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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. Countrygirl

    Countrygirl ME is not MUS

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    This petition is to run for a week, so please sign NOW.


    https://www.change.org/p/petition-t...fit-for-purpose-and-needs-a-complete-revision

    This is the wording from the petition:


    Here is the quick comment I added with my name:

    The NICE guidelines are not merely not 'fit for purpose' but their application causes harm......often severe harm........to patients. There is no scientific evidence that CBT improves ME on follow up while GET damages patients. Three studies of a total of 5 000 patients revealed that over 75% suffered harm, often severe harm, from GET. Mildly affected patients became bedbound as a result of management strategies recommended by NICE. If a pharmaceutical drug was associated with so much harm, it would be immediately withdrawn. NICE urgently needs to acknowledge the emerging international scientific evidence that clearly contradicts the use of GET that they continue to promote and until they do they are responsible for harming patients with this devastating illness. Recent studies have provided further proof of the characteristic feature of intolerance of exercise, which is the main feature of this disease: calibrated exercise on a bicycle ergometer on two consecutive days indicates clear difference in muscle metabolism between ME patients and healthy sedentary controls . In ME patients the 'anaerobic threshold' lowers on the second day whereas it increases in controls. Hence enforced and increasing levels of exercise as recommended by NICE can only damage the ME patient and does cause many to become bedbound. Similarly electrical stimulation of the patient's muscle in vitro reveals severe impairments of metabolism which are not seen in healthy controls. It is entirely unethical of NICE to continue to ignore the international science when their ongoing failure to change the guidelines is causing so much physical harm and distress to a large number of patients.
     
    Last edited: Jul 10, 2017
  2. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Signed and left comment about my experience of GET
     
  3. daisybell

    daisybell Senior Member

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    Done - signatures being added quickly at the moment - 200 and counting.
     
  4. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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  5. Barry53

    Barry53 Senior Member

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    Signed! This one is so very important. Commented along with signing, but not sure if visible. My wife will do so later today.

    Still can't see my comment, so in case it does not appear, this is what I said:-
     
    Last edited: Jul 10, 2017
  6. Sean

    Sean Senior Member

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    Can non-UK people sign?
     
    Luther Blissett likes this.
  7. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

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    Yes, Change.org allows for international signing. Whether the MEA intended for non-UK people to sign is something I don't know though.
     
  8. Countrygirl

    Countrygirl ME is not MUS

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    I have left a message for the MEA to ask if people from outside the UK can sign.

    Perhaps you could try and see what happens?
     
  9. Countrygirl

    Countrygirl ME is not MUS

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    339 signed now.

    We need thousands to sign.

    Please share and ask friends and family!
     
  10. Hutan

    Hutan Senior Member

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    Well, the NICE guidelines affect those of us overseas too, especially in Commonwealth countries. A revised NICE guideline might give Cochrane pause for thought, and that would definitely help.

    So I reckon, sure, sign. Change.org asks for your country, presumably these will show.
     
  11. charles shepherd

    charles shepherd Senior Member

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  12. Solstice

    Solstice Senior Member

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    Signed, though not English.
     
  13. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Up to 537 now :)

    Time to call on the extended family
     
  14. charles shepherd

    charles shepherd Senior Member

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  15. Valentijn

    Valentijn Activity Level: 3

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    Since it's national, I'd think they only want UK signatures.
     
    Luther Blissett and MEMum like this.
  16. Countrygirl

    Countrygirl ME is not MUS

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    We do need the names of the 'nominated expert reviewers' as well as those of the 'review team'. Do they include the usual culprits by any chance? Who exactly 'nominated' them?
     
  17. Countrygirl

    Countrygirl ME is not MUS

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    Please @charles shepherd would you clarify if people from other countries can sign as I think they are doing so at the moment?

    Thanks.
     
  18. Countrygirl

    Countrygirl ME is not MUS

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    632 now.

    Can we make it a thousand by this afternoon?

    Time to start sending emails round the country. :):hug:
     
  19. charles shepherd

    charles shepherd Senior Member

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    I think it would be perfectly reasonable to allow anyone who has ME/CFS (or cares for someone with ME/CFS), and has taken an interest in the NICE guideline on ME/CFS, to sign this MEA petition.

    NICE guidelines are referred to all over the world - so they can influence how countries outside the UK proceed with guidance and recommendations on the management of ME/CFS.

    CS
     
  20. Sean

    Sean Senior Member

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