1. Patients launch $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!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

the "new and improved" CAA (CFIDS Association of America)

Discussion in 'General ME/CFS News' started by shrewsbury, Jan 7, 2010.

  1. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,395
    Likes:
    220
    Clay, Alabama
    another challenge, many of us have lost a lot of our earning potential. CFS has an economic impact on the patients as well.

    Tina
     
  2. Dolphin

    Dolphin Senior Member

    Messages:
    6,870
    Likes:
    6,155
    I don't know anything about your situation so this is a general comment: loss of earning potential does not equal broke in a lot of cases.
    This can sometimes be seen by the amount of money spent on trying to treat the illness.
    Unfortunately, many feel efforts to try to treat the illness through research progress don't apply to them (i.e. they don't give).

    Another problem is those that are able to work full-time often don't feel as annoyed/concerned about the illness so don't give.
    We've also found that if people improve and get back to work they don't generally give.

    The people who give are generally people who are currently reasonably badly affected (moderately or severely) by the illness and/or members of their families. (Fund-raising events of course can bring in money from all sorts of sources).

    [Background: we have written in the region of 5,000 letters with sample newsletters to former enquirers and members over the years asking whether they would like to join or if not would be be interested in giving a donation; in more recent years, we specifically pointed out that donations could be for research. Apart from the people who joined, I think the number who have donated is up to 3, all parents and the money wasn't large. We are an all-volunteer organisation so donors can't really claim we'd waste the money. Countries like the UK and the US use different currencies and certainly up to a few years ago, there was no evidence these people were donating to groups there (e.g. ME Research UK had got no online donations from Ireland or Europe before Jeremy Bearman's matching appeal). Most people who have or had the illness were/are simply not giving to the cause. Despite the fact that in Ireland and England anyway, a large percentage of the population (90%?) give some sort of charitable giving in a year]

    Nancy Klimas talks about the importance of giving in section 8 at:
    http://aboutmecfs.org/Rsrch/XMRVKlimasII.aspx
    e.g.
     
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,395
    Likes:
    220
    Clay, Alabama
    Interesting points.

    Tina
     
  4. muffin

    muffin Senior Member

    Messages:
    940
    Likes:
    5
    USA!
    ====================================
    Thank you for explaining all of this. Both my mother and brother are lawyers and my brother is in Atlanta but can also bring cases in Wasington DC (dito for my mother). But my brother is insanely busy and feels he could NOT take something like this on since he doesn't have the background or the time - time is the big one. I guess I knew the answer by the very fact that it had NOT been done in previous years and there had to be a reason for that. Thanks again.
     

See more popular forum discussions.

Share This Page