Author Archives: Jennie Spotila

2014 NIH Spending on ME/CFS Studies

There is no denying or avoiding the importance of the IOM report and its associated controversies, but ME/CFS advocates must keep eyes on the prize: NIH funding for ME/CFS research. The 2014 spending numbers are out and NIH did not … Continue reading

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PEM Differential

One of the post-IOM controversies consuming advocates at the moment is the concern that SEID criteria are non-specific and will include people who do not have our disease. The failure to list exclusionary conditions, including psychological disorders, has drawn criticism … Continue reading

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Your Move, HHS

Since the IOM report came out, the patient/advocate online community has been on fire. Everyone is staking out a position. You like the name, or you don’t; you think the definition will work, or it won’t. And I have plenty … Continue reading

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NPR Interview

Miriam Tucker has been covering ME/CFS for some time now, and published a great piece for NPR about the IOM report today. I was interviewed for the piece, and I can say that Miriam understands this disease, much like David … Continue reading

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IOM: Report Card

It’s here. A new case definition and a new name. It will take some time for me to get through the 300 page report and prepare a more detailed analysis. But based on the press conference and summary, how did … Continue reading

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IOM: The Big Day

On February 10th, the Institute of Medicine committee will release its report Beyond ME/CFS: Redefining an Illness. The release event will be webcast at 11am Eastern. The report contents are under embargo until the release, although rumors are flying about … Continue reading

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Guest Post: Slightly Snarky

Joe Landson authors this guest post on the chasm between patient experiences and the people who need to understand them. We suffer through many devastating symptoms, but today I’m only thinking of one. It’s perhaps the most devastating effect of … Continue reading

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Broken

My mother died last night. She was a very private person, which is why I have not spoken publicly about what my family has been through in the last two years. I was thinking to write about her now, because … Continue reading

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CFSAC Meets P2P

Mary Dimmock has been kind enough to provide this post and transcript of the CFS Advisory Committee’s discussion of the P2P report this week. Since the Executive Summary for the P2P ME/CFS Workshop was published on December 18, 2014, a … Continue reading

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P2P Library Now Available

As I promised in my previous post, I have created a library of public comments submitted to NIH on the P2P Panel’s draft report. You can view links to each comment on this page. I will update the page with … Continue reading

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