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Call to Action: Westminster Hall (UK) (parliamentary) debate: PACE trial and its effect on people with ME - Carol Monaghan February 20

Discussion in 'PsychoSocial ME/CFS News' started by Dolphin, Feb 7, 2018.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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    MsUnderstood, Joh, Forestvon and 39 others like this.
  2. Esther12

    Esther12 Senior Member (Voting Rights)

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    Carol Monaghan is the MP who raised PACE COIs as an issue for the parliamentary the committee looking into research.

     
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  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    I hope Carol is up for it. She came over as really nervous during the parliamentary committee exchanges.
    Time to get in touch with MPs...
     
  4. Sasha

    Sasha Senior Member (Voting Rights)

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    Do we know if it will be televised?
     
  5. Keela Too

    Keela Too Senior Member (Voting Rights)

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    I have written to MP this morning and offered to meet him in advance of this debate. I think it is likely he will attend, as he has been supportive in the past.
     
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  6. Sasha

    Sasha Senior Member (Voting Rights)

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    Should we all be writing to our MPs? Can someone do a form letter? MEA?

    I wish Charles Shepherd was on this forum!
     
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  7. Keela Too

    Keela Too Senior Member (Voting Rights)

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    This is what I wrote:

    "I am sure you are aware of this debate coming up in Westminster on 20th February. I hope you will consider attending on behalf of local ME patients.

    If a time could be arranged prior to this date, I would be grateful for the opportunity to talk with you again about ME issues, and specifically to help you understand how damaging the PACE Trial has been to ME patients world over.

    I recently attended the NICE stakeholder engagement meeting in London (16th January 2018) in preparation for the review of the CG53 guideline for ME. There is still huge concern amongst ME patients that NICE will not abandon their promotion of psychosocial therapies for ME - despite the widespread scientific criticism of the PACE Trial methodology etc.

    All support at this time is critical. Perhaps you could encourage other MPs to attend this meeting to give a voice to their ME constituents."

    Bit in italics obviously not relevant to others. And not everyone would want to meet their MP so maybe they could just ask if they could forward some information.
     
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  8. Russell Fleming

    Russell Fleming Established Member (Voting Rights)

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    Morning,

    The ME Association was contacted by Ms Monaghan's office yesterday just after the ballot was drawn. We didn't know anything about it beforehand.

    Dr Shepherd is away on business today, but is hoping to speak to her later this morning I understand. We have also this morning sent her office information relating to the Journal of Health Psychology - press release, and special PACE edition - and I am sure once Dr Shepherd has spoken to her, we'll be tasked with doing more.

    At present I haven't been asked to produce anything calling on people to invite their MPs to the debate - but I hope to learn more tomorrow.

    It rather caught us on the hop as we're trying to work on the other Westminster Hall debate that was revealed in the minutes from Forward ME (although this debate is still in the planning stages).

    Hope that helps. Sorry I don't know more.

    We hadn't been asked to make a public announcement about the PACE Trial debate, but @Dolphin discovered it, so we've now also shared it across our social media.

    P.S. For those that don't know, I work part-time for the ME Association.
     
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  9. Sbag

    Sbag Senior Member (Voting Rights)

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    Back in 1988 there was an ME sufferers bill passed in parliament. One thing it said was that each year the department of health had to produce a report to parliament on ME. I have not been able to find any of these so had written to my MP about this. It was overlooked in her response to me so I had sent her another email yesterday.
    If anyone knows if any were produced please let me know and if not maybe it would be good to add to any letters you send to MPs.
     
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  10. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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  11. Sasha

    Sasha Senior Member (Voting Rights)

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    What kind of comments? There's tons of stuff we could send her.
     
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  12. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    The debate is tabled as - The PACE trial and its impact on people with ME

     
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  13. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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  14. Seven

    Seven Established Member (Voting Rights)

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    So like would be appropriate to send all David's Tuller Articles?
     
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  15. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    I would think personal accounts of inappropriate or negligent care and advice stemming from the results of the PACE trial would be useful.
    I would think pithy soundbites will be very useful as well as detailed accounts - these will help in such a short debate.

    I wouldn't shy away from sending something even if you think you're not up to writing anything well crafted - because the number of responses always gets quoted so numbers help.
     
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  16. Sasha

    Sasha Senior Member (Voting Rights)

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    So, by the looks of her tweet, she wants comments from us about how PACE has affected us individually?
     
  17. Sasha

    Sasha Senior Member (Voting Rights)

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    Do you think it's worth amending the thread title so that people know there's an action they should be taking?
     
  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    If the debate is on the impact of PACE maybe it would be good if non-uk people could put together a brief statement to show how it has not only detrimentally impacted pwME in the UK but all over the world.

    @Joh @Inara @Aroa @ScottTriGuy @MErmaid @Cheshire (sorry I know I've missed loads of people)


    (As a side issue, could a sort of international group be set up here on S4ME with 'reps' from the different countries so that, rather than attempt to tag different people, a general 'International' tag be used to notify all countries? @Adrian @Andy )
     
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  19. Liv aka Mrs Sowester

    Liv aka Mrs Sowester Senior Member (Voting Rights)

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    Yes, I do but I'm off duty modwise so I'll tag @Dolphin or @TiredSam
    Would you consider adding 'Call to Action' or similar at the beginning of the title, please?
     
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  20. Sasha

    Sasha Senior Member (Voting Rights)

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    Sorry, I forgot you weren't the original poster. o_O
     

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