Tuesday, November 11, 2008

CDC research funding scandal 2.0

Some of you ME/CFS readers might remember that ten years ago the Centers for Disease Control (CDC) got caught misusing money Congress had appropriated specifically for CFS research by using it for other diseases instead. At the time, CDC employee/CFS researcher Bill Reeves blew the whistle on his colleagues and went on to take the lead in CFS research, including reallocating the misspent money for the research it was intended.

But, alas, it is now Reeves who has been apparently caught misappropriating money. And this time, instead of the money going to other research, it's simply going to a pet contractor.

Kimberly McCleary, president of the CFIDS Association, testified (hat tip: Co-Cure) before the Department of Health Human Services CFS Advisory Committee at the end of last month about her outrage at having to confront serious funding issues at the CDC regarding CFS research yet again.

Based on information we have obtained directly from CDC officials (thank you to Sarah, Mike and Steve for the improved transparency over the past 5 months) and available on public information sites, the “boom” of CFS research that occurred during the “payback” phase from 1999-2005 has eroded to a “bust” of shameful scientific leadership, zero accountability, invisible outcomes and millions and millions of dollars stuck in suspended animation, if not wasted. At least in the 1998 scandal, science was being conducted that would aid discoveries in other diseases. This time, only the government contractors seem to be benefiting from millions spent for which there are no worthwhile outcomes for American taxpayers, or CFS patients.

Infuriating? Yes. I think many of us patients who have been following the current research at the CDC have felt like it was simply stagnating, and now we know why and how.

But I think there are a few hopeful things here. I've been glad to see the CFIDS Association back away from its relationship with the CDC in the last year and now forcefully and publicly confront it.

I also feel hopeful because last time the funding crisis brought an infusion of money into ME/CFS research, as well as a change in personnel. Reeves getting caught being naughty just might be the means of getting rid of him and his view of ME/CFS as a "mind-body condition." Indeed a few months ago at the cfs_research Yahoo group I said something to the effect that Reeves getting caught in a 1998-like scandal would probably be the best thing we could hope for in terms getting new leadership and research at the CDC.

I just didn't think it would actually happen.

Update: This comment from the NIH representative, Dr. Eleanor Hanna, was music to my ears:
NIH does not have confidence in the new definition for CFS being used by CDC and that it had resisted using the higher prevalence figures in its materials for that reason. She conveyed her concern that the use of different definitions made it difficult to compare results from CDC-funded research and NIH-funded research, and that this would present greater problems as treatments are studied.
Drs. Lucinda Bateman's and Nancy Klimas's comments are also spot-on.

Unfortunately, it sounds like the CFS Advisory Committee, and in particular, its research committee, did not share the urgency and dismay of McCleary, Hanna, and various clinicians and patients.


Guess that means we gotta keep pressing the issue. And perhaps the recent election presents us with new opportunities.