Missed Opportunities Dog Efforts at Change

Posted by Cort Johnson

The CFIDS Association of America generated a shockwave when Kim McCleary stood up at the federal advisory committees November 2008 meeting and accused the CDC’s CFS research program of wasting millions of dollars and engaging in poor research and said the program’s leader, Dr. Reeves had to go. The CAA would go on to slam the CDC again and again over the next six months.  They did it alone.  And they shouldn’t have.

Our Missing National Group – The CAA has primarily been a patient support organization and thus lacks some clout with regards to research issues. There is a group, though, that potentially has plenty of clout at the research level. The problem is that you’d never know it. In fact much of the time you wouldn’t even know that they exist. They are called the IACFS/ME; they’re our professional research organization and the 500 members they give the m the clout to go toe to toe with the CDC or anyone else on a research issue.

In fact it’s them, rather than the small team at the CDC, that should be leading this field on it’s critical issues;  how to define this define this disease, what the research priorities are, what the treatment guidelines should be, etc.. That is what professional medical organizations do: providing leadership is one of their primary reasons for being.

Yet for most of its existence the IACFS/ME has been known for one thing for one thing only; putting on International Conference every two years.  In a field that is awash in controversy it’s hardly ever stirred itself on policy matters. The Empirical Definition was created with nary a protest from them. The fourfold increase in prevalence figures left the organization unfazed (It’s only ‘action’ was to allow Dr. Jason to publish an editorial on them). Given their lack of activism was it any surprise that the CDC went to the CFIDS Association of America and the CFSAC to get suggestions about the makeup of the external review panel but didn’t  bother to contact the IACFS/ME. Why would they?  Our big professional organization has simply has not been considered an important stakeholder by anyone.

Dropping the Ball on the CDC Or How to Lose a Once a Decade Opportunity – Given their history  it’s not surprising that the IACFS/ME  almost completely dropped the ball on the CDC review. An organization that was on the ball would have stood shoulder to shoulder with the CFID’s Association of America in October of last year in the midst of the CDC’s review process and provided a scathing critique of the CDC’s program.  An active organization would have demanded a seat on the External Review Panel.  Once inside they would have asked some hard questions. Unfortunately they were nowhere to be seen.

Nor did our federal advisory committee  (CFSAC ) do any better. Knowing that the program was under review the CFSAC’s last motion regarding the CDC before the October meeting was to applaud the CDC for for ‘their openness and willingness to share financial details over the last six months” and for a ‘new kind of relationship’ developing between the NIH and the CDC.

It turned out that these organizations inability to exert themselves forcefully early on has had real costs.  During the critical early period when the CDC appeared to be receptive to change the CFID’s Association of America was the only organization leading the charge. That left it easy for the CDC to focus entirely on the External Review Panel’s laudatory report when it came out and that’s  exactly what happened. Once the External Reviews Report came out doors that appeared to be opening slammed shut and the CDC  circled their wagon’s around Dr. Reeves. They have never made an effort to address the CAA’s critiques.

Rewriting History – Would they have been able to do that if the IACFS/ME  and CFSAC had weighed in earlier? Think of how much more clout the CAA would have had if they could have said, sitting in Senator Harry Reid’s office, that this isn’t just us (the patients) but the IACFS/ME and CFSAC as well.   Think of how different that external review report might have been if those four reviewers had come to their review with their ears ringing with the critiques of their peers.

Think of how much harder  it would have been for the CDC to use that one (four person) External Review to block out critiques from three groups rather than just one. It’s hard to believe that they could have. With that kind  of charge hard to believe we wouldn’t be seeing major change right instead of fighting a last effort to change the status quo.

The IACFS/ME stumbled again when they all they managed to get to the Public Review was a short statement taking the CDC to task for their poor management of the review process.  But after that both the IACFS/ME and CFSAC showed up strongly as they made emphatic statements about the direction of the program and the need for new leadership.

The missed opportunities loom large but both groups appear to be  waking up.

Next Up: the Mouse Roars – IACFS/ME Asks for Major Changes in the CDC Program

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