As we enter the holidays we have a positive development to report coming out of yesterday’s ME/CFS stakeholder call with the U.S. Centers for Disease Control and Prevention (CDC). CDC has announced that it will not publish a systematic evidence review of ME/CFS treatments by the Oregon Health Science University Evidence-based Practice Center (EPC) in an academic journal. #MEAction supports this appropriate decision by CDC.
#MEAction had raised multiple concerns with the draft EPC review, and over seven thousand people across the ME community co-signed our public comment, which stated that the EPC review was fundamentally flawed and strongly recommended that it not be published.
CDC Chronic Viral Diseases Branch Chief Dr. Elizabeth Unger also stated in her program updates that “In the interest of transparency, we will be posting the final report, comments and responses on our ME/CFS website.”
During the call, #MEAction advocates asked Dr. Unger for CDC to hold a community meeting to dialogue about how the EPC review information could be shared on the website in an appropriate context to ensure there is no confusion for healthcare providers or harm to patients. Dr. Unger replied that CDC would consider that request.
#MEAction has written a follow-up letter to Dr. Unger underscoring the importance of holding a public community meeting. If the CDC ME/CFS program is unable to organize a meeting themselves, #MEAction will organize a community meeting and invite CDC representatives to participate as panelists.
We will update the community on this important issue and communicate news as it becomes available. Thank you for your continued support of #MEAction’s federal agency advocacy efforts. Progress would not happen without you.
5 thoughts on “CDC decides not to publish flawed ME/CFS treatments review!”
I’m cheering for ME action staff and for all of us out here in ME/cfs land.! Thank you for all the great work you do to engage with federal agencies. I support you financially and emotionally.❤️❤️❤️
Hope you have a wonderful holiday season and get some much-needed R&R!🎄🕎🎆🎇❣️
It’s good that ‘technically’ this additional garbage report won’t be ‘officially endorsed’ by the CDC. Thanks for pushing for that. After that, it’s bad news:
ALL of this time, money and energy (still ongoing) could and should have been spent on LEGITIMATE MEDICAL RESEARCH into the causes of ME in order to develop LEGITIMATE TREATMENTS and hopefully CURES.
EVERY bit of hundreds of thousands of hours around the world spent discussing, researching, responding to, etc… decades of garbage, assaults, misinformation campaigns that are aggressively slanderous have just continued to degrade people with ME physically and suck up more time and lives while people in charge of our public funding just carry on spending our money on other things and we lose more time while suffering and getting more sick
These doctors who continue to insist upon it are CRIMINALS. The public agencies–who know it is criminal and participate–are by definition ALSO CRIMINALS. We need to stop trying to talk with, negotiate with, educate and/or beg them and instead sue the living crap out of them until they have no choice but to confess and hope they are not also prosecuted by the DOJ for decades of crimes. Forget the rest. Lawyers. Lawyers. Lawyers. Everything else is a joke to them until they are served by the right lawyer
Unger will “consider” adding context when insisting on posting a complete crap report? Really sick. DEMAND it under threat of lawsuit for continued harm to millions of patients: enough is enough And we want to word the CONTEXT also.
Of course there is no proper evidence. They have failed miserably *and purposefully* and haven’t even gotten a code to count ME patients or settled on a proper definition. They continue to allow ‘studies’ to make claims under a banner of “chronic fatigue” cures or “chronic fatigue syndrome” cures when the subjects may (or may not even) meet the junk Fukada criteria which is most likely people who need medical help of some description but do not have ME, so are magically cured by the ridiculous study ‘treatments’ and are not harmed by exercise (because they don’t have ME).
How many more wasted lives before people focus on holding these people accountable and speak up directly? Yes, you should try to work with people but they don’t give a flying F about doing the right thing, correcting the harm, or changing course. They care about getting paid and carrying on and deferring us. That’s it. Wake up. Really, literally, Wake up.
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