Solve ME/CFS Initiative: Discovery Forum 2017: Presentation of Dr. Elizabeth Unger

Andy

Andy

Retired committee member
Solve ME/CFS Initiative’s 2nd Annual Discovery Forum, held on October 14th in Washington DC, brings together leaders from across industry, academia, federal agencies, and biotech companies to tackle the most pressing issues confronting ME/CFS today. This recording is the full presentation of Dr. Elizabeth Unger, Chief of the Chronic Viral Disease Branch of the Centers for Disease Control in Atlanta, Georgia.
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Still waiting for the CDC to update their "Resources for Healthcare Providers". It's been nearly a year of "Coming Soon".

I understand these things take time, but where is the CDC's sense of urgency?

Doctors in the US still widely don't know how to diagnose ME/CFS. After diagnosis, graded exercise and psychiatric interventions are still routinely prescribed.

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Eileen Holderman - In 3hour convo w Dr. Unger @CDCgov in Washington, DC, she expressed 2 me bewilderment @ advocate community outrage over Toolkit [touting GET+CBT] bc "CFIDS [now Solve (SMCI)] wrote it."
 
It was also some time ago that Action for ME supported the PACE Trial but that has not stopped it's portrayal as having the support of the largest charity in the field.
 
Webdog said:
Still waiting for the CDC to update their "Resources for Healthcare Providers". It's been nearly a year of "Coming Soon".

I understand these things take time, but where is the CDC's sense of urgency?

Doctors in the US still widely don't know how to diagnose ME/CFS. After diagnosis, graded exercise and psychiatric interventions are still routinely prescribed.

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Absolutely ridiculous, Unger has no shame if she turns up at conferences this year still saying website is being updated. As we say in Ireland a shoe in the proverbial is what she needs. The CDC are partly responsible for the mess we are in, one would think it's high time to clean it up ....grrrrr
 
James said:
It was also some time ago that Action for ME supported the PACE Trial but that has not stopped it's portrayal as having the support of the largest charity in the field.
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Besides the point. I asked when Solve were involved in writing in the CDC's Toolkit because 1. I don't know, and 2. It would provide context to the implied criticism of them.

From this blog, http://occupyme.net/2017/09/21/cdc-website-update/, Mary Dimmock reports that it was in existence in 2012,
..CDC did not remove the contentious CDC CFS Toolkit in spite of a June 2012 CFSAC recommendation to do so.
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so presumably this happened prior to that. So I'm now getting the context that it has been some time and quite a lot has changed between now and then.

While I can understand it, the apparent urge to condemn, seemingly, forever any organisation whose prior management took what we consider a decision or action that is against the best interests of PwME seems to me a huge waste of time and effort.
 
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