New era for ME/CFS research as top cytokine study attracts media headlines
The immune systems of patients who have recently developed ME/CFS look markedly different from those who have been ill for much longer, according to a major new study from Drs. Ian Lipkin and Mady Hornig at Columbia University. This shift in immune function hadn’t been seen before.
Discuss the article on the Forums.

Twelve Days of Xmas Email to Collins

Discussion in 'Action Alerts and Advocacy' started by OverTheHills, Dec 15, 2010.

  1. OverTheHills

    OverTheHills

    Messages:
    390
    Likes:
    574
    New Zealand
    Many of you will remember the successful Time for Action/ What have you done for me lately? Campaign.

    Well frankly I don't think Mr Collins has delivered a lot to patients in the last year ... lots of talk, lots of intentions but in terms of actual, patient-affecting change, not so much. A name change for our disease. Wow.

    So I thought: he's going to be having a lively, fun, family Xmas with lots of singing and food and maybe a glass of wine. We're going to be having our sort of Xmas. Quite different. So I thought it was time to spoil his a little bit by prodding his conscience.

    Not being American I don't really understand what is in the remit of the NIH and what's not. And I have no talent for rhyme at all. SO what is our partridge in a pear tree? What is do-able and will really make a difference to patients inside a year, next year? Can we make it into doggrel (George?)?

    Things like

    - Completely reworked NIH website
    - Doctor education
    - Transparency with patients
    - FIVE TREATMENT CENTRES (or whatever they're called that the CFSAC have asked for).

    Now it may be too late for the Xmas email to get going, but I thought I'd see what you all think about what we can and should remind him about. So silly or sane, what do you think?

    OTH
     
  2. SOC

    SOC Senior Member

    Messages:
    6,664
    Likes:
    11,532
    USA
    I was thinking about the Christmas thing, too. With 2/3 of this family PWCs, our "holiday plans" don't include shopping, visiting, food, or even gifts. I've noticed us using words like "quiet", "calm", and "rest" when people ask us about our plans. It would be an education for some of these policy folks to see how we get to celebrate the holidays.

    I like the FIVE TREATMENT CENTERS. I'm already singing that in my head.:D

    Do we have to be realistic? My partridge in a pear tree would be "a cure for this damn-ed disease".
     
  3. citybug

    citybug Senior Member

    Messages:
    522
    Likes:
    36
    NY
    I think it is Sebelius and Koh that are responsible for the treatment end and centers.
     

See more popular forum discussions.

Share This Page