Category Archives: Advocacy

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

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , | 42 Comments

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

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , | 35 Comments

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

Posted in Advocacy, Commentary | Tagged , , , , , , , | 19 Comments

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

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , | 61 Comments

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

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , | 19 Comments

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

Posted in Advocacy | Tagged , , , , , , , , , , , , , , | 8 Comments

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

Posted in Advocacy | Tagged , , , , , , , | 2 Comments

P2P Obstacles

Are you working on your comments on the P2P Panel’s Draft Report? I hope so! Unfortunately, the Office of Disease Prevention (ODP) has taken several actions that create barriers in the commenting process. I have details, and I suggest several … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , | 15 Comments

Laura Hillenbrand is Not Your Bitch*

Laura Hillenbrand is a New York Times best selling author, and one of the most prominent public figures to speak out about having ME/CFS. She has donated hundreds of thousands of dollars to ME/CFS research, has discussed her struggles with … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , | 34 Comments

P2P Report: First Read

The P2P Panel’s draft report on advancing ME/CFS research has been published. The report is not the nightmare that many people feared, but it is also not what I had hoped for or what we need. The advocacy chatter I’ve … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 38 Comments