Cort
Phoenix Rising Founder
- Messages
- 7,392
What has the CFIDS Association done?
I know its hard (even impossible maybe) to see differences in our day to day lives but we started out from a very low point and the CFIDS Association is a small organization - the federal bureacracy is huge. We're not diabetes, remember, we're the disease with the crummy name and little funding. The little national organization operating (so I've been told) out of its sad sack suite of offices in Charlotte is advocating for a disease that most of the federal bureacracy wants nothing to do with.
Nevertheless they've had substantial accomplishments. I honestly don't know this doesn't seem to filter down to the patients more.
That's off the top of my head. They're not a big organization; they're not particularly well supported and they're doing alot with what little they have. Thats my impression.
I know its hard (even impossible maybe) to see differences in our day to day lives but we started out from a very low point and the CFIDS Association is a small organization - the federal bureacracy is huge. We're not diabetes, remember, we're the disease with the crummy name and little funding. The little national organization operating (so I've been told) out of its sad sack suite of offices in Charlotte is advocating for a disease that most of the federal bureacracy wants nothing to do with.
Nevertheless they've had substantial accomplishments. I honestly don't know this doesn't seem to filter down to the patients more.
- Got the CDC to mount its first ever multimedia campaign on a behalf of a disease. This was a multi-year effort with print, TV and radio spots that reached millions of people. In 2007 there was more than a story a day on CFS - they were almost all good. The campaign also included a Faces of CFS exhibit that millions of people saw in just one year. The CFIDS Association paid for none of this - it was all financed by the federal govt.
- Got the CDC to engage in Provider education effort that included making exhibits at numerous scientific conferences, creating a physician toolkit and a Train the Trainer program utilizing some of our top physicians and researchers.
- Created its own physician education program on Medscape that educated 35,000 physicians in its first year and potentially impacted 100's of thousands of CFS patients.
- Funded research into repeat exercise dysfuntion/metabolic dysfunction, endogenous retroviruses, brain mitochondrial problems, nitric oxide and vascular dysfunction, gastrointestinal problems, muscle receptor problems and EBV. These are some of the hottest topics in the field. The repeat exercise studies are changing the way our research field functions - they would have gone nowhere without the CAA funding.
- Created the Banbury Conference in which 35 of our top researchers met for 3 days to brainstorm about CFS
- Fought off attempts to dissolve the CFSAC (were central in creating the CFSAC)
- Documented enormous financial problems at the CDC and poor productivity, called for new leadership, for the program to be moved elsewhere and slammed the CDC for venturing into CBT and using the Empirical Definition
- Is currently developing an International CFS Research Network that will result in researchers sharing resources, samples and data and should speed up research significantly.
That's off the top of my head. They're not a big organization; they're not particularly well supported and they're doing alot with what little they have. Thats my impression.