The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Early Day Motion (271) on the NICE guideline tabled by Stephen Timms MP:

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Sep 9, 2017.

  1. Jo Best

    Jo Best Senior Member

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    From that Telegraph article (http://www.telegraph.co.uk/science/...ory-disease-blood-test-could-easily-diagnose/):

    "Generally leptin is already more abundant in women, and scientists believe its presence in the study could help she light on why women are more affected. Three out of every four patients are women."

    Another reason why more women than men get this disease may be if autoimmunity is involved, so MPs may be interested to know that this is under investigation at a world-renowned UK research facility - Norwich Research Park (University of East Anglia, with co-sponsors Quadram Institute and Invest in ME Research) as part of a translational biomedical research programme which focuses on the role of infection the immune system.

    The latest study is now registered on WHO (http://apps.who.int/trialsearch/Trial2.aspx?TrialID=NCT03254823) NIH (https://clinicaltrials.gov/show/NCT03254823) and NHS (http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/clinical-trial.aspx) clinical trials sites.

    Public title: Autoimmunity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    Scientific title: Defining Autoimmune Aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    It's quite interesting, in the context of the EDM (271) to see the current first page of clinical trials on the NHS site, as it stands out against the other trials listed as recruiting participants, e.g. FITNET-NHS, MAGENTA: http://www.nhs.uk/Conditions/Chronic-fatigue-syndrome/Pages/clinical-trial.aspx


    NHS clinical trials.jpg
     
  2. jstash

    jstash

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    FYI - friends who work in U.K. politics tell me that a letter is far more likely to be read properly and responded to than an email - simply because they receive so many of the latter including spam / inappropriate messages that it makes it difficult to filter the good ones.

    Edit: so I'm not saying don't email - obviously do. But those of you with the resources to send a letter as well should definitely look into doing so.
     
    Last edited: Sep 11, 2017
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  3. NelliePledge

    NelliePledge plodder

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    Believe me they will be getting inappropriate letters through the post as well. As long as you follow the MEAction advice and your email clearly shows your name and address to demonstrate that you are a constituent they will treat it the same as a letter. I agree it is best to personalise it as much as possible to avoid it being put in a campaign pile and given the stock thank you for your letter which has been noted. In my case I mentioned a showing of Unrest that's expected to happen locally and invited the MP to join me in attending if unable to go to the parliamentary showing. Hoping that way I will actually get more of a personalised reply. And if I'm up to it I may go back and ask to see them at their Constituency Surgery.
     
  4. NelliePledge

    NelliePledge plodder

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    a rose among the thorns thank you IIME
     
  5. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I think the best tactic for this is personalising the first paragraph with your own ME experience. Then when your MP (or their assistant) opens it it doesn't immediately look like another email.

    But with this campaign we just need them to sign the EDM and engage with the topic, so if they open the first email and then take action doesn't matter so much if they recognise further emails as being part of the same effort (the aim isn't for us to get personalised replies).
     
  6. NelliePledge

    NelliePledge plodder

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  7. slysaint

    slysaint Senior Member

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    I'm surprised that the MP who recently asked all those questions isn't on the list, nor Kelvin Hopkins(?)
    Do these things get circulated in the HoC or is it dependent on constituents contacting their MPs?

    @Jonathan Edwards ........didn't realise you were Plaid Cymru in your 'spare time':D

    eta: I see Caroline Lucas is on the list..........wonder if Colin Barton is aware?
     
    Last edited: Sep 13, 2017
  8. John Mac

    John Mac Senior Member

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    Now up to 14

    http://www.parliament.uk/edm/2017-19/271
     
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  9. jstash

    jstash

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    Hi all - I see that the list of MPs is up to 14.

    I thought I'd give a little insight into EDMs and what sort of numbers are required for them to be given attention.

    50+ MPs is basically a level at where it might be useful to show a level of interest when taking on further
    100+ MPs is the sort of numbers that are required for it having a chance of being debated in Parliament. If you've had the capacity to look at any other EDMs, you'll see that there are *loads* that hover between the 20 - 50 mark.
     
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  10. NelliePledge

    NelliePledge plodder

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    Beat me to it on both points @slysaint that made my day about Caroline Lucas guessing CB will be choking on his tea when he reads that. :thumbsup:

    As I understand it the MPs do mention/promote stuff like this to each other in informal discussions
     
  11. Jo Best

    Jo Best Senior Member

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    That's why I think EDM 778 is a fine example of patients and families taking the initiative - Jan Laverick (@sproggle) and her mam Margaret Laverick - with a proactive response by their MP and others supporting by asking their MPs to sign and MPs signing, just as is happening now, so it shows this can be achieved.
     
  12. SamanthaJ

    SamanthaJ Senior Member

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    Apologies if someone's already mentioned this and I missed it, but my MP's just confirmed something that I had a hazy recollection of - that ministers and shadow ministers can't sign EDMs. He said he welcomed the EDM and looked forward to a debate though.
     
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  13. NelliePledge

    NelliePledge plodder

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    my MP, through her parliamentary assistant, has said that she doesnt sign EDMs because "they have very little legislative impact". I have gone back and pointed out that this EDM isnt anything to do with requesting changes to legislation it is about MPs supporting people with ME in getting change in the way ME is dealt with administratively. maybe administratively not exactly the right word although I was thinking more about NICE than about the medical profession. anyway too late to change wording now.

    to be fair I wasnt expecting a lot and as she was at one point a junior minister in health she may think she knows something about ME already.

    She said she may be able to go to the lunchtime Unrest event so I asked the PA to get back to me to let me know after 24 October whether or not she's able to make it as there are other ways of making the film available to her.......
    I also asked about how to book in to go to see her as getting the brush off over something as easy to do as the EDM has fired me up somewhat.
     
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  14. Jo Best

    Jo Best Senior Member

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    From: http://www.parliament.uk/about/how/business/edms/
     
  15. SamanthaJ

    SamanthaJ Senior Member

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    Thanks, @Jo Best.

    This is my MP's wording
    and I vaguely remember having had this response before on a different issue years ago so it could be Labour rules, but other front-benchers may respond differently, so it's worth asking them to sign.
     
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  16. Jo Best

    Jo Best Senior Member

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    Ah right thanks @SamanthaJ
    It's good that he's given a positive response and I guess the next question (if you felt up to it) may be what info does he need to be adequately informed of the issues if there is a debate (as some members of the House of Lords were briefed by the pro-PACE trial protagonists/BPS lobby for this debate in 2013 - https://hansard.parliament.uk/Lords...hronicFatigueSyndromeMyalgicEncephalomyelitis -
    so this time it would be good if people could really educate their MPs about the issue) and maybe you could also ask if there is anything else he could do to support your cause in the meantime so the ball's back in his court?
     
    Last edited: Sep 13, 2017
  17. Binkie4

    Binkie4 Senior Member

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    Apologies if this has been answered but do we have all details of the Parliamentary showing of 'Unrest'?

    My MP has signed and indicated a possible interest in the viewing.

    Please can we have date, time, room number. Need to keep the impetus going.
     
  18. Joh

    Joh Inactivist

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    The link might have more info (sorry if not, haven't read everything since I'm not from UK)
     
  19. John Mac

    John Mac Senior Member

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    Liverpool UK
  20. Jo Best

    Jo Best Senior Member

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    Definitely, and also worth asking any supportive friends or relatives to ask their MP if theirs hasn't signed yet.
     

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