Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Just got email from my MP over ME

Discussion in 'Advocacy Projects' started by tinacarroll27, Jul 18, 2018.

  1. tinacarroll27

    tinacarroll27 Senior Member

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    I just got an email from my MP after I sent her a letter about the discussion in parliament about ME. I am not sure she actually went but at least she replied back to me and she does seem to recognise the issues with the PACE TRIAL. It is good that we are getting more MPs aware of the situation with ME in the UK. Here is her response.

    Dear Christina,

    Thank you for contacting me about treatment and support for people living with Myalgic Encephalomyelitis (ME).

    I sympathise profoundly with anyone affected by ME. It is a highly complex condition and I believe it is vital that patients receive the best treatment and care that takes account of their particular needs. Despite so many people being affected by ME, it is little understood in the medical world, leaving patients feeling dismissed, neglected and stigmatised further by their condition. I believe that local and national Government, as well as public services, need to take this into account and improve our knowledge and treatment of the condition.

    ME currently receives far less research funding than other neurological conditions of similar prevalence and it is therefore unsurprising that it is so little understood in the medical world. I am aware that the charity, Invest in ME, recently opened a centre of excellence at Norwich Research Park with the objective of maintaining high-quality biomedical research into ME and raising awareness of the effects of the condition on patients and families.

    The National Institute for Health and Care Excellence (NICE) is responsible for establishing guidelines on diagnosis and management of ME. It sets out timeline markers for making an early and accurate diagnosis for children and adults. However, standard medical tests often find nothing wrong, which initially leads many doctors to dismiss ME as psychological. Patients with ME feel that they have been let down time and time again as research, such as the PACE Trial, have been found to be seriously flawed.

    NICE has recognised concerns that existing guidance is outdated and that patients are not receiving the full picture on recommended treatments, such as studies that have shown inefficacy of cognitive behavioural therapy (CBT) or harms of graded exercise therapy (GET). In September 2017, NICE confirmed that it is planning a full update to its guidelines, including a review into the PACE trial and any implications for its current recommendations.

    I will follow NICE's review closely and bear in mind the points you have raised. In the meantime, I believe the Government should consider funding research into ME to better our understanding of the condition, improve perceptions of ME and expand routes to diagnosis, care and treatment.

    Yours sincerely,
    [​IMG]

    Rachel Reeves
    Member of Parliament for Leeds West
     
  2. Judee

    Judee Senior Member

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    Wisconsin
    That's encouraging.

    I spent the other night reading about DSM-5 and the writers' refusal to correct the definition of Somatic Symptom Disorder and got discouraged so thank you for posting this.
     
    CreativeB likes this.
  3. Alexi

    Alexi Senior Member

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    Have you seen the MAIMES campaign on Dr Sarah Myhills website ? Is your MP signed up to it ?
     
  4. tinacarroll27

    tinacarroll27 Senior Member

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    I am not sure if my MP is signed up. I think I will contact her and see if I can get her to sign up. After this email from her I am hoping she might sign up to it.
     
  5. Wolfcub

    Wolfcub Senior Member

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    @tinacarroll27 That was a very positive response from Rachel Reeves. She really spent some thought and time on her reply. It makes me wonder if she knows someone with CFS/ME?

    I now wish Norwich wasn't so far away from me.
    With the length of time it takes on NHS to get even one test done (for elimination purposes) it would be such a great thing if there was a "one-stop-shop" kind of, for anyone who thinks, or whose doctor thinks they have ME. It would be nice if more hospitals were set up for ME patients to provide them with this as best as possible.
    The way the NHS goes, it could take literally years to be referred to numerous independant specialists for testing.
     
    CreativeB and tinacarroll27 like this.

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