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Looking Back – At the CFID’s Association

Posted by Cort Johnson

John Herd’s recent post on the past and future of ME/CFS advocacy provided a welcome change in tone from many of the strident posts we’ve seen lately and provided much room for thought.  An important part of the post, however, was more of the same; while the post’s 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 CFID’s Association’s activities over the past few years derived not from an intention to benefit the patient community but were simply callow money grabs.   It’s an idea that’s been passed around again and again in discussion groups. This is what it said

In turn fewer and fewer patients supported the CAA which showed dramatically in a huge decline in membership revenues.

Sustaining revenue is essential to any organization so the CAA sought a bold solution, namely that of becoming a subcontractor for the Centers for Disease Control and Prevention’s (CDC) CFS program. Many in the ME/CFS patient and medical sectors viewed such a move as a blatant conflict of interests. Holding such a position the CAA’s political advocacy became increasingly lethargic — it wasn’t going to bite the hand that was feeding it.

In time contracts run out and such was the case with the CAA’s CDC contracts. Though the CAA gave the impression of pulling away from the CDC, this may have been more of a preemptive PR move taken while it still could, before the contract expired. Such a PR move may have seemed good strategy to hopefully win back support from those the CAA would need as they reinvented themselves yet again, this time as a research funding and very possibly research network administrative organization. Such a direction would make sense.

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 CDC’s 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 let’s take a look at what it did suggest. Was the CFID’s 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 CFID’s Association of America Relies on its Membership To Pay Its Bills –  The CFID’s 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 it’s 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 it’s 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 CDC’s issues of fiscal mismanagement have not been ongoing. Prior to the period in question the CDC’s 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 CFID’s Association was not reporting on the CDC’s 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 CFID’s 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 CDC’s CFS research program; direct financial losses and, if John’s Herd’s 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 couldn’t figure out what that meant. I suspected it was just talk.

But at the Reno Conference I found out that the CFID’s 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 CDC’s the ability to hold up or withhold funding from the CAA could potentially cause it a great deal of trouble and that’s apparently exactly what’s 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 CFID’s Association, however, had a objective that would not wait. With the CDC’s CFS research team undergoing it’s 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 [B]its[/B] own records and possibly engage in legal action against it. In a sense the CFIDS Association’s 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 CAA’s activities with the CDC? It’s 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 CDC’s program declined and evidence of fiscal mismanagement occurred the CFID’s Association of America acted appropriately and brought it to our attention.

Misperception #5- The CAA’s Research direction is unclear. The post also suggested that we don’t 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 CAA’s 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 he’d 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 Meirleir’s 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 Lab’s 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 he’s 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 don’t and one side surely didn’t in this case then it’ll be more of the same; tepid activity, poor patient support, federal bureaucrats in control of our agenda, and more years of stagnation. Let’s have a real discussion: a discussion of how we can come together to effect change.

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