Not donating to the cause is the norm, not the exception, for people with ME/CFS
To us all, those who can right now :victory: and those who can't now but will later :sofa: and especially to those who probably won't be able for quite a while :In bed:
One frustration I have is that many people never do anything.
I know this from Ireland.
Apologies I have said this in a few places and forget where.
Over the last 13 years, I have sent a sample newsletter to in the region of 5000 former enquirers and former members of the group I help run (which is all-volunteer) asking if they would like to join or if not, would they consider donating to the group or specifically to research.
Approx 400 have joined and many/most of them will have gone on and helped the cause in some way e.g. donating, fundraising, awareness-raising, reply to some negative media coverage, volunteering within the group.
Of the others, only three donated, all mothers. Quite a few of these people (hundreds) got two letters.
And for most of this time, there were no other ME groups looking for money from them in Ireland and donating to other countries was difficulty (and talking to say ME Research UK, they weren't getting any random donations from outside the UK). (I accept in the last few years there might have been the odd donation abroad).
Looking at what is raised in other countries, I have seen little evidence that it is any different in other countries.
So I can well accept that there are people not in a position to donate.
But there is a definite trend, most people don't donate.
And also it seems, one can't depend on people to donate when they might improve and get back to work and their finances have improved as was undoubtedly the case with some of these people. (The majority of these were written to 4-12 months after they first contacted the group but we also went back on old records and then at one stage didn't write to people for years so many (1000+) got letters 2-10 years after they first contacted, when we know some of these will have gone back to work etc).
So the conclusion I came to is that money needs to be raised from the people who are currently struggling either through they or their families donating and/or they and/or their families trying to fundraise.
I also feel asking people to give 1% of what they spend on treatments is not unreasonable. It adjusts for the different disposable expenditure people have and also for the importance the illness has in their lives. I give my reasoning at:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0411D&L=CO-CURE&P=R3124 "How much should one give to ME/CFS research? - what about a target of 1% of what one spends on trying to get better?"
I think the Pocket Money Fund page has some interesting points on the issue:
http://www.pocketmoneyfund.org/