Discussion in 'Fibromyalgia Main Forum' started by hensue, Aug 18, 2006.
Instead of the president lets go to people who will help us!
I really think that is a good idea
This would be a good idea if the money they might contribute went directly to independent research, not our CDC and/or NIH, who seem to be incompetent.
Their "branding" of the name CFS in all the national magazines right now is going to harm more than hurt, even though they say it is a biologic disease and 4 million in US have it, and it can be seriously debilitating.
Their press conference in June left reporters all over the country writing articles about patients "not being able to cope with stressors", AGAIN giving the erroneous impression that we just need to pull ourselves up by our bootstraps and cope better.
I do believe they have realized their mistake, by they have not cancelled their $4M dollar campaign that will serve to keep the word "fatigue" in the name for years MORE to come.
The Gates donate to non-profit organizations, and there is only one doing the research that will find a CAUSE, not just more symptoms: the National CFIDS Foundation in Needham, MA.
This is an all volunteer organization that has only one purpose: find the cause of CFIDS. No money goes to CEOs, employees, etc. There stated mission is to go out of business, not perpetuate the misinformation and misrepresentation of this disease.
Their newsletter, The Forum, reads like a mystery novel since the first one back in 1997. They are now investigating the para-influenza 5 virus also found by a noted viral researcher named Robbins.
ncf-net.org also shows the truth of this disease by having a Memorial List of people who have died because of CFIDS. Go read it, folks. My name will be there someday.
Maybe the Gates could find us a national representative that would let people know the facts about the 5,000 papers published in peer reviewed journals that show the seriousness of this disease.
Money donated to organizations that do the same old thing the CDC has done for almost 20 years will be money wasted.
Ok, jumping off my bandwagon now...
There's always hope!
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