August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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URGENT MESSAGE FOR UK ME PEOPLE

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Sep 25, 2017.

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  1. Countrygirl

    Countrygirl Senior Member

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    I have just received a phone call from a friend to say tomorrow's Radio 4's You and Yours programme wants people with ME to phone in to tell them about the success they have experienced with NHS treatments for ME. I understand it is following the decision to revise the NICE guidelines so they are hoping to hear from people who have experienced CBT/GET.

    http://www.bbc.co.uk/programmes/b095ptl7

    I know of no other details at the moment.

    Edited to say that the recording of today's programme where we can hear what was actually stated will be available any time now.
     
    Last edited: Sep 25, 2017
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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  3. andyguitar

    andyguitar Senior Member

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    Hmm lets hope the BBC dont try to select callers who offer only praise for the NHS. In my opinion the NHS and various Gov departments decided many years ago that the symptoms are in the mind. As a result they have simply left hundreds of thousands of very ill people to rot. There should be a public enquiry into the systematic and habitual abuse of sufferers by the NHS, local and district councils, the DWP and some sections of the media.
     
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  4. Invisible Woman

    Invisible Woman Senior Member

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    Oh, oh.......chronic fatigue (sigh).

    We really need to hear from people with ME and not "fatigue".
     
    Mrs Sowester, Jan, slysaint and 4 others like this.
  5. Countrygirl

    Countrygirl Senior Member

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    CBT is a scam, says a psychologist. If would be great if a psychologist would speak up tomorrow on Radio 4.

    (Does anyone possess a tame one who is aware that PACE promotes nonsense? :D

    We do have a clinical psychologist here with ME, who leads one of our groups, although she works, so will probably not be available to ring in.)


    This article from the Daily Mail is from 2014.


    http://www.dailymail.co.uk/health/a...-term-solution-says-leading-psychologist.html

    It is an article which reports the views of a psychologist on the the effectiveness of CBT for mental health conditions..

    He says:



    One of the comments by another psychologist says:

     
  6. slysaint

    slysaint Senior Member

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    Yes; they messed this up on another phone-in.

    Also they should also be aware that a lot of the NHS treatment is based at fatigue clinics and therefore not necessarily only treating people with M.E. So they are likely to get responses from these people.

    I hope CS will put them straight on this.
     
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  7. Jenny

    Jenny Senior Member

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    I was a psychologist before I had to take early retirement because of worsening ME. I'm going to email them - any comments before I send this:

    Having suffered from ME for 35 years, I am delighted that NICE are going to review their guidelines on this condition.These guidelines wrongly state that Cognitive Behaviour Therapy and Graded Exercise Therapy are effective treatments.

    Before I had to retire from my career as a psychologist due to my worsening health, I used Cognitive Behaviour Therapy as a treatment for psychological disorders and trained others in its use. It can be helpful for mild depression and for 'fatigue' arising from other conditions but it is useless in the treatment of ME.

    Graded Exercise Therapy is worse than useless. Many ME patients have been permanently damaged by being forced to exercise.

    It is imperative that the NICE guidelines are changed so that the NHS stops wasting money on ineffective and dangerous treatments and acknowledges the severe, often life-long disability that this illness causes.
     
  8. NelliePledge

    NelliePledge plodder

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    Good luck Jenny I hope you get on that would be great
     
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  9. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Invisible Woman, Jenny and MeSci like this.
  10. Mark

    Mark Former CEO

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