Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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New Times article on NICE (mostly good)

Discussion in 'General ME/CFS News' started by Orla, Sep 24, 2017.

  1. Orla

    Orla Senior Member

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    Ireland
  2. aaron_c

    aaron_c Senior Member

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    I can't seem to comment. Is anyone else having this issue? Perhaps only paying customers can comment?
     
    Joh likes this.
  3. Orla

    Orla Senior Member

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    I didn't try to comment yet. I tweeted a thanks to Tom Whipple anyway, hopefully to encourage him to cover this again.

    I was a bit :( to see that the NICE recommendations might not be changed til 2020, if they are changed.
     
  4. AndyPR

    AndyPR RIP PR :'(

    Try reloading the page. I'm registered with the Times but not as a paying customer and initially I didn't have a comment box available to me, I clicked through to read their community guidelines and after using my browsers back button to return to the article the comment box was there, so it might be that a reload will help.

    ETA: I have successfully commented on the article.
     
    Last edited: Sep 25, 2017
    Mary, Esperanza, Orla and 8 others like this.
  5. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    If you do want to comment on the article by registering but not paying be careful - you are only allowed 2 article accesses a week. I made the mistake of trying to go back to the same article later - this counts as the 2nd article, and the guidelines you have to read before commenting seem to count as a third, so I was locked out.
     
    Woolie, Esther12, Barry53 and 2 others like this.
  6. AndyPR

    AndyPR RIP PR :'(

    You aren't allowed back in to view something you have viewed already?
     
    Invisible Woman likes this.
  7. trishrhymes

    trishrhymes Save PR. Sack the President of the Board.

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    Nope, I've viewed it twice and am now told 'you've reached your article limit' I have the choice of waiting until next week or paying.
     
  8. Joh

    Joh Inactivist

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    Wow, that's a real bummer! Had no idea it could take that long! Just wrote a hopeful info for a German ME newsletter that the NICE guideline update might help us to apply pressure to get our guideline updated too. Is that timeframe normal? I can't imagine that people with other diseases are told to wait for over 2 years for updated treatment recommendations that do no harm ("In the meantime just carry on taking this toxic drug that makes you bedridden").
     
    Woolie, Orla, TiredSam and 6 others like this.
  9. AndyPR

    AndyPR RIP PR :'(

    :(
     
    Barry53 likes this.
  10. BurnA

    BurnA Senior Member

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    I think this is good news.
    Allows plenty of time for the Rituximab trials to be included.
     
    Londinium, Esperanza, Orla and 9 others like this.
  11. Daisymay

    Daisymay Senior Member

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    Well if it's to take that long, in the interim they really need to withdraw them completely or post a HUGE caveat and inform ALL doctors, physios etc. if not then they are continuing to put patients at risk and completely failing to get fully informed consent from patients, which is necessary in law. Plus they'd be in breach of ethical issues as brought up by the American professor whose name I'm sorry I can't remember, but who collaborated with Forward ME.
     
    Mary, JaimeS, JohnM and 13 others like this.
  12. Solstice

    Solstice Senior Member

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    Lubet?
     
  13. Daisymay

    Daisymay Senior Member

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    Ah, found her name, Prof O'Leary.
     
    JaimeS, Invisible Woman and Solstice like this.
  14. Mrs Sowester

    Mrs Sowester BRING BACK KINA

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    This is good coverage, well placed to reach the medical professionals we need to target with information.
    Thank you to Tom Whipple.
     
  15. slysaint

    slysaint Senior Member

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    My favourite comment so far:
    "
    Ken Broadbent 3 hours ago
    "Trudie Chalder, professor of cognitive behavioural psychotherapy..." Is convinced CBT works. She's hardly impartial. Like saying Count Dracula favours regular blood letting...

    "
     
    simeyss, Mary, Rick Sanchez and 18 others like this.
  16. alex3619

    alex3619 Senior Member

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    That kind of delay might mean the Rituximab results, and maybe some more Cyclophosphamide results, will be available.
     
  17. alex3619

    alex3619 Senior Member

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    It has never been the case that bureaucracy does anything about ME in a timely fashion, at least so far. They haven't even got the name right for nearly three decades!

    How long did it take for the CDC to stop recommending CBT/GET? Have they done that even now, as I think the doctor education material might still not be updated? The Mayo clinic had a chance to do so recently and failed.
     
    simeyss, JaimeS, Esperanza and 4 others like this.
  18. Countrygirl

    Countrygirl I'm with Cheesus

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    I can confirm @trishrhymes experience. I just tried to do the same and find I too am locked out. :(
     
    Orla, Joh, Mrs Sowester and 1 other person like this.
  19. Hilary

    Hilary Senior Member

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    Good article but I can't comment either -I'm just a 'registered user' not a paying customer - grrrr annoying as there are some pretty crass comments I'm itching to respond to:mad:. No doubt lots of others are too....... My guess is they want our :moneybag::moneybag::moneybag:
     
  20. Joh

    Joh Inactivist

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    True. But until we have breakthroughs (like Ritux, Cyclo or something else) or a biomarker, I was rather hoping for some very basic stuff that would already be revolutionary for us, like "Treat sleep, pain and POTS. Don't reject testing and referrals. PEM is real, don't make your patient with ME overexert. CBT is not a cure for ME, it can only be used as support to adapt to a new life."

    And it'll take some more years to get the guidelines in other countries to follow up at least some of the changes in the English guideline, that would be more like 5 years from now. Had hoped for faster support by guidelines that all pwme can at least get basic treatment and don't need to luck out with their GP to be taken seriously and not be harmed by CBT/GET.
     

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