May 12, 2017 Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard ...
Discuss the article on the Forums.

UK: Short, simple letter to your MP to ask them to attend the Carol Monaghan PACE debate on 20 Feb

Discussion in 'Action Alerts and Advocacy' started by Sasha, Feb 16, 2018.

  1. Sasha

    Sasha Fine, thank you

    Messages:
    12,812
    Likes:
    34,305
    UK
    Scottish MP Carol Monaghan has secured a debate on PACE at Westminster next week. It's very important that as many MPs attend as possible. This is a big deal - a major step in the battle against PACE.

    So, UK folks, I've drafted a short, simple message here that you can just cut and paste into an email. You can personalise it if you want but all you really need to do is put your MP’s name at the start and yours at the end.

    You can find your own MP’s contact details here.


    Subject line: Westminster Hall debate, Tues 20 Feb, 11-11.30am – PACE trial and its effect on people with ME

    Dear ****,

    I’m one of your constituents and suffer from ME (myalgic encephalomyelitis). I’m writing to ask if you would please attend this debate, which is very important to me.

    It concerns the £5 million, taxpayer-funded PACE trial of exercise and talking therapy for patients with chronic fatigue syndrome (which the NHS considers synonymous with ME). The trial’s claims that these therapies are effective have now been widely discredited due to the trial’s poor methodology and surveys indicate that exercise in particular can be very harmful for patients with this disease.

    The researchers’ insurance-industry conflicts of interest were not disclosed to patients in the PACE trial before the study began. The study’s original analyses to gauge improvement and recovery were abandoned and replaced partway through the trial; £250,000 was spent in vain on legal fees to stop the underlying data being released for independent scrutiny. Over 100 leading scientists and patients’ organisations worldwide have called for the researchers to retract their inappropriate claims that patients recovered due to the trial therapies, but the researchers have not complied.

    The trial is now being used in several universities as a teaching example of poor science and has attracted critical coverage from international media, such as the New York Times. And yet I and 250,000 patients in the UK and more worldwide are affected every day by the influence of the claims made in the PACE trial.

    I would be deeply grateful if you would attend the debate on Tuesday.

    Yours sincerely,


    *********​

    More details about what she's doing in relation to PACE on her FB page and Twitter:

    - https://www.facebook.com/CarolMonaghanSNP/

    - https://twitter.com/CMonaghanSNP

    You can send her comments on how PACE has affected you to carol.monaghan.mp@parliament.uk
     
  2. Sasha

    Sasha Fine, thank you

    Messages:
    12,812
    Likes:
    34,305
    UK
    Bump. :)

    Let's get as many MPs to this debate as we can. Please write to yours now, if you haven't already.
     
    andyguitar and Janice Hargreaves like this.
  3. Janice Hargreaves

    Janice Hargreaves

    Messages:
    72
    Likes:
    229
    UK
    Yes. I too have asked my MP to go. I'm optimistic because when I let him know about the Unrest screening he replied that if he couldn't make it then he would send a representative. So I think that is quite helpful.
     
    Sasha and andyguitar like this.
  4. Janice Hargreaves

    Janice Hargreaves

    Messages:
    72
    Likes:
    229
    UK
    Plus last week I sent my experiences to Carol Monaghan.
    She got 100 responses in first 3 days. Brilliant! The more the merrier I feel.
     
    Binkie4, Sasha and andyguitar like this.
  5. andyguitar

    andyguitar Senior Member

    Messages:
    622
    Likes:
    927
    South east England
    Sasha likes this.
  6. FTY

    FTY

    Messages:
    75
    Likes:
    164
    I've already written to mine, fingers crossed it'll work. I think I'll phone the constituency office next week to follow up. It's great what Carol Monaghan is doing, her radio interview was really good.
     
    Janice Hargreaves likes this.
  7. Sasha

    Sasha Fine, thank you

    Messages:
    12,812
    Likes:
    34,305
    UK
    Bump...
     

See more popular forum discussions.

Share This Page