Author Archives: Jennie Spotila

RFA Ticker, 11/28/16

A short week due to the Thanksgiving holiday doesn’t slow NIH down, apparently. More than $40 million was committed to RFAs last week. ME/CFS research didn’t even get the giblets. Will we be more successful in December? Here are the … Continue reading

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The Government Attitude Needed

Government/advocate interactions frequently happen on a public stage, where everyone is rightly careful about what they say. Sometimes, though, we can get access to behind the scenes communication. In emails that the authors probably believed would remain private, we can … Continue reading

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RFA Ticker, 11/21/16

The big news (apart from the election, of course) is that Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative had a brief meeting with Dr. Francis Collins, Director of NIH. SMCI reported: Dr. Collins could not offer … Continue reading

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RFA Ticker, 11/14/16

It got a bit crazy with NIH last week, didn’t it? The talk by Dr. Shorter went ahead as scheduled on November 9th, much to the chagrin of the entire patient community. Afterwards, NIH issued a follow up response which … Continue reading

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The Proverbial Olive Branch

In what will probably be the last word from NIH on the invited lecture by Dr. Edward Shorter, the Trans-NIH ME/CFS Working Group has issued a follow up response to the ME community. For background, read my open letter to … Continue reading

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Small Steps of Progress

Progress, no matter how small, is still progress. Any tiny incremental change advocates can achieve is improvement, and it’s important to acknowledge when it happens. I am pleased to report that NIH has taken a small step towards providing more … Continue reading

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RFA Ticker, 11/7/16

We learned a bit more about NIH’s plans for ME/CFS RFAs during last week’s NIH telebriefing. In response to a comment from Bob Miller, Dr. Koroshetz said that funding for the research consortia centers will be “significant” and “equivalent to … Continue reading

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Enough Is Enough

After I pointed out to Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, that NIH had invited a speaker who has publicly insulted people with ME/CFS and anyone who takes this disease seriously, Dr. Koroshetz responded that “inclusion … Continue reading

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Dr. Koroshetz Responds

I just received the following letter from Dr. Koroshetz: Below is a letter from Dr. Walter Koroshetz Dear members of the ME/CFS community, I appreciate the concern of many in the ME/CFS community as expressed in Ms. Spotila‚Äôs blog post … Continue reading

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An Open Letter to Dr. Koroshetz

The following text is an open letter that I sent to Dr. Walter Koroshetz, Director of the National Institute of Neurological Diseases and Stroke. A plea for sanity, respect and science Dr. Koroshetz, I write to you tonight to personally … Continue reading

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