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PACE and NICE guidelines raised in Parliament NOV 2016 MORE

Discussion in 'General ME/CFS News' started by slysaint, Nov 24, 2016.

  1. slysaint

    slysaint Senior Member

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    Kelvin Hopkins Labour, Luton North
    To ask the Secretary of State for Health, with reference to the PACE trial, Pacing, graded Activity and Cognitive Behaviour Therapy, if he will ask NICE and the NHS to revise their approach to treating myalgic encephalomyelitis to removing references to Cognitive Behaviour Therapy and Graded Exercise Therapy.

    [​IMG] Nicola Blackwood The Parliamentary Under-Secretary of State for Health
    The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for ensuring that its guidance remains up to date. NICE has advised that it has brought forward the next review date for its guidance on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis from 2019 to 2017 to coincide with the expected publication of relevant new evidence.

    NICE’s aim is to make a decision on whether an update of the guideline is required by the end of 2017.
     
    justy, Jo Best, Barry53 and 22 others like this.
  2. John Mac

    John Mac Senior Member

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    Glad to see questions are being asked in Parliament even if they are just being brushed off.
    Let's hope Kelvin Hopkins sticks at it.
    Perhaps some thank you emails to him might help.

    hopkinsk@parliament.uk
     
    Last edited: Nov 24, 2016
    justy, Jo Best, actup and 14 others like this.
  3. Keela Too

    Keela Too Sally Burch

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    Brilliant that the question has been raised. They must be getting the message by now!

    Wonder if the expected new evidence is the publication in a peer reviewed journal of the PACE reanalysis. I can dream!
     
    justy, Jo Best, actup and 7 others like this.
  4. user9876

    user9876 Senior Member

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    The question should also be what are the dept of health doing to act on misleading information about treatments from qmul. What actions they will take over the use of public money to cover up the misleading of patients and what will they do to ensure that the clinical commissioning groups have accurate information about such techniques
     
  5. slysaint

    slysaint Senior Member

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    Just occured to me that this might be an opportunity to tell him about MAGENTA and FITNET and that there is currently a petition ie stop-get. He could raise the question about at least getting the trials suspended until publication of the reanalysis of PACE. http://www.stopget.org/sign-now/about-us/

    Maybe if several of us emailed him?
     
    Jan, Jo Best, Countrygirl and 7 others like this.
  6. Esther12

    Esther12 Senior Member

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    I wonder if this is what prompted the edit to the NICE website?
     
    Binkie4 likes this.
  7. Hip

    Hip Senior Member

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    That is good news. It sounds to me like they are awaiting the results of the Fluge and Mella phase III rituximab clinical trial, the outcome of which will be known in 2017.

    I am guessing that if the phase III rituximab trial shows that rituximab puts into full remission and clinically improves a substantial percentage of ME/CFS patients (as the phase II demonstrated), then it will become untenable to view ME/CFS as a psychologically caused disease, and therefore untenable to treat it as such. So the NICE guidelines will have to be completely rewritten.


    What I'd like to know is if the phase III results in 2017 are similar to what is being achieved by Kolibri Medical, Norway, with their private patients — Kolibri says that rituximab treatment cures ⅓ of ME/CFS patients, makes an improvement in another ⅓ of patients, and has no effect in the final ⅓ of patients — how long will it then take before the UK NHS are able to offer rituximab treatment to ME/CFS patients?
     
  8. Esther12

    Esther12 Senior Member

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    Didn't one of the Rituximab researchers recently warn at a conference that the trial may not show evidence of benefit over placebo? If it is that word of results is starting to leak out in advance of publication, I wouldn't expect such positive results.
     
    worldbackwards likes this.
  9. British Establishment has backed the Wesselities to the hilt, they can't change their tune without great loss of face and power, so they WON'T, without a hell of a lot of reasons to do otherwise.
    See how they have behaved in the past: they NEVER relent without overwhelming support against them and they NEVER punish the guilty and help the victims until they've denied it all the way to 90% of the victims' and criminals' graves and the Public have lost interest (or at least the crap won't affect the current government in office too badly no matter what scumbags did in years past...and by such support of abuses, crimes and stupidity, almost every government has been an accessory after the fact to a catalogue of crimes).

    By giving Wessely two honours from "The Queen's Hand", the Establishment have set out their agenda and position in concrete...to shore up their weakening evil lying bullshit house of cards.

    Only advantage we have is this government is so weak and screwed up that sufficient Public protest may have an effect above the norm.
     
    justy, Jo Best, actup and 7 others like this.
  10. Hip

    Hip Senior Member

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    Would you have a link? I never saw that.
     
    BurnA and worldbackwards like this.
  11. Esther12

    Esther12 Senior Member

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    Looks like this refers to it? Sorry, forgotten details:

     
    Hip likes this.
  12. Hip

    Hip Senior Member

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    Would you know if that comment was tweeted by Mella, or originated with Mella? I am not very familiar with Twitter, and always find it confusing figure out which tweets in a Twitter account are said by which people.

    I find that both Twitter and Facebook are not very "brain fog friendly"!
     
    Mel9, MeSci and Esther12 like this.
  13. user9876

    user9876 Senior Member

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    The comment may not mean anything beyond a warning that because it is a trial the results are uncertain. I assume until the trial finishes they don't actually know.
     
  14. Esther12

    Esther12 Senior Member

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    It was a tweet from PR's representative at the IACFSME conference, reporting on what Mella said.

    Yeah, I wasn't sure when the trial was coming to an end. If others are assuming NICE has got word of the trial results, then that would be unlikely to be a positive sign.
     
    Hip likes this.
  15. Jo Best

    Jo Best Senior Member

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    I'd be surprised if "the expected publication of relevant new evidence" refers to the Norwegian trial, partly as I don't think the paper will be published until 2018 although with the time it takes to undertake the NICE review that may well tie in, but mainly because NICE recently said they take less notice of research done outside UK. On the subject of a UK rituximab trial, I started a thread with a recent update by UK charity Invest in ME Research. Their trial began with B-cell research in progress at UCL (first paper published, now on next phase) and the trial is planned to take place in Norwich, the base for the Invest in ME Research Centre of Excellence for ME. The UK researchers have been working all along with their colleagues in Norway (and other European countries). Fane Mensah is in Bergen now (and was also at IACFS) and Dr. Fluge and colleagues are visiting Norwich in January. Here's the thread - http://forums.phoenixrising.me/index.php?threads/uk-rituximab-research-update.47932/
     
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  16. Jo Best

    Jo Best Senior Member

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  17. Esther12

    Esther12 Senior Member

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    No.

    Fingers crossed it's not that Crawley has great news about the Lightning Process.
     
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  18. Hip

    Hip Senior Member

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    I read that the results of the trial will be made known in 2017, even though the study will not be formally published until 2018.

    NICE seem to be saying contradictory things (or changing their mind), because the last comment NICE made, which I read on these forums somewhere several weeks ago, was that NICE were not going to review the ME/CFS guidelines at all, because they said there were no studies underway anywhere in the world that would have any bearing on the ME/CFS issue.

    But now they are saying they will consider revising the ME/CFS guidelines in the light of an unspecified study whose results will become available in 2017.
     
    Last edited: Nov 25, 2016
    Jan, actup and Jo Best like this.
  19. Jo Best

    Jo Best Senior Member

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    Yep, contradictory. I think what NICE decided to do was to bring forward their review of whether ME/CFS should be taken off the static list. I doubt they'd take notice of the Norwegian results until they're published. I was thinking this is more likely but didn't to tempt fate...

     
    ukxmrv and justy like this.
  20. worldbackwards

    worldbackwards A unique snowflake

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    This is what NICE say
    https://www.nice.org.uk/guidance/cg53

    It won't be anything to do with Rituximab. They are unlikely to speculate on a trial that is incomplete anyway. It'll be to do with the reanalysis. I suspect it won't make much difference, but they might tone down their enthusiasm for something that doesn't work.
     

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