No More Funding for CAA!
This letter dashes my hopes that the CAA will ever change because Marc, who started it, couldn't get support for his ideas and concluded that the CAA will never change so he left.
He wanted the CAA to focus on giving PWC a platform for aggressive activism but they want to stay conservative and mainstream and not rock the boat among many other changes that many of us here would like to see.
I think it's such a shame that Marc wasn't listened to. If the founder of the CAA isn't listened to what hope do we have?
Good point. We may not be able to change CAA. For example, getting one excellent person on the board will have a marginal effect of getting these issues up in the Boards' grille at every meeting. But this will probably not result in any significant change in the near term. But this step will hopefully get the board to take some actions, even if small, which is better than having them take no action.
Every little thing we do does have an effect to either make CAA better or at least limit the damage it does.
This is why I am now strongly advocating that
everyone vote with their wallets and their voices. Keep complaining, but also refrain from contributing to CAA until they start meaningful change (and contribute instead to the orgs that
are advocating for us like WPI and 25%). Also
educate other pwME about what CAA is doing and urge them to redirect contributions to WPI. This will:
(1) reduce the damage they can do in the near term, and
(2) force the Board to change; they have a clear fiduciary duty to protect CAA from collapse, or if they don't change,
(3) forcemake CAA either
(A) abandon the non-research part of their job (to our benefit) or
(B) shrink and die. If the Board lets CAA die by refusing to change, we will know that CAA would never have changed, no matter what. If this is the case, then we are better off with it dying. (I do not want this to happen. I would be much, much happier if CAA just changed instead of collapsing. That said, will not change unless pushed to the brink, so that is what we have to do).
Please help me with this effort.
Our only hope is to band together in forcing change. I do not know the specifics of Marc Iverson and his situation. From this letter, I get the sense he was not willing to rally everyone together to go against CAA. It seems he felt it would be better to let it go than to wage a battle against it. This may be off base; please correct me. He was an amazing Chair and Founder, but he was only one person, who is sick like the rest of us. We may have better luck if we stick together and get more aggressive than he seems willing to have been. I think it was noble of him to support CAA even though it was going in a very different direction than he would have liked. With the passage of time, we have now seen even more proof that CAA was going in the wrong direction.
We have to try something different and up the ante or nothing will ever change.
Do you want to come back and read these posts in 10 more years wish " that we all just bit the bullet and faced that we were betrayed, not only by our governments and doctors, by our own patient organization. This would have been painful, but at least then we could have taken radical action to limit the damage it causes, or actually turn it around. Too bad I'm sitting here in 2020 still reading on the CAA website that there's no funding for "CFS", and that we should do CBT and GET. Too bad I'm still reading articles in the paper like "Chronic Fatigue: Are they Really Sick?" Too bad I and my friends from PR have been homeless for years with no health care now that my money ran out, I can't work and my government, doctors and family have abandoned me." This is what you will be regretting if we do not start doing everything we can to limit CAA's funding.
If CAA changes I will support them fully.
BTW-
is anyone still in contact with Marc Iverson or know how to get into contact with him? I'd love to get the godfather's wisdom on the whole situation!
