Briefing on the Institute of Medicine report in Washington, D.C. --webcast March 25

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Denise

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oceiv said:
I hadn't heard this info before. I'd love to read about it. Where did you hear/read about the IOM briefing congress?
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My understanding is that there was a briefing that legislators (and/or staff) were invited to but few attended. I have not heard who the attendees were.
 
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Sasha

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Solve on FB said:
During the Q&A, Dr. Clayton points out that the IOM's job is done, having been called to create a report, which is completed. Through the process, she has become very endeared to our cause and is thrilled that SMCI has held the DC event to help move things forward.
This is a new beginning...
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Dr Ellen Clayton is my hero! She's gone from knowing nothing (I think) about our disease to becoming a major advocate for us. I was very impressed by what she said when she presented the IOM report. She's clearly thinking in advocacy terms.
 
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Anne

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A very poignant slide from Carol Head.
 

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Bob

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Call me sentimental but that was rather a sweet moment at the end of the video. It's nice to see relationships and networks forming out of this process.

All these people clearly care. All three speakers seemed to get quite emotional and choked up during their presentations. Dr Clayton was passionately banging her fists on the podium at one point.

And it was good to see various representatives in the audience: representatives of two members congress (only two, unfortunately); members of the research community (e.g. Ron Davis); CFSAC members; and someone from the Office of Women's Health.

But perhaps the best outcome is that Morgan Fairchild has arranged a meeting between the NIH/Fauci and Dr Clayton. This is where the advocacy needs to be focused, and also congress.
 
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Bob

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What we should be doing, as a community, is taking the IOM report to congress, and advocating for a yearly research budget dedicated to ME/SEID. This is what Nancy Klimas recommends. It's what's been done, successfully, for GWI. We should be shouting about this report and making a lot of noise, and getting as much leverage as we can out of it. We should be taking opportunities as they are presented to us, and using them to our best advantage. We're not going to get an opportunity like this for a while.

I think (going from memory) that Nancy Klimas also said that we should be lobbying the Department of Defence for funding for ME/CFS because so many veterans have ME/CFS, and the DoD have research funding available that is allocated to them yearly from congress, and they fund various types of research if it vaguely relates to service people in some way. (I think it's the DoD that she was talking about - I'll have to check my notes). Nancy Klimas gets a lot of her funding from the DoD and VA.
 
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Nielk

Nielk

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Clayton started off stating that the IOM process was started in response to. CFSAC recommendation to convene a workshop of stakeholders to work in criteria. She stopped at that. She didn't ginish the full recommendations - starting with the CCC.

If she was stating that this was in response of the recommendation, she should have read the recommendation in its entirety.
 
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Sasha

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Nielk said:
Clayton started off stating that the IOM process was started in response to. CFSAC recommendation to convene a workshop of stakeholders to work in criteria. She stopped at that. She didn't ginish the full recommendations - starting with the CCC.

If she was stating that this was in response of the recommendation, she should have read the recommendation in its entirety.
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She did in fact say that what CFSAC wanted wasn't what the funders commissioned IOM to produce, and she acknowledges that that has been a source of contention.

The IOM's job wasn't to do what CFSAC wanted - they weren't employed by CFSAC - but what their funders told them to do. I think it speaks highly of Dr Clayton's integrity that she made it clear that there was a mismatch there and that it has caused dissent. She didn't need to mention it at all, let alone read out the full list of CFSAC recommendations and indeed, a focus on that would have distracted from and undermined the advocacy that she was trying to do at the meeting.

I've watched so far Dr Clayton's presentation and Carol Head's, and I think that both of their presentations were spectacular advocacy for us.
 
Nielk

Nielk

Senior Member
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If she had true integrity she would have read the complete recommendation for those who were listening and weren't aware of the full recommendation.

Each panel member knew very well that they were acting against stakeholders wishes.
 
Kati

Kati

Patient in training
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5,497
Sasha said:
She did in fact say that what CFSAC wanted wasn't what the funders commissioned IOM to produce, and she acknowledges that that has been a source of contention.

The IOM's job wasn't to do what CFSAC wanted - they weren't employed by CFSAC - but what their funders told them to do. I think it speaks highly of Dr Clayton's integrity that she made it clear that there was a mismatch there and that it has caused dissent. She didn't need to mention it at all, let alone read out the full list of CFSAC recommendations and indeed, a focus on that would have distracted from and undermined the advocacy that she was trying to do at the meeting.

I've watched so far Dr Clayton's presentation and Carol Head's, and I think that both of their presentations were spectacular advocacy for us.
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Moreover Carol Head made sure to mention they didn't represent all patients.
 
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