Before my ramble, I'll start with full disclosure about my personal stance about the CAA. I basically support the CAA (and donate what I can when I can) for 2 reasons.
The first reason is a reason I feel good about: I think they've done some good things recently (in particular in the research area), and I believe that their shortcomings do not cancel out the good. The second reason derives from what I see as an unfortunate reality and an exercise in hope: I would like to see a national-level ME/CFS advocacy/research/educational organization accomplish big things; and while the CAA may not be that organization now, I do not see any alternative out there with both the experience and the POTENTIAL to be that organization (with now as the starting point).
That being said, I agree with the substance of almost all of the criticism that people have voiced, e.g., I agree 100% about the harmfulness of having outdated literature about GET on their website (the face of the organization), and likewise about representing the most severely affected. We know Ms. McCleary knows about the dire physical, social, and financial situations many patients are in, we know many of the Board members are deeply personally affected - and yet, the point is that we are not able to see that stark reality readily represented in the CAA's online literature.
I think one thing I've learned from these discussions concerning the CAA (and which is also evident by even a cursory look at CAA's public materials regarding their staff size and budget) is that while it may be the most visible national level organization for ME/CFS, it is a very small organization in the scheme of things. There is a disconnect between the CAA appearing to be the leading, national organization for the disease (and holding itself out as such), on one hand, and how much it is actually capable of logistically accomplishing given its smallness, on the other.
But as long as the CAA holds itself out as the leading organization committed to making advances in research, advocacy, and education, the CAA will predictably fall short of patients’ expectations in one or all of these areas. There will always be legitimate shortcomings that patients will be perfectly justified in pointing out (and I'm grateful there have been avenues of communication to do just that, like the ones that led to the removal of that awful Alex Howard article), and there will always be a legitimate defensive argument that Ms. McCleary, Dr. Vernon, their 6 (or so) staff members and the Board of Directors are talented, dedicated people that are accomplishing a lot in light of their limited size and resources.
This is simply because in order to get the kind of results we want, there is a need for exponentially more resources in all of these areas than what is currently available to the CAA, WPI, and other privately funded organizations, and what the federal government is currently spending on this disease combined.
The reality is that the CAA cannot possibly accomplish what they say they are working to accomplish or what we each want even if Kim McCleary pulled multiple all-nighters a week. That is why, as much as I approve of their forays into funding research that no one else is funding, my wish is for the CAA to focus more on advocacy: the kind of super smart, super aggressive, out of the box advocacy that will lead to the kind of attention, money and resources that other diseases like MS and Parkinson's have, from private donors, federal funding (MS is allotted something like $150 million in NIH grants and CFS $3 or $4 million), and big pharma. There's no reason this has to be a pipe dream.
I understand the CAA's current answer to this problem is that it costs money to hire expensive PR/lobbying consultants to get this done which it simply doesn't have, but I don't see that as a satisfactory answer - not in the context of assessing whether the CAA is making good budgetary decisions or whether Ms. McCleary is doing a good job under the circumstances, but in a broader context of advancing our common goal of seeing real medical, physical, scientific progress for this disease within our lifetimes - something the CAA explicitly purports to be trying to accomplish.
Unless we luck out and XMRV is the end all and be all that leads to the answer to all problems for all patients, and that the government and research institutions will voluntarily see to it themselves that funding for ME/CFS (as opposed to just XMRV) is exponentially increased, given the painfully slow pace of science, I just don't see this goal being met unless the government and/or big pharma are forced to add serious digits to the puny amounts spent on this disease.
On a final note, i.e. apart from my fantasy that the CAA will find a way with their existing staff or hire the right people to catapult ME/CFS to the same ranks as MS with respect to funding and research, not all advocacy efforts have to cost a lot of money. For example, I find it hard to grasp that it would be prohibitively expensive to assign one smart staff member or capable volunteer Board member over a few weeks to the project of overhauling outdated informational material on the CAA’s website (e.g., re CBT and GET) and to more visibly depict the reality of severely disabled patients.
It would certainly be an encouraging sign to supporters and would-be supporters that the CAA is listening, and evolving/willing to change its conservative style with the times (and the urgent needs of patients).