oerganix
Senior Member
- Messages
- 611
I realize that and I appreciate that you tried and had such negative aftereffects. We have the most difficult time of probably any disease advocating. Certainly it's frustrating on many levels - its frustrating to you, I'm sure is frustrating to the CFIDS Association, and its frustrating to me. It's a difficult situation.
I even wonder if maybe there aren't so many CFS patients as we think. The statistics suggest about 200,000 people have been diagnosed with CFS in the US. But here with are - I believe in the biggest CFS Forum on the internet - with about 1,500 people. I have wondered for years where is everybody? It could be that the size of the community is really much smaller than we think.
I was at one Lobby Day in Wash DC - an hour and a half away from the Big Apple - and I think there was ONE person from New York. How could only one person show up for the biggest city in the country which is right next door? I was just bowled over by that; that really stuck with me.
I've heard several leaders in the community also state that CFS has never really gotten the support from the parents. One guy was in the non-profit field before he came down with CFS and he stated that the parents of other people with diseases played a huge and vital role in advocating for them. They were healthy, they had resources and of course they had their perspective talents that they brought to support organizations. While, of course, some parents have contributed mightily in general that has not happened with CFS. Its a puzzle.
Re numbers of CFS sufferers: I think it may be that many of them are doing what I was doing; that is basically hibernating and surviving all the "benign neglect" that was sucking our energy without giving anything to hope for. I got to the point I just had to accept my life as it IS right now and not "waste" anymore money or energy on supplements that didn't work, treatments that didn't work, support groups that brought me down. Other forums were basically a place to bemoan our symptoms and commiserate and I'd had enough of that. I had to stop reading about and yearning for treatments that work for some, because they are all still EXPERIMENTAL, after all this time, (something I curse the CDC for causing or at least not preventing), and therefore not being available to the impoverished CFS sufferer.
So, I don't think there are fewer of us at all. I just think there are fewer of us willing or able to join forums and do something. I know I have greatly curtailed my activities just because I am so tired of being undependable...not knowing whether I'll be able to follow through...and feeling so bad when I can't. I can think of several reasons why people not be joining online forums....or at least I did think of them a few seconds ago...duh...
Re: parents. Yeah, that's big part of the puzzle. The psychologizing of the illness has encouraged many parents and siblings to reject, judge or just be puzzled by their CFS-suffering offspring. Mine still don't get it. It, then, tends to alienate sufferers from their families, either willingly or by default. It's one of my biggest regrets, that family and friends and spouses/lovers who SHOULD have known better, it seems to me, succumbed to the psych lobby and decided my illness was all in my head. With my history, they should have known better, but the CDC did their hoodoo and their voodoo and people I thought I could count on were won over. So, yeah, I'm really over sensitized to any promotion of 'it's all in your head' ideas. I believe it has deprived me of support I might have had if the CDC had done its job back in the 1980s and got to work on the problem, like they did with AIDS. So when I read, as I did this morning, of a conference in 2007 or 8? on the possible viral component in CFS, and there is a bio of Dr Vernon, stating that she "led the CDC research effort" on CFS for 17 years, I can only think: yah, so what?
And the parents of children with CFS have a whole extra load of worries in addition to the illness itself. Like being accused of child neglect or abuse, having the kids taken away, etc. etc.
Having said all that, coming back to the NOW, I agree that CAA has some good research going on, and I DO appreciate it. I'm just not going to take a poke in the eye, like the GET/CBT stuff or the doctor education materials, or the weird response to the failed European studies, without hitting back. Feels like self defense to me.