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The extensive publicity the IOM report received is changing things. Check out what Dennis Mangan recently noticed..

“I am amazed (and delighted) at how many people I meet who NOW have heard of CFS/ME (SEID)!   Beyond public awareness, internal (government) awareness of CFS/ME will increase too. Now, the time is right…let’s convert that newfound recognition into some more funding and an NIH home!” Dennis Mangan

The IOM report is changing perceptions about ME/CFS

The IOM report is changing perceptions about ME/CFS

In a recent interview Dennis asserted that success will come for ME/CFS when it moves into a Institute and gets a real home. The Solve ME/CFS Initiative’s Research Chief, Suzanne Vernon, has apparently been saying that for some time.

Now the Solve ME/CFS Initiative is moving aggressively to take advantage of the opportunity for change the IOM report has opened up.

Big Briefing

“The briefing…. is intended to further the IOM report momentum and turn the report into action, particularly by urging additional federal research funding.” Solve ME/CFS Initiative

They’re putting on the kind of event only the Solve ME/CFS Initiative can, and it’s great to see them embracing this opportunity. On March 25th, they’re holding a briefing for the media, congressional leaders and executive branch decision-makers in Washington, D.C.

change

The next step is real change. The Solve ME/CFS Initiative’s briefing is designed to inform those with the power to do that.

On the dais will be actress Morgan Fairchild (a former patient (who knew?)), former IOM Chair and now fervent ME/CFS advocate, Dr. Ellen Clayton, and Carol Head, President of the SolveME/CFS Initiative.

The space for the event is filled up, but you can watch the webcast by registering here and learn more about the event here. I’m dying to see who shows up.

They’re also asking patients, beforehand, to answer the question, “if you now were well, what would you do tomorrow?” They’re going to use the answers in a slide show at the event.  You can find a link to the survey here.

Tasha’s Story

“This disease is a poster-child for how language can get in the way,” Dr. Ellen Clayton

The buzz from the IOM is still reverberating throughout the media. The latest news piece to come forth  “Chronic fatigue syndrome gets new name, enhanced recognition” is one of the best. It describes how an athletic Tasha Keleman got sick twenty years ago while in Angola and never recovered. Each story like this focusing on a formerly active and healthy person pins a dagger in the heart of the idea that ME/CFS patients are malingerers. This is the media – presenting moving stories that will stick in the public’s consciousness – at its best.

(Tasha’s story also brings to mind the foreign traveller subset for whom pathogen exposure probably plays a big role. From Tasha to Mary Dimmock’s son to former journalist John Falk to Anne Ortegren, a cadre of ME/CFS patients got ill during or not long after an international trip.)

Among other things we find out this disease would have been called if you were transported back to 1750. (You’ll never guess…)

Moving the Field Forward: P2P Report Is Next

The IOM report is working. It’s bringing new recognition to this disease.

Next up is the release of the Pathways to Prevention (P2P) report on April 14th. That report, which was designed to uncover gaps in research and treatment, is more comprehensive and will feature many more recommendations.

Next building block - the Pathways to Prevention Report in one month

Next building block – the Pathways to Prevention Report in one month

It probably won’t have the cachet of an IOM report – the P2P process has been going for just a few years –  but it’s a federally financed report that was produced entirely by people outside the field.  That will give it a weight all its own.

Plus it’s got a great agenda:

“The goal of the Pathways to Prevention (P2P) program is to host workshops that identify research gaps in a selected scientific area, identify methodological and scientific weaknesses in that scientific area, suggest research needs, and move the field forward through an unbiased, evidence-based assessment of a complex public health issue.”

It will give us an opportunity to build on the momentum the IOM report has produced.

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