Monday, September 7, 2009

Charity Comparisons

Jerry Lewis is on TV, talking about the many things the MD Association provides to patients with muscular dystrophy: treatment, wheelchairs, financial assistance, volunteers to provide hands-on help to patients.
 
And then there's the CFS Association (www.CFIDS.org) which does lobbying and fundraising for research, but provides none of those tangible things that can make life easier for someone who's sick/disabled and therefore poor.
 
I cannot tell you how many times I have asked for help and been told, rather snottily, to go to the association for my disease rather than asking some unaffiliated person or charity to assist me.  They usually have some glowing story about how some relative got all the help they needed from the charity for their disease, and therefore, the same help should be available to me.  When I say it is not, I am called a liar -- either that I'm lying about the availability of help through CFIDS.org, or that I'm lying about having been diagnosed (i.e., that CFIDS.org won't help me because I don't actually have a CFS diagnosis).  No one can fathom that the association for my disease doesn't provide all the same benefits as other disease charities.
 
Well, for one reason, because CFS gets $1 per patient per year from the government for medical research -- versus hundreds of dollars per patient for other diseases.  Since Day One, the bulk of medical research into CFS has been privately funded.  Our Association devotes all its energies to raising money for that research and lobbying the government for more government funds for research; they can't spare the time/money to organize a volunteer corps, or to purchase wheelchairs, etc.  We patients are pretty much on our own.
 
Churches are pretty good at providing help for the short term (i.e., a couple weeks after surgery), but not for years on end for chronic debilitating illnesses.  And if you aren't a member of a church, either because you're not a believer or you're physically not well enough to attend, forget it; you won't get any help from any church.
 
Because I've fought so hard to stay on my own two feet, I "don't look sick" (and, in fact, some of "Jerry's Kids", if you see them seated, don't look sick, either).  Because I won't give in to a wheelchair, preferring to exhaust myself walking, I'm assumed to be healthy enough to do everything that needs doing.  I actually get more help from people when I invoke "my bad back acting up today" than when I tell them I have a chronic illness that makes life difficult every day.

That's the reality of life with CFS.
 
If you don't believe me, please feel free to contact CFIDS.org and ask them what direct-to-patient services they provide.  They'll say No to everything that Jerry Lewis has just listed off that MDA provides to their patients.
 
It's easy for people to say they don't want to pay more taxes, that the needs of the disabled should be met by charity, but the simple fact is, people don't give enough to CFIDS.org to allow them to do that for us.  I suspect, just like federal research money, cancer charities get hundreds of times more money per patient than CFS charities, even though our need for assistance is just as great.




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