In advance of next week’s CDC ME/CFS Stakeholder Engagement and Communication (SEC) call, #MEAction has sent a letter to Chronic Viral Diseases Branch Chief Dr. Elizabeth Unger requesting her to clearly and directly address our four key objections to publishing a flawed evidence review of ME/CFS treatments that CDC commissioned.
The review wrongly concludes that GET and CBT are safe and effective treatments for people living with ME/CFS, which will mislead doctors and harm patients. Ignoring stakeholders’ detailed and repeated warnings about this flawed report would be the height of irresponsibility on the part of the CDC. Its publication will move the field backwards and will further entrench the definitional confusion around ME/CFS that has long imperiled the field.
Instead the CDC should be building upon the good work it has done in recent years to demystify the condition following its adoption of the IOM diagnostic criteria and the updating of its medical education materials.
In August, #MEAction submitted a public comment of over 40 pages laying out in detail all the flaws in the draft systematic evidence review of ME/CFS treatments (read the executive summary). We received 7,209 co-signs from across the ME community supporting our call for CDC to stop this flawed review from being published.
In October, the UK’s National Institute for Health and Care Excellence (NICE) published its own systematic evidence review on ME/CFS treatments. Their findings directly contradict those of the CDC review. Based on this more accurate review of the evidence, NICE updated its treatment guidelines to recognize that GET causes significant harm to people with ME/CFS, and that CBT is not curative.
If Dr. Unger does not want to do serious damage to the reputation and credibility of the CDC’s ME/CFS program, she needs to stop ignoring stakeholders’ warnings about the problems with this evidence review. At the Thursday, December 16th SEC call, we need to hear clear answers to #MEAction’s 4 overarching objections to publishing this flawed review:
- The review’s conclusions will misinform doctors and harm people with ME/CFS.
- The review’s conclusions represent a reversal from previous CDC commitments to base clinical guidance on IOM diagnostic criteria.
- Recent systematic reviews contradict the review’s conclusions and highlight the shortcomings in its approach.
- Dr. Unger has stated that CDC can choose not to publish the review. CDC should exercise that option now.
3 thoughts on “CDC must act now to stop flawed review of ME/CFS treatments”
I’m sure they would never even consider GET or CBT for patients with Long Covid. Why do we have a lower profile, and less significance? Because we don’t all know a virus caused our illness? Or because millions of us are still missing.
The injustice is real.
Thank you to everyone involved in compiling this document.
Speaking of CDC, is MEAction lobbying hard for a new NIH Director that understands that ME is an urgent public health crisis and that will appropriately fund research?
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