This Week at SMCI: Big news in the UK and US—and we need your help!
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London Tribunal Orders Release of PACE Trial Data

On Tuesday, August 16, the First-Tier Tribunal in London rejected an appeal by Queen Mary University of London, ordering the release of PACE trial data. SMCI and patients have long fought to retract and revisit the results of the PACE trial, which draws the conclusion that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) are the most effective treatments for myalgic encephalomyelitis. For more on this story, continue to our website.

AHRQ Reassesses CBT and GET Conclusions

In 2014, the Agency for Healthcare Research and Quality (AHRQ) published evidence report #219, which reported favorable results for CBT and GET. However, this report included studies, like the PACE Trial, that had serious flaws in protocol and definition. Recently, following successful advocacy efforts by Mary Dimmock and Jennie Spotilla, AHRQ issued an addendum downgrading its previous conclusions about the effectiveness of GET and CBT. Read a detailed analysis of this major victory at OccupyME.net.  

Urgent Request—Please Help

We need photos of patients at their worst for an upcoming disease awareness campaign. We want to avoid the standard photos of patients in bed. We need powerful images that evoke strong emotions: photos from the hospital, photos in wheelchairs—photos that illustrate how truly devastating this disease can be.

Photos must be high resolution (300 dpi or higher) and submitted by Tuesday, August 23. To submit your photo, email it to Emily Taylor at ETaylor@SolveCFS.org.

Nancy Lee Passes CFSAC Torch 

Late last week, the director of the Office on Women’s Health, Nancy Lee, announced she would be leaving government service. Ms. Lee, who served as the designated federal official for the Chronic Fatigue Syndrome Advisory Committee (CFSAC) since 2011, announced she will be transitioning the CFSAC designated federal official position to her successor, Gustavo Seinos, public health advisor at the Office of Women’s Health. As the director of the Office on Women’s Health, Ms. Lee focused on the Affordable Care Act, women’s preventative services, and violence against women.