Having observed these gatherings for years, it appears the FDA/CDC/NIH/HHS ignore what the CFSAC have to say.
As a concept, it's a nice gesture to allow a few patients to complain for 2.5 minutes to a 'Federal Official', more than the British allow or indeed any other country to my knowledge.
Cynically you could say this is what 'they' want you to think. 'They' want you to feel grateful for the opportunity to voice your opinion at CFSAC meetings, when in essence no meaningful change ever happens from them occurring.
Certainly neglected CFS patients with practically zero medical help, might become overly enthusiastic about meetings such as the CFSAC,yet if one looks at actual outcomes from these meetings, the outcome is generally null. Oddly, we all look forward to them, perhaps like believing if one climbs a mountain, you become closer to the moon.
This whole thread is old -- it's for the December meeting which is past -- but I did want to address your comments.
It's not about CFS patients and their family being "overly enthusiastic" or "looking foward" to meetings; in fact, a lot of people who write in for years are very aware of the landscape, the poor progress, the broken system, etc. They're not naive but they persist. Do you think Rome was built in a day? Many successful endeavors take years of hard work, frustration, resilience, etc.
I'll tell you why I've submitted something almost every meeting for the last 8 years:
1) Sometimes ideas do get taken up. People wrote/ spoke multiple times about the need for homebound patients to be included in studies. Starting last year, the CDC has started to include such subjects in their studies. So the progress is slow but it's not absent. Another example -- here in the US, the disability benefits legal ruling for ME/CFS now mentions and includes symptoms from the ME-ICC and CCC. Patients, advocates, researchers, and clinicians have talked about these criteria for years.
2) Whether I like it or not, things that come out from the CFSAC meetings do affect policy, research direction, etc. and thus me. Each federal agency reports on activities that they're up to. I like to keep abreast of what is going on: if promises are broken, agencies contradict themselves, or do something stupid, I can point it out.
If you don't educate yourself about the players, the policy, what goes on, how do you expect to formulate a legitimate or coherent complaint? I find that officials are very skilled at deflecting concerns but if you can point specifically to federal laws, past statements, inconsistencies, you have a better shot at rectifying the situation. Learn to play the game.
3) Documentation for the present and for the future. CFSAC is obligated to publish all public testimony and make it available to the public (including media) on request. I refer to CFSAC public testimony when I talk to gov't officials; because it is on an gov't website, they are more likely to take it seriously than say this forum or a personal blog (like it or not). Also, gov't can't denied that patients don't agree with their approach and that patients haven't spoken up when given the opportunity; it's there on their site. Finally, if anyone ever decides to investigate this whole fiasco or file a legal suit, the history is there for the taking.
4) I believe that if you don't do something about a situation when you get a chance, you lose your right to complain in good faith when things don't turn out the way you want. During the 2004 US election, I did not vote. Later when I complained about the results, my friends/ relatives teased me that if I didn't vote, I didn't have a right to complain. They were right.
5) Read history. It's only in hindsight of a movement that we recognize the significant turning points. Suppose Malala Yousafazi had decided not to write a UN blog about education of young women when her father asked her as a young child? The movement to educate young women in internationally would not have been ignited in the same way. Suppose Rosa Parks decide she was just one middle-age Black woman so why raise a fuss by refusing to sit in the back of the bus? I don't want us to miss a chance at possible turning points. In life, most people regret the things they did NOT do, not the things they did.
