Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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UK NICE guideline consultation open 10 July 2017 until Friday, 21 July 2017.

Discussion in 'Action Alerts and Advocacy' started by Jo Best, Jun 22, 2017.

  1. Cheshire

    Cheshire Senior Member

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  2. Barry53

    Barry53 Senior Member

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    An MP with b*lls, unlike my MP.
     
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  3. suseq

    suseq

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    Great letter; brilliant advocacy. Well done to all involved.
     
  4. Cheshire

    Cheshire Senior Member

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  5. AndyPR

    AndyPR Senior Member

    Note that the two positive responses have come from Labour MPs, those of us stuck with Conservative MPs will most probably be wasting their time trying to get any action from them, though if someone does know of a Conservative MP who didn't just brush it off then it would be interesting to hear about how that came about.
     
  6. Binkie4

    Binkie4 Senior Member

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    My MP Libdem, signed the recent MEAssociation petition, has talked to me at length by phone, is sympathetic, and we are meeting after the summer to discuss further.

    @AndyPR - we had a Conservative MP until the recent election. We did involve him and he wrote letters. Achieved by my husband writing very carefully worded letters and being very persistent. It took hours and hours. I honestly wouldn't have had the energy myself. They were letters not tweets. I do feel that modern modes of communication like email and tweet may not be as successful until a relationship has been made.

    I do agree with those who believe we have to get MPs working for us but it is hard work.
     
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  7. Barry53

    Barry53 Senior Member

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    Mine is Conservative, and he's pathetic so far as ME is concerned. Not so much sloping shoulders but none at all, backbone a bit doubtful too.
     
  8. Binkie4

    Binkie4 Senior Member

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    Just to add that I don't think pro forma letters work.

    Letters need to be individually written and personally focused. It's really hard work.
     
    ukxmrv, trishrhymes, Sean and 7 others like this.
  9. Barry53

    Barry53 Senior Member

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    I agree with that. When I wrote to my MP it was not a pro-forma letter (I don't believe in them because I know my own response when I get one). I received back a ludicrously ill-informed, out of date, 'arris-covering, generic, detail-depleted, party-line, pro-forma letter, that instantly lost any potential respect I may have had for him as an MP.
     
  10. SamanthaJ

    SamanthaJ Senior Member

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    She's Shadow Work and Pensions, so this is quite encouraging.
     
    ukxmrv, dangermouse, Jan and 11 others like this.
  11. NelliePledge

    NelliePledge plodder

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    That's good SJ.


    The MPs people in their offices will identify anything that is part of a campaign and as such it might not get any individual attention. Obvs the good thing about a campaign is if people write in in numbers so they see the weight of support. So if you don't get a lot writing in better to make it individual. Although people with ME are helped by having standard paragraphs to use to save energy. There should be personal stuff in the letter as well if possible so they have to respond personally rather than with a pro forma. I would say that anyone who is able to get out and wants to make MP aware should try going to the MPs surgery and putting the case in person. This is what seemed good from the campaign Dr Myhill set up before the election was called. Although thé materials they provided weren't a patch on ME Action's for the NICE campaign. Also I would say local groups inviting MP to a meeting would be good. Inviting MPs to screenings of Unrest seems highly likely to be a good way forward on educating and influencing them that's why it's really good that unrest are now crowdsourcing so they can promote it with professional support. If they could manage to get screenings on at the party conferences that would be totally amazing. Far from a fan of my MP to be honest but I'm seriously trying to persuade myself to go to see her in the autumn. I've only just got involved in my local group but thinking that might be a good angle to get her interest.
     
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  12. Barry53

    Barry53 Senior Member

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    And if there were some copies of the JHP special issue on hand might be good. Or at least some flyers with quick info and web address. Striking while the iron is hot.
     
  13. slysaint

    slysaint Senior Member

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    Just found out that Trudie Chalder did a study on the Lightning Process in 2012:

    "Experiences of young people who have undergone the Lightning Process to treat chronic fatigue syndrome/myalgic encephalomyelitis – a qualitative study
     
    MeSci, Countrygirl, Jo Best and 2 others like this.
  14. Jo Best

    Jo Best Senior Member

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    Looks like that was discussed on PR here: http://forums.phoenixrising.me/inde...ing-process-to-treat-cfs-me-reme-et-al.21244/
     
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