- I would also like to know, though, the CAA's impressions of what they said. I would find it surprising if the approach these two reps described hasn't already been attempted over the past 20+ years, by the CAA, and also by other patient organizations. Has our (ME) collective approach been so different?
Or is it the government or drug manufacturer or researcher response in our case that has been different?
- I also thought I heard one of them say that they had several million in their own coffers to support things like clinical trials -- how did they raise that kind of money? Is some of it government funding? Is the reason we are unable to raise that kind of money only due to the false (and continually perpetuated) impression that ME is not serious?
Yes, I am wondering too how much we have tried these approaches, and the CAA would be good to loop into the discussion. I think that we have some unique hurdles with ME/CFS that these other illnesses do not have. We don't die directly from it (at least not fast enough for the medical community to draw a correlation), we have a huge public relations problem - we don't appear sick, stupid name, etc.
But I do think we as a patient community are missing out on huge opportunities to learn what we can from these successful advocacy campaigns. I also think that we could learn from MS advocacy - what worked before MRI's could show MS, how did they drive the ball forward? They dealt with the same disbelief that we are facing.
We also need to truly partner with these government agencies wherever and whenever we can. I think when we only vent our frustration on them, it causes further divide. It might make patients feel good for the moment but it's ineffective in moving ahead.