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Call for suspension & scientific review of CFS NICE guidelines

Discussion in 'Petitions' started by MeSci, Feb 10, 2013.

  1. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Cornwall, UK
    e-petition to UK Government:
    Calling for suspension & scientific review of the Chronic Fatigue Syndrome (CFS) NICE guidelines (CG53) following the failure of the PACE trial

    Responsible department: Department of Health

    The PACE trial was set up to evaluate the current use of cognitive behavioral therapy (CBT) & graded exercise therapy (GET) in the CFS NICE guidelines.

    “there was a lack of high quality evidence to inform treatment of CFS...“ Dr Rawle, Medical Research Council, to Professor Malcolm Hooper, 6th Jan 2011.

    The psychiatrists conducting the trial assumed that all symptoms were caused by fear based avoidance of exercise and deconditioning. They have produced 3 publications based on the same anecdotal reports using different bizarre definitions of recovery & unfounded assumptions each time. The PACE trial facts are clear. CBT does not produce any objectively measurable improvement in disability. GET does not produce any clinically important or practically significant improvement in the time taken to walk 6 mins. As the PACE data disproved their assumptions I call for an immediate suspension of the NICE guidelines for CFS & an immediate scientific review of all biological evidence.

    https://submissions.epetitions.direct.gov.uk/petitions/45302
  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    I doubt this will succeed, the number of signatures required is too high iirc. but thats not the point, Its an important message to send.
  3. golden

    golden Senior Member

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    signed!!! :)

    i think this will succeed and gain mass momentum swiftly.

    that this even exists has cheered me right up :)
  4. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    can those from other countries sign?
  5. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    I don't think so, as it asks whether you are a UK resident, but you could try, and let us know!
  6. Merry

    Merry Senior Member

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    Was not able to sign because I am not a UK citizen.
  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Oh well - thanks for trying, and for letting us know.
    Merry likes this.
  8. maryb

    maryb iherb code TAK122

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    Anyone signing HM gov e- petitions have to be UK resident. I'm a mine of useless information:)
    Have signed it and sent the link on to 30 people, now if everyone did that hmmmmm
    Alex you're probably right its a big ask but hey we can give it a go.
  9. maryb

    maryb iherb code TAK122

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    Doesn't look like its caught on:( only 522 signatures so far. Am I the only one to think the more in their face we are, not in a bad way, the more we are on their minds?
    Okay maybe it won't get the necessary number required and not the best wording in the world - sory Victoria, but its better than doing nothing - or do people think otherwise, be good to know.
  10. golden

    golden Senior Member

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    could UK people ask all the M.E. groups to ask their members to look at the petition to see if they want to sign it?

    i am suprised that my local M.E. group has decided not to pass on this petition to its members.
  11. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    You have to be a UK citizen to vote I think, its a citizen's initiative kind of thing. Every time something like this comes up we get thousands of signatures but even after a year we fall short and get timed out. Yet it sends a message: we are watching and we will keep trying.

    What I am not sure about is whether or not it is open to UK residents too.
  12. snowathlete

    snowathlete

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    UK
    It's worth signing because it's a record of the wrong.

    Unfortunately these petitions don't make it to the 100,000 very often, the ones that do tend to be ones supported by the national press. Hardly power to the people is it.
    If you think about it, 100,000 requires about 1 in 600 in the population to vote (assuming I can still do math, which I assure you, I cannot...) - practically impossible.

    In the US which has 5 times that population of the UK, you need only 25,000 (last time I checked) and it used to only require 5,000 or 10,000 I think? So over in the US you need only 1 in 12,500 people to vote. Feel free to pick me up on this if I am wrong btw...

    20 times easier in the US than it is in the UK to make a petition successfull. The UK is just pretending to be democratic.
    taniaaust1 and maryb like this.

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