Category Archives: Advocacy

P2P Agenda: What the Huh?

Less than six weeks from the NIH P2P Workshop on ME/CFS, and we now have an agenda with speakers and talk titles.¬† So is it good or bad? I reached out to the six ME/CFS members of the Working Groups … Continue reading

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Comments on P2P Systematic Evidence Review

After four weeks of intense work, a group of advocates has submitted forty pages of comments on the P2P systematic evidence review. We published a summary of our comments last week. If you want to read the full document, you … Continue reading

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Evidence Review Comments Preview

This post comes via Mary Dimmock, Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution and a link back to this post. You are also welcome to use this (and other material … Continue reading

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They Know What They’re Doing (Not)

This post comes via Mary Dimmock, with assistance from Claudia Goodell, Denise Lopez-Majano, and myself. You are welcome to publish it on your site with attribution to Mary Dimmock.   Last week, Jennie Spotila and Erica Verillo posted summaries of … Continue reading

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A Review of the P2P Systematic Review

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS was published online last week. It’s a monster – 416 pages in total. I know many ME/CFS patients may not be able to read this report, so in … Continue reading

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Mary Dimmock: Fight the Power

The draft P2P evidence review report has been issued and we have all had a chance to see just how appallingly bad it is. Now the question is what to do next. Some have called for us to oppose P2P … Continue reading

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NIH Says No, and Also No

With no announcement or fanfare, the CFS Advisory Committee has posted a response from HHS to the June 2014 recommendations. My information is that¬† – inexplicably – even CFSAC members were not notified when the response was posted. I urge … Continue reading

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Draft Systematic Review is UP

The draft systematic evidence review on the Diagnosis and Treatment of ME/CFS has been published. This review is extraordinarily important because it is being presented to the P2P Panel in a closed door session any day now. This review will … Continue reading

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P2P Participation, Part 2

I have new information on participation in the Pathways to Prevention ME/CFS Workshop: The Office of Disease Prevention confirmed via telephone that the public will be able to participate in discussion at the P2P Workshop, in person and online. ODP … Continue reading

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Charter Changes

It came down to the wire, but HHS Secretary Sylvia Burwell has renewed the charter of the CFS Advisory Committee. While there are no sweeping changes to the charter, some of the changes may have you scratching your head. CFSAC … Continue reading

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