One patient, Jeremy Bearman, chastized patients for spending thousands of dollars on dubious treatments instead of giving that money to research organizations.
It's fine and understandable to spend some money on experimental treatments but it is short sighted to spend vast amounts of money on these treatments and not support research efforts. I know that this is not a politically fashionable view and in fact one of America's leading ME/CFS doctors has stopped corresponding with me because I criticised doctors who rack up thousands in expenses on a complex regimen of unproven treatments and expensive testing, which is inappropriate outside of a research setting.
I don't view my donations to ME charities as being merely charitable but as being a very important investment in my own future. If we all thought along these lines then, the state of science in the illness would be much more advanced and we would have effective treatments available today.
ME/CFS writer Cort Johnson also had a few harsh words for patients with an essay entitled "Opportunity Knocks."
Over dinner at the International Symposium on Viruses in CFS two prominent, longtime physicians lambasted the inactivity of ME/CFS patients. One went so far as to state they were basically allowing themselves to be locked into cattle cars without protesting (!) He said that at least he would try and make a run for it.
Strong words yes but with only 2-4% of diagnosed ME/CFS patients actually contributing to their national organizations they resonate. By not fully supporting these organizations chronic fatigue syndrome (ME/CFS) patients have left their fates up to a national medical agenda that has no place for them. They’ve ceded their power to government officials who have time and time again demonstrated they have no interest in ME/CFS. Whatever anyone’s justification for not supporting these organizations the result is the same - a loss of power – and an enfeeblement in an environment which is hostile to our interests.
Ouch. I have to say it made me feel a little defensive. I'm barely able to buy groceries these days with my woefully inadequate amount of food stamps. Is it really fair to ask me to give my widow's mite when the heads of these organizations are making ten times (at least) my well-below-the-poverty-level annual income? (Not that I think they shouldn't be making the salaries they are, just that my ability to give is so limited in comparison.)
But it did bring me back to a question I've asked myself many times, namely, why are we with this disease so remarkably incapable of raising the money that other diseases are? Yes, we're quite debilitated, but so are patients with, say, Alzheimer's Disease. Indeed I daresay care-giving for Alzheimer's patients is far more draining than it is for the vast majority of ME/CFS patients. Yet they have a national fund-raising event each year -- the Memory Walk -- not to mention a variety of local events to raise money. The year before I developed ME/CFS, I spent the summer temping for the local Alzheimer's Association as their "events coordinator," helping out with some of the logistics of putting on both a golf tournament for doctors that included a lecture on emerging research and the local Memory Walk. Why don't we have those sorts of events to raise money for ME/CFS?
My first thought is the name. It's difficult to get people willing to give money to those walking or golfing for a loved one with "Chronic Fatigue Syndrome," a disease that most people think they experience at some level just by living in our fast-past world. Yet one more reason the name must be changed.
I also can't help but wonder if all the effort it takes just for us to get things like disability -- a gauntlet that can last up to four years or more these days -- and other needed social services (not to mention just getting diagnosed!) reduces the amount of time and energy we, as well as family and friends, have to give to fund-raising events, not to mention the amount of money we have free to give to research organizations.
So how do we make a run for it, in Cort's words? I can't say I have an answer on a macro level. On a micro level, I'm considering a recurring monthly donation to the CFIDS Association of $5. It sounds little, but then we all know the deal about how lots of little adds up. I'm also probably going to buy my Christmas cards from ME ResearchUK. It not only helps raise money, but spreads awareness about ME/CFS as well.