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Calling all in the UK. Please complete this survey on the efficacy of GET/CBT on ME

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, May 14, 2012.

  1. Countrygirl

    Countrygirl Senior Member

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    Hello to all in the UK,

    The MEA has sent me this e-mail this morning as they are hoping to test the claim by NICE that GET/CBT is the best form of treatment for ME. [​IMG]

    Please, please do participate in the survey and explain the effects that GET/CBT or earlier versions of that approach............eg as in my day [​IMG] I was told to exercise my way out of the symptoms (put me in a nursing home and a permanent severe relapse).....................affected your level of functioning.

    Please follow the links and all will be revealed.................I hope.


    This is our opportunity to send a message to the Government and the cabal of psychiatrists who have hijacked our illness.



    This email is being sent to all UK ME national charities and support groups.



    We have today launched a major survey on CBT, graded exercise and pacing. Please see www.meassociation.org.uk Latest News.



    This is an important survey, particularly in view of the proposed 2013 review to the NICE guidelines and we are hoping that you will feel able to help with it by bringing it to the notice of your members.



    Our chairman’s letter, in our quarterly magazine, ME Essential, out this week, says “I am always keen to work with other ME/CFS organisations where there is an opportunity to benefit everyone with ME/CFS. With a bigger voice we are more likely to be listened to and heard”.



    It is an anonymous survey - the email addresses only go to providers of the survey programme and are not recorded by them.



    Please could you ask your members, if they have any queries, to send them to me on barbara@fernside.plus.com. Queries sent to the office will be forwarded to me and a direct email will save a busy office some work.



    There will be a slight delay with the printed form but the survey will be open for at least 3 months.



    Regards



    Ba Stafford


    Vice Chairman ME Association
  2. Enid

    Enid Senior Member

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    I wish I could help - all here ran a mile when offered CBT (8 years ago and the only option demanding acceptance of depression) - I escaped a psychiatrist in A&E foisted on me by three junior Docs "all in your mind". Added to that one GP gave me a ticket to a gym for exercise. All barking up the wrong tree and we knew it.
  3. Artstu

    Artstu Senior Member

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    Blimey it is certainly a long survey.
  4. ukxmrv

    ukxmrv Senior Member

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    Does it work now? When I tried it yesterday it went around in circles.
  5. Countrygirl

    Countrygirl Senior Member

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    Enid, I quoted your comment to the MEA trustee who is says please will you fill in the form and repeat what you have said here as that is valuable information. She says please would everyone read the survey before they decide that it isn't something relevant to them. You may still be able to contribute something of importance that can be used when they present their findings.

    Thanks,

    C.G.
  6. Enid

    Enid Senior Member

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    Will do CG though I never attended personally and heard from members in our local group forced to attend (that or nothing or lose support).
  7. Countrygirl

    Countrygirl Senior Member

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    I haven't attended any course either. They didn't exist 30 years ago, but I still could complete the survey as accurately as is possible.

    It isn't easy and some of the questions are confusing at first. I was puzzled to be asked whether I was receiving Attendance Allowance each time. I thought it was an error, but later they do refer to DLA. I think it requied a few people to perform a dummy run before it was lauched as some of the questions are very difficult to answer or are misleading.

    It is much harder to create a questionnaire than one might think, especially when there are so many variables to factor in. I think we can answer it adequately though.................just!

    C.G.
  8. Enid

    Enid Senior Member

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    I'll give it a go as best I can CG on-line (I was retired at the time - pension/disability only due to very obvious but reactive osteorthritis according to my Neurologist). Will think through carefully on the way.
  9. clive powney

    clive powney Senior Member

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    Just tried this survey out and it got so repetative that I gave up. If the ME association wants to use this as a tool to use then it needs to be revisited and simplified
    meandthecat likes this.
  10. peggy-sue

    peggy-sue

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    DLA and Attendance Allowance are the same things. It's just DLA if you're below retirement age, AA if over.

    In Scotland, the "options" of CBT and GET are not available. NICE guidelines do not apply in Scotland.
    There is one specialist ME nurse, in Fife. I don't think he manages to cover the entire nation.
  11. Enid

    Enid Senior Member

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    Just done the survey - it's very quick and I think the format changed yesterday - CBT/GET really only. Perhaps the original was too complex. I would encourage all who are able.
  12. Sasha

    Sasha Fine, thank you

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    Just done this - it took about 45 mins because I had to do all the questions, having had all three of CBT, GET and pacing but it's worth it - we need to get the truth out about these treatments so if you haven't done the survey yet, UK people, please do it soon!
  13. Firestormm

    Firestormm Senior Member

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    Not sure now when this ends - but it will save your place to let you return to it I understand :)

    Mine was quicker as GET for ME never been offered. Although I did comment as to why i.e. that's it's always been felt I am doing as well as I can whenever the subject of referral has arisen.

    CBT was relevant and of course the rest. Hopefully this will help make a difference to even the way in which these practices are 'sold' and, well, practised :)
  14. meandthecat

    meandthecat

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    Me to
  15. Sasha

    Sasha Fine, thank you

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    I certainly agree it's not the world's best-designed survey but they've already had over 1,000 responses so I doubt they would change it now.

    It's a personal choice but I think it's better to struggle through an imperfect and time-consuming survey than to let our experience not be heard. In an imperfect world with limited resources, I think the MEA are doing their best to help us, and that we should support the survey if we possibly can.
    Firestormm and Enid like this.
  16. Purple

    Purple Bundle of purpliness

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    I remember seeing someone on the ME Association Facebook page saying that it's important that people fill in this survey as NICE is usually interested in patient experiences (perhaps even more so than in patient associations submissions?) so this survey is a tool to collect these experiences. You can also fill in the survey even if you haven't formally done any of the three management approaches (GET, CBT, pacing) but instead tried to apply the principles yourself.
    Firestormm and Sasha like this.

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