On the Clock Pt I: the NIH and ME/CFS (chronic fatigue syndrome)

February 19, 2009

Posted by Cort Johnson

We know the ME/CFS research program at the CDC is in big trouble but what about its cousin at the NIH? Three years ago the CFIDS Association of America was praising the CDC’s chronic fatigue syndrome program and slamming – in a federal document – the horrible performance of the NIH’s ME/CFS program.  The only thing that’s happened to change that viewpoint is the implosion of the CDC’s program; things are still as bad as ever over at the NIH.

Despite the chronic fatigue syndrome communities obsession with the CDC the NIH program is arguably the more important one. It’s the NIH, not the CDC that’s the center of medical research in the US. The CDC has traditionally been in charge of command and control operations regarding disease outbreaks (Centers for Disease Control) – but it’s the NIH  where the heavy research into the causes of disease have traditionally taken place.

A Bare Cupboard. Unfortunately, the NIH’s CFS program has basically been stripped bare over the past seven years. It’s now generally concentrated on a small kernel of mostly highly sophisticated (and very good) studies. Dr. Hanna’s plan to very slowly build the program outwards from this small kernel has dismayed advocates who aren’t eager to wait 10 or 15 years for the program to build itself to a semi-acceptable level.  They argue that the NIH – as it does with many diseases – should be taking steps now to increase the program’s productivity.

Dr. Hanna, the head of the NIH’s ME/CFS (chronic fatigue syndrome) research program, however, has repeatedly said that budgetary declines at the National Institutes of Health mean no more money for ME/CFS; not only are major advances like Centers of Excellence out of the question but even commonly used means of promoting interest in a disease such as Requests For Applications (RFA’s) are simply out of the question; budgets are too tight –  the money is just not there.

This is a devastating statement given the current state of the program. One would have to look in vain to find another disease that has such high costs yet receives so little funding. With low researcher interest and a grant success rate at near zero (8%) the program particularly needs the money-ready grants called RFA’s that  provide incentives for researchers to study the disease (and have higher success rates). Dr. Hanna’s statement essentially dooms the program to an astonishing level of mediocrity. But it is Dr. Hannah correct? Is the NIH’s declining (in real terms) budget the ME/CFS program’s main problem or is it something else?

A look at NIH funding across the past few years suggests there’s more to the issue than Dr. Hanna suggests. It indicates that no matter what the NIH’s budget fluctuations there are winners and losers among the diseases every year. In the next post we take a look  at them.

Next Up: On the Clock II: the Winners and Losers at the NIH Money Game


2 comments

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cort February 22, 2009 at 12:26 pm

What a great post Cort! I am happy and proud, really, to be the first person to comment on what I think will be an extraordinary blog – Keep up the good work.

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Barbara D. March 18, 2009 at 7:56 pm

Yes, let’s keep the heat on the NIH. Let us know what we can do in terms of advocacy. I have had M.E./CFS for nearly 20 years, so this matters a great deal to me. I will write letters & send emails, and I’ll work to enlist the “well” people I know to take up the fight.

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