Everything comes from patient donations so far as I know. I don't know if that's the exact salary but whatever it is it is alot of money -particularly in relation to most of us. The CAA says that its a pretty much standard salary for someone in her position and I believe that as well. The Board has to approve her salary, I believe, and if you look at the board they look like pretty smart and independent group of people a good number of whom have CFS.
My guess is that people want the CAA to be more aggressive and inflammatory in the advocacy area and because they are not being more aggressive they are coming up with reasons why.....one of which is kowtowing to the government. I think the CAA believes they are working in the best way possible - for the patients. They are trying to achieve results...they want to achieve results - that is their focus and they do actually achieve results - not as many as we would wish but they do.. Relative to other advocacy organizations they are a small drop in a big pond.
Why has the CAA been unable to change the world on CFS for us. Check this out: I still remember doing lobby day and seeing advocates for multiple sclerosis all over the place. We were seeing staffers and watching them get into see Senators and Congressman. They were obviously MUCH MORE EFFECTIVE at getting access to the policymakers than we were. Why?
On the face of it they shouldn't be. THere are three times as many people with CFS in the US than MS patients (approx 1,000,000 - 330,000). By numbers alone we should be getting into those offices.
The difference is in the two organizations. The MS Society
got $50 million in support from its patients in 2008. Its total assets are well over $100 million (you couldn't tell from its website

). The CFIDS Association gets less than a million dollars from its patients and its total assets are around $2,000,000.
You have an organization with 50 times less resources battling with an organization with 50 times more resources for attention on the Hill. We know who's going to win that battle. And its not just MS, its breast cancer, heart disease, diabetes, alzheimer's, parkinson's etc. We are going to lose ALL of those battles - all of them! We are always going to be at the very bottom of the stack.
Of course there are lots of reasons why raising money and advocating for CFS is much more difficult. Only 20% of CFS patients are reportedly diagnosed. The community is poor, it is divided over lots of different issues, and its not a happy community; its a community that, by and large, XMRV being the notable exception, is more interested in what's wrong than in building on what might work.
Its a community that is steeped in its history - that lives in its history - no knock there - there's not alot of positive stuff going on

- but still that means there is not alot of attempt to transcend history and build a positive force for change. To some extent you have to do that...you have to give up your gripes and anger; basically your heart felt beliefs and interpretations in order for something else to show up. Nelson Mandela did that with S. Africa; he declared this was a new day and they would be moving on.