Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Jul 10, 2017.

  1. Barry53

    Barry53 Senior Member

    Messages:
    1,395
    Likes:
    7,186
    UK
    I've obviously led a sheltered life ... what is this thing with spoons?! :confused::)
     
  2. AndyPR

    AndyPR I'm a DAD, I Donate, Advocate and Demonstrate

    Messages:
    2,085
    Likes:
    13,955
    Hampshire, UK
  3. Barry53

    Barry53 Senior Member

    Messages:
    1,395
    Likes:
    7,186
    UK
    MEMum, AndyPR and dangermouse like this.
  4. Countrygirl

    Countrygirl ME is not MUS

    Messages:
    2,515
    Likes:
    11,234
    UK
    We are now over 3 000 and going up!

    :balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons::thumbsup:
     
  5. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,216
    Likes:
    15,516
    Germany
  6. Barry53

    Barry53 Senior Member

    Messages:
    1,395
    Likes:
    7,186
    UK
    Was that ornery members did you say @TiredSam?
     
    Invisible Woman, Hutan and TiredSam like this.
  7. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    885
    Likes:
    2,688
    Uk
    Now I can't get Les Dawson out of my head!
     
  8. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,216
    Likes:
    15,516
    Germany
    A rare picture of TiredSam awaiting the call from the Monstrous Regiment of Women of the South West

    upload_2017-7-10_21-16-23.png
     
  9. Countrygirl

    Countrygirl ME is not MUS

    Messages:
    2,515
    Likes:
    11,234
    UK
    I am so sorry @TiredSam !:redface: Mortified! :eek:

    To express my sincere apologies, I have added one of our favourite photos of you in your little black dress. I do hope it doesn't embarrass you but you like quite.................er..................not as we expected.



    TiredSam honorary member of the Monstrous Regiment of Women - SW Branch, sporting –er- his favourite little black number


    upload_2017-7-10_20-29-46.png
     
  10. Countrygirl

    Countrygirl ME is not MUS

    Messages:
    2,515
    Likes:
    11,234
    UK
    [​IMG]


    @TiredSam ................?????????????????????


    Really????

    A mistake surely??

    So who......?

    upload_2017-7-10_20-34-22.png
     
    Invisible Woman likes this.
  11. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,216
    Likes:
    15,516
    Germany
    It's me both times, but 30 years apart. Oh the ravages of time ...
     
  12. Barry53

    Barry53 Senior Member

    Messages:
    1,395
    Likes:
    7,186
    UK
    [​IMG]

    Wow @TiredSam - what a fantastic improvement 30 years has done for you! :D
     
  13. Countrygirl

    Countrygirl ME is not MUS

    Messages:
    2,515
    Likes:
    11,234
    UK
    Below is an extract from Dr David Tuller's latest piece in a section referring to the lack of review by NICE

    http://forums.phoenixrising.me/inde...rror-the-cdc-drops-cbt-get.52748/#post-873668.........

    has anyone asked him to sign the MEA's petition??


     
  14. Countrygirl

    Countrygirl ME is not MUS

    Messages:
    2,515
    Likes:
    11,234
    UK
    Here are a few of the comments from the petition.






     
  15. Countrygirl

    Countrygirl ME is not MUS

    Messages:
    2,515
    Likes:
    11,234
    UK
    3 500 have now signed!!
     
    Solstice, Valentijn, AndyPR and 7 others like this.
  16. charles shepherd

    charles shepherd Senior Member

    Messages:
    1,982
    Likes:
    13,013
    We have also abandoned our MEA monthly website poll to ask about the NICE guideline review

    This poll gives people an opportunity to support the NICE guideline if they want to do so

    Vote via home page on MEA website: www.meassociation.org.uk

    Results so far tonight:


    • Do you think the NICE guideline for CFS/ME is working for you?
      • Yes - I think it is (0%, 0 Votes)

      • Yes - but it could be better (1%, 2 Votes)

      • No - I think it needs a minor review (2%, 4 Votes)

      • No - I think it needs a major review(95%, 177 Votes)

      • I am not sure (0%, 0 Votes)

      • What's the NICE guideline? (2%, 4 Votes)


        Total Voters: 187
     
    Solstice, alex3619, Valentijn and 4 others like this.
  17. PeeWee

    PeeWee

    Messages:
    47
    Likes:
    112
    Signed the petition - its up to 3,750
     
  18. Countrygirl

    Countrygirl ME is not MUS

    Messages:
    2,515
    Likes:
    11,234
    UK
    This morning at 6.58 we have 4 051.

    Can we make a push to get this to 5000 by late morning?

    I have started by sending out a few more emails to people with ME along with my first mug of coffee.
     
  19. Binkie4

    Binkie4 Senior Member

    Messages:
    301
    Likes:
    1,324
    Have found that my husband's ( he's my carer) contacts are gathering more votes. Ex colleagues, his current club colleagues, activities he does, are responding, one even from USA. They are even asking more about ME. One has shared that he has two brothers with ME and thinks he is developing it.

    Of course, he is out and about, very visible in the world from day to day. I have barely been seen for 10 years. It does make a difference. Sad.

    So if you are lucky enough to have a carer, ask them if they will use their contacts to spread the word.

    We need big numbers for this petition.
     
    Solstice, Valentijn, mango and 10 others like this.
  20. Ben Howell

    Ben Howell OMF Correspondent

    Messages:
    615
    Likes:
    6,856
    U.K.
    Signed+family. And trying to promote on Twatter. I mean Twitter. (I like it really, but there is only so many rogue 'Love Island' retweets one can take).

    I think its important that even our non UK friends are able to sign due to the influence NICE has on worldwide policy. Whether that will actually change anything, I'm not sure.

    B
     

See more popular forum discussions.

Share This Page