA but M.E. aswell. Can't however find the stuff about M.E. again. It's a Jak-1 inhibitor whatever that means.
     
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  17. Sasha

    Sasha Senior Member (Voting Rights)

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    After a bit of googling, I see that it was mentioned on another forum as something that Kenny de Meirleir was rumoured to be considering trying for ME/CFS but there's no information about a trial, AFAIK.
     
  18. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    I found the other reference to NICE at the UK ME/CFS Biobank / Unrest Q&A. It was by @Jonathan Edwards , not Charles.

    Thanks @Skycloud . I wouldn't have bothered searching if not for your memory.
     
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  19. MarcNotMark

    MarcNotMark Senior Member (Voting Rights)

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    There won't be an official trial by Galapagos / Gilead, these are the official indications:
    http://www.glpg.com/clinical-pipelines

    The idea is that it might be prescribed for de Meirleir's patients if (unofficial) tests are successful.
    Best case scenario for market launch is end of 2019.
     
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