CDC Funding for Chronic Fatigue Syndrome Restored / NIH Budget Increase Good News ME/CFS Expansion

[Cort]

An accord on spending worked out by House and Senate negotiators has been reached. The entire package will be voted on by Congress on Friday. No changes in CDC or NIH funding are expected.This looks like it's it for 2016 - and the news is good.

CDC Funding Restored

Seeing the CDC's budget for chronic fatigue syndrome (ME/CFS) inked out because of inattention was a wake-up call but advocates responded. Many patients and supporters sent emails protesting the move, and a team of advocates meet one on one with Appropriation's Subcommittee staffers. The end results turned a negative into a positive.

[fright]

[/fright] Appropriation Subcommittee staffers (the ones who actually draft the bills) are now fully aware and supportive of the ME/CFS communities needs. (Chol Pak, the member of the Senate Appropriation's subcommittee in charge said he read every email sent to him. That was a lot of emails.)

When the opportunity came Pak worked to successfully reinsert the funding. ME/CFS advocates are now fully aware of what went wrong and it won't happen again. The incident also gave the ME/CFS community to take another look at the CDC's ME/CFS program over the past couple of years and most people liked what they saw.

• The CDC’s Chronic Fatigue Syndrome Research Program: Boon Or Bust? – A Review

The return of funding will allow the CDC to continue with it's major expansion of the multi-site experts study including an exercise study that will examine gene expression, lactate levels and cognition. The expansion will include severely ill and pediatric patients for the first time. I have also heard that the CDC is also assessing natural killer cell testing with hopes of producing a test that is readily available.

National Institutes of Health (NIH) $2 Billion Dollar Increase Sets the Stage for ME/CFS Program Expansion

The NIH asked for about $30 billion dollars for 2016 but the Senate and House were in a giving mood and they were given $32 billion. A major increase - the biggest in over ten years - has been anticipated for quite some time.

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[/fright]NIH Director Francis Collins cited a possible increase as a way to quickly increase ME/CFS funding. Some of the increase is already accounted for by line-item appropriations for Alzheimer's and Brain research but surely enough is available to produce a major increase in ME/CFS funding.

It'll be very important to be able to take advantage of this increase for two reasons:

1. It's a rare opportunity to latch onto new funding that may not come again for awhile;
2. The influence of the IOM and P2P reports is at their height. The have been critical in generating new attention for ME/CFS and their influence will only wane over time.

A lot of diseases will want their piece of the new funding pie. Will ME/CFS finally get its?

Now is where the rubber meets the road for Francis Collins and ME/CFS. He has promised that the NIH will move aggressively to increase funding for ME/CFS, and he has said he's not talking about small increases. Now we shall see.

 

[Esther Siebert]

So the question is what advocacy should we do--could any group go on TV--to bolster the NIH's good intentions into the most amount of real dollars we can get?

 

[Kym]

That's great news. How can we write or email Francis Collins? This seems like a window that might get slammed shut if someone or something considered more influential nabs it. We can't wait. We've all mediated, gobbled vitamins, walked, paced ourselves into flares and it is no way to live the rest of our days. I, for one, want a refund for all the days I've lost to CFS/Fibro and the string of other disorders that trail it. Also, return my lost career, retirement savings, social life, and confidence. Barring that, CURES NOW, PLEASE!