CFIDS Association President Kim McCleary Rips CDC Management of Chronic Fatigue

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CFIDS Association President Kim McCleary Rips CDC Management of

Chronic Fatigue Syndrome Research Budget

November 7, 2008

ProHealth - Santa Barbara,CA,USA

http://www.prohealth.com/library/showarticle.cfm?libid=14064

" You're all familiar with the infamous `Bridge to Nowhere.' Let me

introduce you to what I call the `Research to Nowhere. " – Kim

McCleary

The CFIDS Association's November 2008 CFIDSLink e-newsletter, just

out, provides a timely summary report on proceedings at the Federal

CFS Advisory Committee Meeting - held in Washington, DC, October 28

and 29.

Serious Funding Issues Reminiscent of 1998

One highlight of the report is a transcript of CFIDS Assoc.

President Kim McCleary's straight-from-the-shoulder testimony to the

CFSAC, presenting a detailed analysis of the CDC's CFS research

budget spending and oversight since 2004.

Though McCleary had originally planned to discuss public/private CFS

research & education partnerships, she instead felt " forced to

confront serious funding issues with the CDC research program, just

as we were 10 years ago, in April 1998. " (When it was determined

that $12.9 million reported as spent on CFS research was actually

allocated to other programs.)

According to the CFIDSLink Report, and as detailed in her compelling

testimony, McCleary:

• " Questioned CDC leadership, accountability and performance related

to three contracts the CFS research program funded totaling more

than $9.8 million that produced few results in 4 years. "

• " Stated that her testimony followed an extended series of

discussions with CDC and that information about spending and

obligations was provided by CDC, but it was not critically assessed

by those with authority to alter the ineffective commitment of large

amounts of money to unproductive contracts. "

• And " expressed concern about the peer review and urged the

Committee to make recommendations that would lead to immediate

corrective actions. "

Transcripts of Other Presentations Submitted as Public Testimony

Include:

• A proposal by CFIDS Association Scientific Director Suzanne D.

Vernon outlining the benefit of a coordinated national CFS research

network of government, academic, and private entities, guided by a

clear understanding of the CFS research priorities, and sharing

data, findings, and specimens.

• Researcher n Dix Lemle's explanation of her intriguing

hypothesis that dysregulation of hydrogen sulfide metabolism in the

cells' energy generating mitochondria plays a role in the multi-

system disturbances of ME/CFS.

• CFS patient 's testimony regarding the economic burden

patients bear when unable to work, and the need to explore

difficulties associated with efforts to obtain Social Security

Disability benefits (in stark contrast to other disabilities such as

MS or limited vision).

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This is not acceptable

Posted by: outofstep

Nov 7, 2008 Was this review helpful? 1 0 Total Score:

1

It is absolutely outrageous that the CDC is (apparently) once again

squandering research money for CFS. From the very beginning they

have treated CFS like it is a joke, unworthy of their attention. Now

over 20 years later they are still plodding down the same, wrong

research path. Calling people in Georgia and asking them if they are

tired is not valid CFS research at this point. The CDC's case

definition is inaccurate-why do they refuse to adopt the more

accurate Canadian case definition? The CDC's emphasis on psychiatric

research for CFS is outdated and not useful, particularly in light

of recent genetic research-why aren't they looking at viruses? The

CDC should be ashamed of its track record, and needs to look at how

much progress the private sector, in partnership with other

government agencies and universities, has made in discovering a

test, treatment and cure for CFS. Then the CDC needs to model itself

after people who are accountable, and who actually care about CFS

patients. If the CDC continues to mismanage the millions of dollars

that they are given, then that money should go to researchers who

will value it and put it to better use. Thank you Kim McCleary for

fighting for us.