Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
Discuss the article on the Forums.

M.E. Christmas wish list.

Discussion in 'Action Alerts and Advocacy' started by drjohn, Nov 29, 2011.

  1. drjohn

    drjohn Senior Member

    Messages:
    169
    Likes:
    24
    PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

    On your M.E. sufferers' Christmas wish list, apart from, "A cure for M.E. please", what would you ask for?

    (As with puppies, your wish doesn't have to be just for Christmas but for ever)

    Your wishes can be challenging, demanding, expensive, cheap, touching, emotional, practical, humorous, even a little fanciful.

    Let us see what we can come up with and how many of them we can really make come true.

    Ho, ho, ho!
    John
    drjohngreensmith@mecommunitytrust.org
    M.E. Community Trust.org
     
  2. fla

    fla Senior Member

    Messages:
    234
    Likes:
    45
    Montreal, Canada
    A diagnostic test that's cheap and simple. I wished for a diagnostic test last year and got the spinal fluid protein thing (not cheap, not simple). Since it's a wish, I'll also ask that it produces a number that also indicates the severity of the case of M.E. being measured. :D
     
    *GG* likes this.
  3. Sushi

    Sushi Senior Member Albuquerque

    Messages:
    14,335
    Likes:
    21,483
    Albuquerque
    A group living (supportive) community for those who would benefit from like-minded company and sharing in daily living tasks. Unfortunately it would probably only work if the members had a reasonable ability for self-care.

    And, located it a place cheap enough for patients to afford!

    Sushi
     
    Lou, *GG* and justinreilly like this.
  4. allyb

    allyb Senior Member

    If only

    I wish that Simon Wessely et al would have a visit from Christmas past like scrooge and see all the suffering that has been caused to all those with ME; by their selfish wicked ways. And they would mend those wicked ways forever. Ahhh if only. :Sign Please:
     
    justinreilly and ixchelkali like this.
  5. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    274
    Long Beach, CA
    I wish that ME/CFS was afforded the respect and compassion due a serious, disabling disease. If that were true, I think many of the other things I'd wish (e.g., research funding, treatments, social support) would follow. At the very least it would make it easier to live with.
     
  6. drjohn

    drjohn Senior Member

    Messages:
    169
    Likes:
    24
    I'll try to report back with a good round-up of the wishes: most frequent, quirkiest etc. I think this is the best so far -- who wouldn't want this?
     
  7. drjohn

    drjohn Senior Member

    Messages:
    169
    Likes:
    24
    A few have been alomg this path, Allyb and would be inclined to say that you are far too lenient !
     
  8. drjohn

    drjohn Senior Member

    Messages:
    169
    Likes:
    24
    Probably - and quite unsurprisingly, I think - the most common, ixchelkli. It's just gotta change, hasn't it?
     
  9. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,437
    South Australia
    Research funding that is actually proportional to the ratio between societal disease burden and the research funding levels of almost every other disease. (Currently CFS receives 20-40 times less government funding than would be predicted based on a regression model for all other diseases - two separate models based on either USA or Australian data.)
     
    allyb likes this.
  10. allyb

    allyb Senior Member


    Why thank you drjohn, lenient I can live with :angel:because that shows that despite all the suffering and injustice bestowed on me and my fellow ME comrades, I am still not the vindictive murderous psychiatrically challenged looser that SW revels in portraying to the media, (for his own gain) blighting progress.:(
    No, I am educated enough to see that if it wasnt so, if my Christmas wish was granted; then all of the other Christmas wishes on this thread would probably come true!!

    Apart from Wonko's which I've just read and it's BRILLIANT.

    (heres hoping)
    allyb
     
  11. Wonko

    Wonko Senior Member

    Messages:
    1,439
    Likes:
    4,742
    The other side.
    A warranty repair/replacement, a voucher to reclaim my lost 25 years (to include consequential loss) and of course a written letter of apology from the manufacturer.
     
  12. Lou

    Lou Senior Member

    Messages:
    582
    Likes:
    432
    southeast US
    Waking up in Tahoe 27 years ago to the craziet nightmare ever --bizzaro world in which normal people(me, too) become, and will become horribly sick, and nobody(doctors, gov't, sometimes family) quite believes you-- and completely awake now thinking, 'man, glad that was only a dream'.
     
    anne_likes_red and justinreilly like this.
  13. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    858
    UK
    Someone who can put all the science together and finally tell us about ME. Preferably before all the years of ill health.
     
    justinreilly likes this.
  14. Nielk

    Nielk

    Messages:
    6,877
    Likes:
    10,613
    Since this is a wish - I would go all out and say - a complete cure that is easy to take like just one pill taken once with no side effect and poof the thing is gone and we all feel totally healthy and in addition, it even makes us stronger than the average person. Our IQs go up through the roof because that's how the effect of this pill works on our brains and it only effects us this way. Others, who take it don't get this effect at all. We all become respected scientists and doctors and come up with stunning results of finding cures for all kind of afflictions. We mysteriously become very attractive and desirable. People flock to us because we are so "special". We continue to live out our lives with loving people around us and a feeling of complete satisfaction and meaningfulness.
     

See more popular forum discussions.

Share This Page