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NICE announces next steps in updating its guideline on ME/CFS

Discussion in 'General ME/CFS News' started by Eagles, Feb 16, 2018.

  1. Eagles

    Eagles Senior Member (Voting Rights)

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  2. Valentijn

    Valentijn Guest

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    Dates of stuff happening:

    This sounds good:

    Learn what the fucking disease is, NICE. Even their own crappy criteria are better than this description:
     
    Melanie, AndyPandy, Barry and 10 others like this.
  3. guest001

    guest001 Guest

    I must say I tend to side with Invest's assessment... this will turn out to be a cynical exercise. They might move an inch but they won't ever give us the mile...
     
    JemPD, Awol, Melanie and 14 others like this.
  4. Andy

    Andy Committee Member (& Outreach when energy allows)

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    Would have been nice (haha, see what I did there??) for them to send these details out to the stakeholders directly.... :grumpy:

    ETA: Just sent an email asking when we will be informed officially.
     
    Last edited: Feb 16, 2018
    Binkie4, MEMarge, Awol and 16 others like this.
  5. Seven

    Seven Senior Member (Voting Rights)

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    If you all mobilized like it happend in USA and they knew we would not take garbage and said we would ask for review if they came up w garbage, you might be surprise. You just have to show you are strong as a unit ( ME) and watch and make very public and noisy complains, then you will get what you need.
    We sometimes understaimate the ME numbers, millions of plp do have power specially when loose on tweeter, Facebook and making noise and live difficult for them.
     
    ballard, Barry, Melanie and 8 others like this.
  6. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I am no genius but if they use ICC or IOM criteria and have PEM as mandatory, that will ensure ME patients are researched and not mixed in with other fatiguing illnesses. I feel numbers with ME are grossly exaggerated. The psych brigade can still play around with other variants of fatiguing illnesses and those in that category can fight their own battle. So the psych brigade are not losing out totally.
     
    Barry, Melanie, janice and 4 others like this.
  7. Trish

    Trish Moderator Staff Member

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    I would not wish the psychs involved in the whole BPS nonsense to be inflicted on any group, whatever the source of their fatiguing illness.

    The PACE trial was basically a fatigue trial, since it used the Oxford criteria whose only requirement is at least 6 months unexplained fatigue. The re-analysis of the data and the long term follow up on these patients showed the GET and CBT treatments didn't work.

    So we know that, whether fatiguing illness is caused by depression, unknown physical causes, or ME/CFS, nobody should have these treatments. They don't work for any of us.

    I'd be delighted if the psych brigade lost out totally on treating or researching fatiguing conditions of any description. They are not owed anything after the mess they have made and the harm they have done.
     
    ballard, MEMarge, Awol and 22 others like this.
  8. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    I don't know if it is the same in the USA but last time we had a Judicial Review into the NICE guideline. Was at the court and great support from patients inside and out. Didn't work though.

    http://www.meassociation.org.uk/2009/03/nice-statement-on-the-outcome-of-the-judicial-review/
     
    MEMarge, Barry, Melanie and 10 others like this.
  9. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    Has anything been mentioned about expenses being paid to those who will give their personal expertise as non-professionals or lay members?

    Nothing mentioned on the NICE join a committee page.
     
    MEMarge, Melanie, Louie41 and 2 others like this.
  10. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I am not saying they are owed anything, the fact is they can totally disable patients with ME with GET. We need to be separated from other fatiguing illnesses asap as lives are at stake, especially those of children. We are fighting a battle for ME patients, not every fatiguing illness under the sun.
     
    Barry, Melanie, ScottTriGuy and 6 others like this.
  11. ukxmrv

    ukxmrv Senior Member (Voting Rights)

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    They pay your expenses to come to meetings if you are accepted on to the committee. I do know of lay members getting other incidental expenses paid as well.
     
  12. James

    James Established Member (Voting Rights)

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    With any movement in criteria there must be awareness of the MUS diagnosis that is a fall back psychologization of any that do not yet meet stricter definitions but could if given inappropriate treatment regimes.
    Have no expectations that NICE will give anything more than political pressure dictates must happen.
     
    Awol, Barry, Melanie and 6 others like this.
  13. Trish

    Trish Moderator Staff Member

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    Thanks for clarifying what you meant, @Sunshine3. I think I misunderstood your point. Sorry.
     
    MEMarge, Barry, Melanie and 5 others like this.
  14. Keela Too

    Keela Too Senior Member (Voting Rights)

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    I have just finished filling in the Online system for my expenses.... I guess it might be easier second time around (if that happens), but it's a bit of a faff to say the least.
     
    MEMarge, Barry, Melanie and 10 others like this.
  15. Jan

    Jan Senior Member (Voting Rights)

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    Reviewing a wide range of evidence is pointless until they understand and accept that ME is a physical illness as per the IOM report. It cannot by treated with psych treatments which were designed to treat false illness beliefs.

    What is the point in reviewing all the crap studies done by Sharpe, Chalder, Crawley et al, they are all biased and use subjective outcomes and will obviously all say cbt get works for ME when most of the patients in the study probably didn't even have ME.

    There are virtually no trials of any other treatments, so if treatment trials are all they will look at, it's pointless and there seems no way we can win this.
     
    Barry, Melanie, Cinders66 and 8 others like this.
  16. Jan

    Jan Senior Member (Voting Rights)

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    Basically they need to accept the following points

    1. Both CBT and GET are ineffective as treatments for ME and can harm.

    2. There are no treatments for ME at this moment in time.
     
    Binkie4, MEMarge, Awol and 15 others like this.
  17. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    I received no alert about this which is unacceptable! I registered as a Stakeholder then was told by NICE HR that I was not permitted as a local/ regional group!

    I guess it will be worth muscling in on the May Scoping just to give them a hard time…..

    NICE is all about the noise, not any substance- it’s part of the machinery of the State- designed to limit service and save money.

    NICE will be given no autonomy or flexibility to “ do the right thing.’ They are cogs in a never ending wheel of democratic reduction for the ordinary citizen.......

    I still have not cracked the expenses claim online nonsense software...
     
  18. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    Hear hear Andy I will too!
     
  19. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    upload_2018-2-17_0-45-31.png

    An addendum- most of the statements in the bubbles I took from NICE's own literature on their website. (Say it and it is/will be done)- ....or not as the case may be...! I did it in preparation for the Engagement meeting.
     
    Last edited: Feb 17, 2018
    MEMarge, Jan, Melanie and 1 other person like this.
  20. Suffolkres

    Suffolkres Senior Member (Voting Rights)

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    upload_2018-2-17_0-47-19.png
    No guesses for what I am talking about here!
    ( I also posted this on thread about closure of East London Service)

    Oh how the mighty have fallen-

    "Barts and services linked to it such as an in Essex..." I learnt that funding was cut by the CCGs by 50% last year, when I was researching for our local dilemmas in Suffolk & Norfolk.

    In my view, the closure of services has nothing to do with NICE -(who I suggested might be/were a toothless giant in January) -NICE has become irrelevant or an excuse to marginalise patient- NICE is a very useful distraction to keep us occupied.
    NICE is largely ignored or cherry picked- it is no longer the powerbase in the department of Health..NHS England is the new kid on the block.

    it's about the privitisation of the NHS and the transfer of power and resource to CCGs and GPs.......

    The creation of the CCGs allowed for abdication of all that had been worked towards or achieved (both good & bad) since 2004 or 2004-all commitments and pledges made under PCT steer no longer have to be honored, in my experience.

    Some of the existing ME and CFS services have been consigned to Community Interest Companies - (on the behest of the Department of Communities and Local Government Social Enterprise Companies) - who only answer to Companies House where they are economical with the true about services, embroider facts or distorted in their annual returns- they are totally unaccountable...... The Executive's salaries are generous, just as so with the PCTS.

    They are Landsleys Legacy- and I have become totally disillusioned by it all after 20 years of fighting the system. At least Labour tried with the Long term Conditions Framework. That should some commitment.

    At the end of the day it's all about politics, power and patients are a nuisance, especially ME and CFS patients and carers. Is it any wonder why we are seeing a dwindling of the specialists doctors we so desperately need?

    With CCGs we will see a total annihilation of most services.

    We will just have to learn to fend for ourselves as best we can.
    And I didn't even consider the "B" word!..... and I don't mean Boris...
     
    Last edited: Feb 17, 2018
    MEMarge, Arnie Pye, Jan and 3 others like this.

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