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ME Association: ‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP

Discussion in 'General ME/CFS News' started by Eagles, May 9, 2018.

  1. Eagles

    Eagles Established Member (Voting Rights)

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  2. Andy

    Andy Senior Member (Voting Rights)

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  3. Barry

    Barry Senior Member (Voting Rights)

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    Cannot tell from the link - what is the deadline for getting signatures?
     
  4. MeSci

    MeSci Senior Member (Voting Rights)

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    I have sent the following to my MP:

    "Dear Mr Mann,

    I must trouble you again and ask you to sign EDM 1247 which reads:

    "That this House recognises Myalgic Encephalomyelitis (ME) Awareness Week from 6 to 12 May 2018, which aims to aims to highlight the impact this invisible illness has on 250,000 people across the UK; recognises the fantastic work campaigners and charities are doing to highlight ME as a physical condition which is not all in the mind; acknowledges the detrimental effect of the PACE trials and its results, and the work which is being done to reverse this; and encourages people to go blue for ME across the week, to further bring this illness out of the shadows and into the spotlight.”

    I have passed another year with this illness, being almost unable to visit my doctor at present due to poor cognition. That's 23 years. I am now retired, although I probably missed out on the last six months of earning a pittance from selling plants due to worsening. The worsening most of us suffer might be avoided if we could get better support, as the illness is made worse by exertion. Perhaps some of us could even recover with better help and support. Instead we have to battle on, with the inevitable ill effects that this has.

    I have a Masters degree in science! I should have made something of my life.

    I know that the guidance for medical professionals is being reviewed. But some of us cannot wait quietly for the two years that this will take.

    Some of us die, either by our own hands: https://www.s4me.info/threads/in-memory-of-bob.2861/

    or from the illness: https://community.scope.org.uk/discussion/44058/losing-my-young-adult-daughter-to-m-e

    This cannot continue.

    Thank you.
     
    kafkaboots, Joh, Cheshire and 26 others like this.
  5. Andy

    Andy Senior Member (Voting Rights)

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    Good job @MeSci :thumbup:

    On a side note, I've emailed Carol about the duplicated text in the EDM, "which aims to aims to highlight".
     
    Joh, MEMarge, Allele and 9 others like this.
  6. Andy

    Andy Senior Member (Voting Rights)

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    Now changed on the Parliament website, I posted on the MEA Facebook post about this as well, for them to amend their website if they want.

    Now 22 MPs signed.
    Screen Shot 2018-05-09 at 16.10.52.png

    If you see your MP there, please send them a message to thank them.
     
    Joh, MEMarge, Allele and 9 others like this.
  7. Trish

    Trish Moderator Staff Member

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    A good letter, MeSci.

    The In memory subforum is in the members only area, so this will not be available to your MP unless they join the forum.
     
    Joh, Allele, janice and 8 others like this.
  8. MeSci

    MeSci Senior Member (Voting Rights)

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  9. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I have written to my MP asking him to sign (with link) and to contact Carol Monaghan to express his interest in this issue.

    Also said that a priority this year will be to get NICE to withdraw CBT and GET now. He signed the petition for that but there may well be additional work this summer.
    Also said that lots was happening in the ME world ( Unrest, David Tuller, Millions Missing etc) and that I hoped to speak with him soon.


    Just to add that apart from MPs who have an interest getting together, I am not aware of any particular actions being organised by Carol M. I know she attended Forward ME. I don't know if anything came out of that that we need to be working on.
     
    Last edited: May 9, 2018
  10. MeSci

    MeSci Senior Member (Voting Rights)

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    I've just emailed my MP for the third time, including a link to the EDM! (The same numbers are used again and again so I thought it would make it clearer and easier to find.)
     
  11. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    i do feel we should be taking Carol's work forward in some way. Does anyone know if anything is planned?

    Sorry- just have to go to bed.
     
  12. Andy

    Andy Senior Member (Voting Rights)

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    Now 28 signatures. Screenshot below shows the newer signatures which duplicates a couple from my screenshot up-thread.
    Screen shot 2018-05-10 at 08.02.49.png
     
    Joh, Hutan, Invisible Woman and 7 others like this.
  13. Barry

    Barry Senior Member (Voting Rights)

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    Emailed my MP yesterday evening, but he's not signed so far. Fingers crossed.
     
    Joh, janice, MeSci and 6 others like this.
  14. Andy

    Andy Senior Member (Voting Rights)

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    38 signatures, new ones below.
    Screen Shot 2018-05-11 at 11.06.37.png
     
    Hutan, MEMarge, Indigophoton and 7 others like this.
  15. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Unfortunately my MP is one of those who doesn’t sign EDMs “on principle” because she doesn’t understand the point of them. I will still use the EDM to write to her though in the next week asking for the meeting her assistant said I could have in the autumn but I haven’t been able to take them up on. She’s a very opinionated person who gets on the telly a lot I’ve heard on the grapevine that she is dismissive of ME so I will need to be well prepared.
     
    Joh, Binkie4, MEMarge and 10 others like this.
  16. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Does anyone know if the minutes of the Forward ME meeting that Carol Monaghan attended have been posted?
     
  17. Andy

    Andy Senior Member (Voting Rights)

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    Invisible Woman and Barry like this.
  18. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    Sent to my MP, I’m not holding my breath though
     
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  19. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thanks @Andy.

    Just glanced over them but couldn't see anything recorded re a discussion involving Carol and where/how her campaign is going. Is she going to continue being involved in /with Forward ME? There has been a meeting since then on 1st May, but no minutes yet registered.
     
  20. Barry

    Barry Senior Member (Voting Rights)

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    Maybe the principle in question is really that they don't like publicly committing themselves.
     
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