Invisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You're not alone. Jody Smith sheds a little light to make it more visible
Discuss the article on the Forums.

GETSET (white) in Lancet 22/06/17

Discussion in 'Latest ME/CFS Research' started by Esther12, Jun 22, 2017.

  1. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    Thought this probably deserved a new thread:

    Lancet article: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)32589-2/fulltext

    Lancet commentry: http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(17)30577-9/fulltext

    Science Media Centre coverage:

    http://www.sciencemediacentre.org/e...a-treatment-for-chronic-fatigue-syndrome-cfs/


    http://www.telegraph.co.uk/science/...e-syndrome-study-shows/?WT.mc_id=tmg_share_tw
     
    simeyss, svetoslav80, Hutan and 7 others like this.
  2. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
  3. Large Donner

    Large Donner Senior Member

    Messages:
    848
    Likes:
    3,735
    So there we have it, thats the current evidence NICE will use to determine that there does not need to be a review of the current treatments because the latest evidence backs up the previous evidence. Job done and perfectly timed publication for the BPS crowd just before the NICE review proposal.

    This just sounds like pacing dressed up and presented as GET because they tell you at the beginning of the trial to reduce all activity down way below your current amount then build up gradually. Then at the end of the 12 weeks they say "hey you are doing so much more than 12 weeks ago would you like to agree with me cos I've been so nice to you and concerning over the last 12 weeks, just sign here to rate the course and the facilitator from 1-10.

    All they seem to have achieved is to get people back to baseline after first reducing their activity down at the start of the trial. No doubt they don't take into account how many of the activities of daily living where reduced during the trial to accommodate any extra exercise.
     
    Last edited: Jun 24, 2017
    Manganus, simeyss, justy and 30 others like this.
  4. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    Lets not just assume NICE will be keen to use this as a reason to not review their guidelines... we've got plenty of fight in us yet. The battle has just begun!
     
  5. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,785
    Mid-Ohio Valley, United States
  6. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,785
    Mid-Ohio Valley, United States
     
    simeyss, Jo Best, Esperanza and 10 others like this.
  7. Large Donner

    Large Donner Senior Member

    Messages:
    848
    Likes:
    3,735
    The problem is can you come up with a single accepted scientific advancement in the treatment for ME since the last NICE review.

    Everything that is being studied is still in the pipeline including things like rituximab so I can only see NICE not budging form their current recommendations to be honest.
     
  8. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    But there have been a number of papers challenging the quality of research used to underpine the NICE recommendations. I'm not expecting NICE to discover some new treatment, but we might be able to get them to acknowledge that there is not good evidence to support their recommendations of CBT or GET. Nothing is better than something.
     
    medfeb, simeyss, Hutan and 9 others like this.
  9. Large Donner

    Large Donner Senior Member

    Messages:
    848
    Likes:
    3,735
    Your problem there is that you are applying too much obvious logic.

    Can you really see NICE taking on the Lancet and also their own part they have played over the last numerous years and saying, "hey all this GET and CBT stuff has always been useless and even often harmful, get me a hotline to Theresa May and the DWP.... and who's that guy who runs the retraction blog we need to contact him .......we need to fire Richard Horton and the PACE trial must be retracted."

    It stands to reason that if NICE retracts CBT and GET from its recommendations the PACE trial would have to be retracted from the Lancet and NICE would have to answer to PWME for all the wasted years and potential harm they have caused.

    The true data from the PACE trial shows that CBT and GET the long standing treatments for ME recommended by NICE do not work and have never worked. NICE would be taking themselves down and I just cant see them doing that, it would just lead to one big cluster fuck and theres no way they will be allowed to do that.
     
    Orla, Esperanza, Cornishbird and 2 others like this.
  10. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    I agree with msot of what you say. Odds are against us, but it would be a game changing victory if we could achieve it.

    Also, with so many people in medicine talking about the need to listen to patients more, concern about poor quality research, recogntion of how over-treatment can harm... surely there are some people with authority who actually believe what they're saying, and are willing to stand up for what's right. We just need one of these authority figures to flip, and then most of the rest will crumble imo.
     
  11. Large Donner

    Large Donner Senior Member

    Messages:
    848
    Likes:
    3,735
    Logic.

    Hope.
     
    Invisible Woman and Esther12 like this.
  12. JaimeS

    JaimeS Senior Member

    Messages:
    3,192
    Likes:
    11,785
    Mid-Ohio Valley, United States
    Ehhhh if they shift their stance, they'll say "best available information at the time..." "new scientific evidence shows..."

    If they're got a head on their shoulders, anyhow.

    What I EXPECT of them is that they will prefer any alternative to saying "actually, we have no idea how to help." There is little evidence for new treatments, even if there is abundant evidence of biological abnormalities, and treatment recommendations are what concerns us.

    I think the individuals at NICE probably believe recommendations to exercise and think happy thoughts are pretty harmless even if they aren't particularly effective. (Because they're not us, and therefore they don't read about the PACE debacle. One repeated theme I've found on PR is that we wildly underestimate others' ignorance. Important to us =/ important to the rest of the world.)

    Whatever they choose won't make or break them with anybody but us. Perhaps they will change their minds, but if they do, it will be a shot heard 'round... the ME/CFS scientific and patient community. ;)

    -J
     
  13. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,522
    Luther Blissett and Daisymay like this.
  14. Large Donner

    Large Donner Senior Member

    Messages:
    848
    Likes:
    3,735
    @JaimeS

    The thing is by admitting, "the best available evidence at the time was" they would have to use the PACE trial as proof that GET and CBT dont work, as we here all know.

    If they shift to "the best new evidence is" what else can they use from peer reviewed studies apart from the must be retracted PACE trial, thats how they work at NICE.

    They either use the PACE trial to say GET and CBT work or GET and CBT dont work as the PACE trial did not form part of their previous decision to recommenced CBT and GET.

    If they say the PACE trial proves CBT and GET dont work then that will have to lead to a retraction of the PACE trial as published in the Lancet.

    I just cant see NICE, which is part of the UK establishment, retracting their current recommendations which would have to follow with an obvious retraction from the Lancet of PACE.
     
    Manganus, Invisible Woman and JaimeS like this.
  15. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

    Messages:
    1,197
    Likes:
    4,390
    Treating ME, MS and Parkinsons over Skype.. There should really be laws regulating ludicrous publishing
     
    lemonworld, AdamS, Esperanza and 11 others like this.
  16. NelliePledge

    NelliePledge plodder

    Messages:
    770
    Likes:
    3,487
    GETSET
    Get lost:bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head::bang-head:
     
  17. RogerBlack

    RogerBlack Senior Member

    Messages:
    883
    Likes:
    2,864
    “In absolute terms, around 1 in 6 patients noticed a positive change overall compared to 1 in 20 patients not receiving the intervention and nearly all the secondary outcome measures were also positive.".

    So, not 1/6, but 1/9 patients noticed a positive change compared to control.
    And that positive change was _tiny_, in terms of clinical response and on subjective measures.
     
  18. Dolphin

    Dolphin Senior Member

    Messages:
    10,671
    Likes:
    28,172
    This doesn't look like it is true.

    http://www.isrctn.com/ISRCTN22975026

     
    justy, Snow Leopard, Roy S and 11 others like this.
  19. Large Donner

    Large Donner Senior Member

    Messages:
    848
    Likes:
    3,735
    How do you get to 1/9 from 1/6? What am I missing?
     
  20. RogerBlack

    RogerBlack Senior Member

    Messages:
    883
    Likes:
    2,864
    About 1/6 - 1/20.
     
    Luther Blissett likes this.

See more popular forum discussions.

Share This Page