The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

@NICEgetinvolved has asked for patient concerns to be logged

Discussion in 'General ME/CFS Discussion' started by Keela Too, Aug 17, 2017.

  1. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
    NICE seem to be inviting comment from ME patients on the process of the review of CG53. You can check out the whole thread on twitter, but it ends like this:


    Tweet with email address


    And the tweet at the top of the string of tweets concerned:
     
  2. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
    Okay.. I'm starting to use a new hashtag if anyone wants to join me #ReviewCG53now
    LOL.
     
  3. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    they do realise there are 15,000 signatures on a petition o_O
    have they read any of the comments?

    eta: and an FOI from David Tuller, not to mention letters from CS?
     
  4. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
    I think this tweet was an invitation to log our problems with "the process". I'm going to send an email tomorrow. Just because they asked for one. :) But yes I agree they SHOULD KNOW!
     
  5. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
    Perhaps a few others should also send emails. Frustrating that they will no doubt head for a round file, but perhaps they go to some-one else outside the circle that usually deal with ME?
     
  6. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
    Okay over on twitter now:
     
  7. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
    And again
     
  8. Molly98

    Molly98 Senior Member

    Messages:
    501
    Likes:
    4,290
    If people do send emails, please take a photo of email and also tweet it to the twitter thread above if you have twitter. Sometimes this email us your concern can be a way of trying to show the public you care, while stopping our concerns and complaints from being put out there in the public arena where media and public can view them. We need this to stay public. We are probably only getting a response because it is in the public sphere.

    Keep it as public as possible.

    @Keela Too you are doing a brilliant job :thumbsup::thumbsup::thumbsup:
     
  9. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
  10. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    Countrygirl, Jan, Skycloud and 3 others like this.
  11. dangermouse

    dangermouse Senior Member

    Messages:
    406
    Likes:
    2,258
  12. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
    I wrote to NICE this morning.

    Feeling bit emotionally wiped (why does sticking up for us all do this to me.. ) so I will share my letter in a bit. Perhaps see what sort of response I get.
     
  13. Molly98

    Molly98 Senior Member

    Messages:
    501
    Likes:
    4,290
    Thanks Sally, I will also write one over the weekend and post to twitter
     
    trishrhymes, Jan, Keela Too and 3 others like this.
  14. dangermouse

    dangermouse Senior Member

    Messages:
    406
    Likes:
    2,258
    Well done and thank you for using precious energy for all of us. I hope you're able to rest now. :hug:
     
  15. Sbag

    Sbag

    Messages:
    73
    Likes:
    346
    well done Sally. I have ben writing to them over the last couple of weeks trying to get info from them which isnt on the website. I noticed that they didnt make a distinction as to the aetiology of ME but said some of the guigeline group thought neurological as per WHO but others thought not. Text stopped there so managed to get a statement from them saying that they do not make any comment on the cause of ME and doing this is outside of their remit which is to give guidelines on treatments etc.
    They have also not published any minutes from old meetings but they are getting thise sorted and will put them on the site. Might not be any use but may provide info on how previous discussions went and what majority were in favour of WHO support.
     
  16. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
    I put this on the MEA thread too:

    "I'll put up the response soon, but it may interest folk to know that my MP asked a question or two on my behalf, and apparently there were no PACE Trial authors amongst the "topic experts" consulted for CG53. "
     
    Sbag and Valentijn like this.
  17. slysaint

    slysaint Senior Member

    Messages:
    2,124
    Likes:
    11,463
    as per my post here: http://forums.phoenixrising.me/index.php?posts/888191/

    any chance your MP could find out?
     
    Ellie_Finesse and Keela Too like this.
  18. Keela Too

    Keela Too Sally Burch

    Messages:
    900
    Likes:
    3,985
    N.Ireland
    @slysaint My head is currently spinning from all that has happened in the last few days (inc the sharing of the interview I did for NVTV) so give me a moment to think, but this might be a possiblity. Although I'm wondering does it have to go through an MP, perhaps just ask at that email address above and see what response comes back?
     
    slysaint likes this.

See more popular forum discussions.

Share This Page