John Herds recent post on the past and future of ME/CFS advocacy provided a welcome change in tone from many of the strident posts weve seen lately and provided much room for thought. An important part of the post, however, was more of the same; while the posts tone was mild the post itself too often lapsed into a kind of seamy and mostly baseless conjecture we see too often.
Essentially the post asserted many of the CFIDs Associations activities over the past few years derived not from an intention to benefit the patient community but were simply callow money grabs. Its an idea thats been passed around again and again in discussion groups.
This is what it said
This kind of discourse which consists of ugly intentions for just about any activity is not uncommon. In this kind of conversation no good deed goes unpunished; a national media campaign is cast in the light of a money grab to support a failing organization; an investigation into the CDCs lagging productivity is done out of pique or is another type of money grab. Acting to wrestle resources out of a government agency becomes enabling it. A recovery story is nothing more than a scam.
This post did not suggest all these but lets take a look at what it did suggest. Was the CFIDs Association ability to compel the CDC to mount a Provider Education Program nothing more than a money grab? Or was it an honest attempt to get more recognition for this disease? A little digging suggests that the argument is based on misperceptions which are easy to clear up.
Misperception #1: The CFIDs Association of America Relies on its Membership To Pay Its Bills - The CFIDs Association gets money for its day to day operations from members who provide monthly contributions and from its major donors not from its membership dues. The thirty-five dollar membership essentially pays for the publication of four issues of the Chronicle every year. The 2007 Annual Report (the last available on the website) indicated that the membership dues provide 10% of the organizations operating budget. Donations, on the other, hand make up about 90% of its budget. This is nothing new; every year the CFIDS Association goes on a separate funding drive to pay for its daily operations.
The history of the organization suggests that its been doing fine financially. About the same time this it was purportedly about to tank financially it took on a major new and risky effort. First it hit up its donors for a Million Dollar Research Initiative. At the end of that campaign it hit them up again for its operating funds. Because it did the Research Initiative first it ran the risk of the well running dry when it launched its operating campaign. These are not the actions an organization that was on the ropes financially would take.
Misperception #2 - the CAA Could Have Taken on the CDC At Any Time But Chose Not: The CDCs issues of fiscal mismanagement have not been ongoing. Prior to the period in question the CDCs CFS research program, in fact, was on fiscal oversight. It was only after the oversight lapsed that the productivity of the program slowed and money started getting flushed down the toilet; i.e. the CFIDs Association was not reporting on the CDCs fiscal issues not because it was enabling the CDC but because its fiscal problems had not occurred. The program was put on fiscal oversight to ensure that those kind of fiscal issues did not occur.
Misperception #3: The CFIDs Association of America Had Nothing to Lose and Everything to Gain by Attacking the CDC- The CAA ran two risks when it attacked the fiscal mismanagement in the CDCs CFS research program; direct financial losses and, if Johns Herds thesis is correct, the threat of legal action.
The possibility of retribution from the CDC was brought up by the CFSAC panel. Kim McCleary declined to comment on that and I couldnt figure out what that meant. I suspected it was just talk.
But at the Reno Conference I found out that the CFIDs Association of America is still receiving payment for the services it provided for the CDC. If my understanding is correct the CAA provides the services (i.e. foots the bill) and then bills the CDC for them. (This is apparently why so much funding is classified as restricted in their annual reports). This meant the CDCs the ability to hold up or withhold funding from the CAA could potentially cause it a great deal of trouble and thats apparently exactly whats happened.
Once the CAA started their investigation the CDC apparently began to engage in an ugly pattern of petty requests, late payments and astonishingly snide (and amateurish) comments from CDC personnel. The fact that this happened in the midst of the worst economic downturn since the Great Depression of course, only exacerbated matters for the organization.
A smarter organization would have waited until it had received all its payments from the CDC to take it on in the public arena. The CFIDs Association, however, had a objective that would not wait. With the CDCs CFS research team undergoing its 10 year evaluation the CAA faced a once in a decade opportunity to institute major changes in a program they felt was failing badly and they took it despite the knowledge that doing so could expose them to retribution.
Misperception #4: The CFIDS Association of America Is Engaging in Some Sort of Fraudulent Activity: The idea that the CFIDS Association is paying for its operations by siphoning money out of the funds for the Media and Provider Campaigns does not hold water. For one it proposes that the CAA is engaging in fraudulent activities for which it could be held legally responsible. It would be a strange thing, if that was true, for the CAA to give the CDC an excuse to dig deeper into its own records and possibly engage in legal action against it. In a sense the CFIDS Associations rigorous attack on the CDC provides all the evidence one needs to conclude that it was not using CDC funds to run its operations.
What is the most logical conclusion to the CAAs activities with the CDC? Its the simplest one.
One: that the CAA spied an opportunity to get the CDC to pay for a nationwide media campaign on the behalf of ME/CFS patients and it acted on it.
Two: that when the productivity of the CDCs program declined and evidence of fiscal mismanagement occurred the CFIDs Association of America acted appropriately and brought it to our attention.
Misperception #5- The CAAs Research direction is unclear. The post also suggested that we dont which way the CAA is going to go with its research (presumably behavioral or physiological)
The question amongst ME/CFS doctors and patients alike is what are the CAAs actual views about the illness, possible etiology and what direction will they attempt to take research in with their funding. That we will have to wait and see.
Perhaps if John would took a look at their past and present research projects hed have a better idea of what the CAA thinks causes this disease. The CAA is funding studies
- that will elucidate the gastrointestinal microbiome in ME/CFS patients; this should enable them to help determine if Dr. De Meirleirs assertions are correct
- that are identifying high rates of lactate in the brains of ME/CFS patients suggesting mitochondrial problems are present
- that are uncovering abberrant receptors that maybe informing patients brains that extensive muscle damage is present (when its not) triggering fatigue and other signals in the brain
- determining whether endogenous retroviruses are active in this disease
- why so many patients have trouble standing (postural tachycardia syndrome)
- The CAA recently funded the Pacific Fatigue Labs work which indicates that many people with this disorder have a fundamental metabolic problem that keeps them from exercising.
A Central Question? - John is also concerned about what the CFIDS Association believes causes this disease is. Without directly saying so hes clearly implying the CFIDS Association of America may believe there is a behavioral etiology to this disease. Why does he believe this? Neither their research projects nor their publications nor their public statements suggest they do. The leader of the CAA, Kim McCleary recently publicly stated that CBT is not a viable research pathway and the CDC to task for including it in their future studies. (Kim McCleary, is also married to a man whose mother has been one of our fiercest advocates. This woman stood up at the CDC review session and lambasted the CDC for their horribly ineffective approach to this disease.)
There are things you can take the CAA to task for; not being confrontational enough, for not engaging patients enough, perhaps for not employing the best strategies. These are the things we should be discussing. The CAA has a responsibility to conduct itself in the professional and effective manner but as John noted in a recent post patients also have a responsibility to be informed about the issues they are speaking and to speak in a constructive manner.
If both sides hold up their end of the bargain our possibilities of making a difference in this disease are enhanced greatly. If they dont and one side surely didnt in this case then itll be more of the same; tepid activity, poor patient support, federal bureaucrats in control of our agenda, and more years of stagnation. Lets have a real discussion: a discussion of how we can come together to effect change.
Looking Back - At the CFIDs Association
Blog entry posted by Cort, Aug 22, 2009.