The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
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Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Jul 10, 2017.

  1. Dechi

    Dechi Senior Member

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    Done
     
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  2. charles shepherd

    charles shepherd Senior Member

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    We are still waiting for a meaningful response from NICE on membership of the 'expert' group that has carried out the review of existing evidence and concluded that 'no update' of the 2007 guideline is required

    This request is also the subject of a Freedom of Information request

    CS
     
    ukxmrv, MEMum, Somer and 16 others like this.
  3. Countrygirl

    Countrygirl ME is not MUS

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  4. slysaint

    slysaint Senior Member

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    As the deadline has been extended can you remove the line on your first post that says it's only for a week, or change something in the title?
     
  5. Countrygirl

    Countrygirl ME is not MUS

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    That is a good idea @slysaint .

    However, I have tried but the title tool thingy has disappeared. It will need a mod to change it, I think.

    @Sushi @Kina Please could you add the extended date Friday 21st July to the title please? Thanks! :thumbsup:
     
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  6. arewenearlythereyet

    arewenearlythereyet Senior Member

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    @charles shepherd is anyone at the MEA able to compile a summary of the comments left in the petition ? I think it would add weight to the overall message across if there is time and resource. I was thinking along the lines of "42% specifically mentioned GET" and " of these there were 1500 individual comments stating they had got worse as a result of the treatment". I just made those up...but you get the sort of thing.

    Attributing numbers to comments, although anecdotal could add a lot of weight to the message.

    Apologies if you have already thought of this/ have actioned. Just thought I would suggest it.
     
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  7. Countrygirl

    Countrygirl ME is not MUS

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    While we wait for the MEA's petition to top 15 000, here is an article written about his views of the petition by Greg Crowhurst and why he won't sign it . As many of you know, Greg has loyally nursed his very severe ill Linda for many years and has also written a book on caring for the severely ill.

    This is the thought-provoking article which he wrote yesterday.

    (In my opinion, we have to pick our battles and fight them at the appropriate time, and it is necessary to be prepared to lose a few in order to win the war....eventually. )


     
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  8. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I agree we do need to pick our battles. This petition is about NICE guidelines and only NICE guidelines. It is not about:

    Changing how NICE Operate
    Setting a specific agenda for medical research
    Changing the name or reclassifying the disease

    ..it's a bit like cutting your nose off to spite your face to not sign unless the MEA gives them the world in a cup. No petition can possibly encompass all of those things and nobody has a magic wand to correct everything all at once.

    The phrasing of the name is specifically for the NICE guideline debate? I genuinely have every sympathy for their predicament but something is better than nothing in my book which is why I signed and got 20 of my family to also sign.

    They make some critical good points and some other points that are vague, contradictory and intangible. It sounds like they will never be satisfied. A quality I admire, but sometimes, you do need to make compromises to move forward.
     
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  9. Kina

    Kina Moderation Team Lead

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    The title is at the maximum # of characters allowed by the software -- to add the extended to date, I will have to remove something.
     
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  10. Countrygirl

    Countrygirl ME is not MUS

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    Hi @Kina .

    Thanks!

    I suggest the word URGENT can be deleted now. Can we replace it with 'Closing 21st July' at the end of the heading? Will that fit? We still need ALL COUNTRIES I think, but could omit the two THEs if there are still too many letters.

    Does that work?
     
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  11. slysaint

    slysaint Senior Member

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    Sorry @Countrygirl not trying to muscle in but just looked and we are now at 12,000:balloons::balloons::balloons:
     
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  12. arewenearlythereyet

    arewenearlythereyet Senior Member

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    It must of been the change of title that did it :thumbsup:
     
  13. Countrygirl

    Countrygirl ME is not MUS

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    Wow!

    I was caught failing in my duty! :redface: (been sidetracked with an email from someone with ME who has been informed by the DWP that they have been told by their 'expert' that she must start to build up her her 'activity' which will cure and get her back to work in 18 months. ! This will enable them to stop her benefit. Cure yourself in 18 months or else! )

    Okay @slysaint . You do day duty and I cover the nights. Insomnia has to come in useful at times.:sleep::ill:
     
  14. Countrygirl

    Countrygirl ME is not MUS

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    Thanks @Kina.
     
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  15. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    :mad:
     
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  16. BurnA

    BurnA Senior Member

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    They do have some good points.
    The petition does seem poorly worded - there was probably no need to have some much detail in there at all.

    For example
    • We want NICE to remove Graded Exercise Therapy as the recommended treatment for patients who are moderately affected and to place an appropriate health warning against general use of this therapy in CFS/ME specialist clinics

    Why only moderate patients?

    And why not CBT too?

    (And there was no need to call it CFS/ME.)

    Anyway I guess the intent is to provoke discussion, and hopefully a review.
    But the demands would need to be carefully worded if a review takes place.




     
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  17. MEMum

    MEMum Senior Member

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    I guess they are most concerned about removing GET, as it has the clearest evidence of harm from patient reports and science.
    Anything that tells NICE bosses that they need can't just shelve a comprehensive review indefinitely is key.
    Trying to explain that the Psych/PACE CBT model is wrong as it has the premise "You are deconditioned and your unfounded fear of exercise" is keeping you ill, is probably too complex.
    Sorry this post is probably confusing, feel free to ignore, too many painkillers.
     
  18. Countrygirl

    Countrygirl ME is not MUS

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    Just received this in my inbox:


    And this is her answer
    [​IMG]Lord O'ShaughnessyThe Parliamentary Under-Secretary of State for Health
    I know that the noble Countess feels passionately about this issue, but she will know that it is only right for me to say that we need to be guided by evidence that is collected in clinical reviews. A review is being carried out by NICE at the moment and we shall wait to see the results of that before deciding what needs to happen as a consequence in terms of the kinds of treatments that are appropriate for those suffering from ME.
     
  19. Countrygirl

    Countrygirl ME is not MUS

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  20. slysaint

    slysaint Senior Member

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    Except it isn'to_O
     
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