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

[usedtobeperkytina]

another challenge, many of us have lost a lot of our earning potential. CFS has an economic impact on the patients as well.

Tina

 

[Dolphin]

another challenge, many of us have lost a lot of our earning potential. CFS has an economic impact on the patients as well.

Tina

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.

This is the time to be philanthropic in this disease. This is your moment. This is the time your dollar makes the biggest possible difference. Hear me say that never has there been a more critical time to invest your philanthropic dollar in this disease. We wouldn’t want to you to take away from some other diseases but do it anyway. Jump Ship. Come on over because we really need this money right now to do this incredibly important work.

And we are doing the other important work that it takes to get grants through the more traditional avenues but that will take time. And time that you guys are out of. You are ready for this to happen. I know you are. Everyone is begging me for the next step and we don’t have it because we need to do the science.

 

[usedtobeperkytina]

Interesting points.

Tina

 

[muffin]

I was a litigator before I became ill. I can't think of what cause of action (in the legal sense) could be brought against CDC and/or Reeves. If you punch me in the face, I can sue you for damages. If police officers beat me, I can sue the police department and city for violation of my civil rights. Causes of action against the federal government are very limited, for obvious policy reasons - every citizen in this country has something they would love to sue the federal government for. So while there is no doubt that PWCs have been harmed by CDC's inaction, indecision, etc., I really don't know if there is a LEGAL reason that could form the basis of a lawsuit.

To further complicate the matter is the extraordinary cost of litigation. Yes, some cases are taken up pro bono - for example, a former classmate of mine was involved in the Dover school board lawsuit over teaching intelligent design in public schools. But that is very rare because of the unbelievable costs and no guarantee of ever recovering attorney's fees.

====================================
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.