Author Archives: Jennie Spotila

RFA Ticker, 1/23/17

Second verse same as the first. The wait continues. Two dates are coming: January 31st, by which Dr. Francis Collins said the RFAs would be issued. February 1st, on which NIH will hold another ME/CFS advocacy call. Call-in information has … Continue reading

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CFSAC Public Comment, January 2017

I prepared comments for the January 13, 2017 CFS Advisory Committee meeting, but when my time arrived I decided to wing it. Below is my best reconstruction of what I said, a mixture of my prepared and spontaneous remarks. Start … Continue reading

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RFA Ticker, 1/16/17

NIH issued no RFAs last week, but we have plenty to talk about after Dr. Vicky Whittemore’s presentation at the CFS Advisory Committee on Friday. Dr. Whittemore’s announcement was simultaneously welcome and disappointing. During her update to the committee on … Continue reading

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Comment by Terri Wilder, 1/12/17

Terri Wilder made these remarks at the January 12, 2017 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission. Good Afternoon- My name is Terri Wilder and I’m a person living with ME. … Continue reading

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Another Reason to Stay

My Mom played the cello every day, even while enduring chemotherapy. Her last lesson was less than two months before she died. Mom loved the cello, but I never really understood her dedication. Even when I took piano lessons as … Continue reading

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RFA Ticker, 1/9/17

So. Is anyone surprised that it is January 9th and we do not have the promised RFAs? I didn’t think so. Will we hear an announcement at the CFS Advisory Committee meeting this week? I don’t know. The question that … Continue reading

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Zero, Zilch, Zippo

Zero, zilch, zippo, nada, cero, null, nulla, sifr, nul’, ling, nialas, sero, naught. No matter how you say it, we got nothing. Despite the promise in October 2015 that a request for proposals would be issued “soon.” Despite Dr. Collins’s … Continue reading

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CFSAC Meeting Information and Logistics

The federal CFS Advisory Committee meeting is only two weeks away. This will be an in-person meeting, but will not be held in the Health and Human Services building. Denise Lopez-Majano and I reached out to HHS for important information … Continue reading

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A Myalgic Carol

Or, A Most Merry Tale of Encephalomyelitis, by Joe Landson Dr. Stephen Straus was surely dead. Lo, he had been dead these nine-and-one-half years, but that made no difference to Ebenezer Scrooge, MD, PhD, as he locked up the Office … Continue reading

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RFA Ticker, 12/26/16

No Christmas joy for ME/CFS research at NIH. Only two RFAs were issued last week, and neither were the RFAs promised to us. It appears that the RFAs are coming . . . at some point. Dr. Vicky Whittemore told … Continue reading

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