1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Fable known as The PACE Trial
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the 'poisoned apple' that was the PACE Trial...
Discuss the article on the Forums.

Experts Reflect on the FDA Stakeholder Meeting

Discussion in 'Phoenix Rising Articles' started by Mark, May 19, 2013.

  1. Nielk

    Nielk

    Messages:
    5,104
    Likes:
    4,680
    Queens, NY

    I think that there is a lot of powerful impact by hearing individual stories as opposed to hard statistics. When one hears for example about a tragedy like the Oklahoma tornado of yesterday, it is heartbreaking but, when one sees a picture of a woman carrying a child out of the debris, one cannot help but cry.
    Simon, jimells and snowathlete like this.
  2. Dolphin

    Dolphin Senior Member

    Messages:
    6,519
    Likes:
    4,901
    Thanks Joel (and contributors), that was interesting.

    I think Mary Dimmock highlighted well the problems we have:



    I think a basic understanding of the pathophysiology of the illness will be important. And the lack of it may slow things down much longer than I'd like. It won't be long till I'll have been housebound two decades and progress has been quite slow in that period.

    I think the ME/CFS community needs to focus on raising money for research. I have seen a lot of people spend a lot of money on very speculative therapies of all sorts over the years. That is their prerogative but it does show to me that quite a lot of money could be raised if people invested even a small quantity (e.g. 1%) on what they spend on therapies, on research. Fundraising also doesn't need to cost people money and even these days people can raise money by voting in competitions.

    There are large numbers of people affected around the world but the amounts being raised privately remain relatively small. The MEandYou campaign is perhaps a good example of what is possible with enough effort.

    Valentijn and Purple like this.

See more popular forum discussions.

Share This Page