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Calling the UK: Please help to influence the NICE Guidelines

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Jun 10, 2012.

  1. Countrygirl

    Countrygirl Senior Member

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    Just to remind people in the UK that we do need to add to the numbers completing the MEA's survey as it is our chance to influence the NICE guidelines for doctors.

    Even if you are just using PACING without official guidance, you qualify to answer the form. Please do participate if you can. It is also possible to complete it in stages if you cannot manage to answer all the questions in one attempt.

    Thanks, Folks.

    C.G.




    http://www.meassociation.org.uk/?p=11204” target =



    ME Association launches major survey on CBT, graded exercise and pacing

    by Tony Britton on May 14, 2012
    Please note that people taking part in this survey can take a break at any time, save what they’ve done and return to complete the form later. There are plenty of opportunities throughout the form to express one’s own views. It is not just a ‘tick box’ exercise – there are plenty of open questions for people to tell us anything they want to tell us about their courses or self management of any of the therapies.

    The ME Association is launching a major new survey today to ascertain people’s feelings about Cognitive Behaviour Therapy, Graded Exercise and Pacing. It is for people with ME/CFS or Post Viral Fatigue Syndrome who have actually tried any of these approaches whether by attending a course or self-managing their symptoms.
    The survey will run through the rest of the Spring and during the Summer and can be completed online by clicking on the link that appears below. The questionnaire can be filled up in bits for people who are too ill to tackle the whole thing at once – saving what you’ve done for your next visit.
    Plenty of advance notice will be given about when we intend to close the survey and the results will be published towards the end of the year.
    If possible, please take part online. It will make the process of analysing the results so much easier.
    Previous surveys have found that while – for some – these therapies improved their symptoms, significant proportions found they either had no effect on them whatsoever and in many cases actually made people feel worse.
    WHY DO THE SURVEY NOW?

    We expect the results will influence the next review of the NICE Guideline on ME/CFS treatments, which is due to be announced next year. We’ll include the results in our submission to the review which may lead NICE (the National Institute for Health and Clinical Excellence) to come up with new guidance to doctors. You may remember that the first NICE guidelines on ME/CFS, issued in 2007, were a huge disappointment to many in the ME UK population because Pacing was not a recommended therapy and no therapies were recommended for severe sufferers. GPs have to follow NICE guidelines in giving advice to their patients and so you can see why your help in influencing a review is vital.
    And the evidence we gather from people who have tried out these therapies may be helpful to medical researchers when they apply for funding for new studies into these approaches. As yet there has been no substantive research carried out into Pacing.
    WHO CAN TAKE PART?
    Anyone who has – or has had – ME/CFS or PVFS AND and have taken part in a course of CBT, GET or Pacing, either attending in person or going online. If you only completed part of a course, we would still welcome your views.
    OR you must have self-managed your symptoms using one or more of these therapies
    OR have been refused a course.
    HOW CAN I TAKE PART?

    Either go online now by clicking on the link below, and saving the form when you’ve had enough. You can always return to the form by clicking on the link which is showing in our “Quick Links’ box. It will take you straight to where you left off and, at any point, you can look back at or alter your earlier answers if you wish.
    Or you can request that the form be sent to you by email for downloading to your screen for printing off yourself. Email Gill in our office and she will send you a copy. Please make sure you post the form back to Gill by the middle of August.
    If you don’t have an email address, for have difficulty reading on screen, ask for a paper copy to be posted to you by writing to Gill Briody, Ramsay Research Fund, ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF, or phoning 01280 818964. PLEASE ALLOW TWO OR THREE WEEKS FOR THE FORMS TO BE SENT TO YOU. Again, we ask for the forms to be returned by the middle of August. But please take part online if at all possible – it will save us expense and probably be easier for most of you.
    To read more about the background to the survey, click HERE
  2. Enid

    Enid Senior Member

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    I think I've done it Countrygirl - we all know PACE is absolute crap.
  3. Countrygirl

    Countrygirl Senior Member

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    Thanks, Enid.

    I do second your eloquent evaluation of the NICE Guidelines.:D
  4. jace

    jace Off the fence

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    I just read this Anyone who has – or has had – ME/CFS or PVFS AND and have taken part in a course of CBT, GET or Pacing, either attending in person or going online. If you only completed part of a course, we would still welcome your views.
    and went away - I didn't see the other options. Now, I must do it. Yawn. No, come on jace, off you go...
  5. Countrygirl

    Countrygirl Senior Member

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    Thanks Jace.

    This reminds me of advice I was given as a child sitting exams: If you don't know the answer to the question, write about what you do know and make it fit the question. I think this advice applies to the survey.:angel:
  6. jace

    jace Off the fence

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    I've shared on a couple of other forums, FF and Spartacus.
  7. WillowJ

    WillowJ Senior Member

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    bumping this

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