Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,738
    Likes:
    19,311
    UK
  2. Jan

    Jan Senior Member

    Messages:
    398
    Likes:
    2,702
    Devon UK
    If NICE are beginning to view ME as a 'suspected neurological condition' can't the MEA and others appeal against the use of the 'experts' being consulted by NICE for the guidelines? I imagine all the so called experts are psych based, plus EC. I know we are waiting for FOI request to reveal who they are, but can an appeal not be made?

    Can we also not appeal against them on the grounds that (I suspect) none of their 'experts' have an interest in the physical nature of ME nor study any biological data. These 'experts' are self proclaimed experts and the majority of patients do not recognzie them as such. Nobody yet knows for sure what ME is, so how do they class these people as the 'experts'?

    I am a bit wooly headed so apologies if not very clear.
     
    MEMum, Valentijn, Keela Too and 8 others like this.
  3. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,716
    UK
    Presumably the conventional route by which medical professionals are deemed to become experts in their field, is by a combination of accredited education, proven track record experience, and maybe also credible independently validated research. Being as it is now blindingly obvious conventional ME "expertise" comprises none of these, the whole notion of what qualifies someone to be an ME "expert" should be formally re-assessed. Self-proclamation isn't really the most reassuring route.
     
  4. Binkie4

    Binkie4 Senior Member

    Messages:
    594
    Likes:
    2,683
    14487 at 1.15 on 22nd.

    I have become confused about when votes will stop being counted.

    Told a friend that they would count up until midnight.........but perhaps it was 5pm.

    Or perhaps it's ongoing.....
     
  5. arewenearlythereyet

    arewenearlythereyet Senior Member

    Messages:
    1,478
    Likes:
    7,586
    I think being an ME expert is as easy as being a nutritionalist nowadays. You used to have to have a biology and food science degree and then have specialist experience to be a nutritionalist...now you see people labelling themselves such just because they've paid £200 for some online course and "eat healthily". I guess ME expertise is the same. Disreputable people will always gravitate to the complicated ...it helps weave their web of confusion and deceit.
     
    Luther Blissett, Jan, MEMum and 3 others like this.
  6. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,738
    Likes:
    19,311
    UK
  7. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,212
    The MEA petition will remain open till Monday:

    https://www.change.org/p/petition-t...tter_responsive&utm_term=recruit_notification

    It would be really great if we could hit 15,000 signatures by Monday morning

    As far as I can see from a quick google search, this is the largest ever patient petition that has ever been presented to NICE - so it cannot just be ignored

    I can then forward this news to Sir Andrew Dillon, Chief Executive at NICE!

    CS
     
  8. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,738
    Likes:
    19,311
    UK
    That is great, so let's try to break the 15 000 barrier!

    HOWEVER, the heading of the thread will now deter people from voting and we need to change the date.

    @Kina @Sushi

    Please could you change the title of the thread and state that the closing date is now Monday.

    Thank you!!
     
    Luther Blissett, MeSci, MEMum and 2 others like this.
  9. MEMum

    MEMum Senior Member

    Messages:
    435
    Likes:
    2,229
    Or @ Mark could do it, if the others aren't awake yet?
     
  10. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,738
    Likes:
    19,311
    UK
    As the mods are no doubt kicking up their heels somewhere :cool: or recovering from a wild night out, I have started a new thread to ensure folk know we can add more signatures,

    14 625 so far.
     
  11. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,553
    Germany
    Thread title changed.
     
  12. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,738
    Likes:
    19,311
    UK
    This new thread is very relevant. Perhaps someone could use it for comment on the petition???


    http://forums.phoenixrising.me/inde...-workwell-review-on-getset.52938/#post-878036


    Todd Davenport of the University of the Pacific and consultant with Workwell Foundation, has published a review of the GETSET study. Slams them for bad science.
    http://www.workwellfoundation.org/wp-content/uploads/2017/07/GETSET-Trial-in-MECFS-L1.pdf

    "All the things that made me uneasy as a physical therapist about the PACE trial are back, now in the form of a study involving a slick self-help guide. It’s the same confirmation bias of telling folks to move in the context of a graded exercise program, and then having them parrot back the study hypothesis on standardized questionnaires. It’s the same absence of objective activity measures that result in the same self-fulfilling prophecy of telling people to move more, and then declaring victory when some of them are actually able to do it. It’s the same disregard for foundational scientific evidence of aerobic system compromise, immune activation, and other forms of organic pathophysiology in favor of a behavioral approach to ‘tell the tired people to move more.’"
     
  13. daisybell

    daisybell Senior Member

    Messages:
    1,603
    Likes:
    7,384
    New Zealand
    It's so nearly there- still rising and it looks like it will break the 15,000 number before Monday!
     
  14. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,738
    Likes:
    19,311
    UK
    14 742

    S.L.O.W.L.Y heading towards 15 000.

    Can we do it? :nervous:
     
  15. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,738
    Likes:
    19,311
    UK
  16. daisybell

    daisybell Senior Member

    Messages:
    1,603
    Likes:
    7,384
    New Zealand
    14801 - the suspense is killing me...!
     
  17. Barry53

    Barry53 Senior Member

    Messages:
    2,277
    Likes:
    13,716
    UK
    If we do make it, it will be a very close call :nervous:. Creeping up ... just wish it would creep a bit quicker.
     
  18. charles shepherd

    charles shepherd Senior Member

    Messages:
    2,239
    Likes:
    16,212
  19. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,738
    Likes:
    19,311
    UK
  20. Countrygirl

    Countrygirl Senior Member

    Messages:
    3,738
    Likes:
    19,311
    UK
    Breaking into a sweat here....................:sluggish::ill:
     

See more popular forum discussions.

Share This Page