#MEAction has just launched a major new petition to get the US Department of Health and Human Services (HHS) to throw its considerable weight behind calls to The Lancet to have the notorious PACE trial independently re-analysed.
The petition also asks the HHS to take immediate steps to protect ME/CFS patients both in the US and overseas. Patients are currently under threat both from internationally influential US government-agency clinical guidelines and an important 2014 evidence review that recommend cognitive behavioral therapy (CBT) and graded exercise therapy (GET) as effective treatments for the disease.
These recommendations are based largely on PACE – by far the biggest study ever conducted in CFS – and on other studies that use the discredited and overly-broad Oxford diagnostic criteria.
The petition asks for a revision of the 2014 evidence review by the AHRQ (Agency for Healthcare Research and Quality, part of HHS): the review can be used in any country’s clinical guidelines to promote CBT and GET. The petition also calls for all treatment recommendations based on PACE and the Oxford studies to be removed from US government medical education material.
The petition will add force to a joint letter from twelve ME/CFS organisations, including #MEAction, making the same requests.
An earlier #MEAction petition to have misleading claims in PACE retracted gained a record-breaking 10,000 signatures in 16 days and will soon be delivered. The new petition is the latest, crucial step in using our community’s strength in numbers to stop the bad science of PACE and of similar studies from harming patients.
So sign and share the petition now — and let’s get this roadblock to good treatment out of the way.
Press Release: Advocates Urge Administration to Reinstate Long COVID Advisory Committee
March 6, 2025
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Press Contact: #MEAction: [email protected] Patient & Expert Voices Must Be Heard: Advocates Urge Administration to Reinstate Long COVID Advisory Committee #MEAction and the Patient-Led Research Collaborative – leading organizations advocating for people with Long
4 thoughts on “Petition: Investigate PACE, remove CBT and GET from treatment guidelines”
In the UK I have been using “National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome” (http://annals.org/article.aspx?articleid=2322804) as an argument against adoption of CBT and GET as primary treatments for ME/CFS.
You may realise that the National Insitute of Health and Care Excellence (NICE) recommend both for patients with mild and moderate symptoms and CBT for severe patients. It seems to me that having this recommendation (below) in this report is very useful:
“Existing treatment studies examining counseling and behavior therapies or graded exercise therapy demonstrate measureable improvements but may not yield improvements in quality of life (QoL). Therefore, these interventions are not a primary treatment strategy and should be used only as a component of multimodal therapy.”
Not that this should interfere with your petition, but I thought it was worth mentioning for others in the UK who might also find it of use.
Good luck with the campaign.
Russ
Investigate PACE, remove CBT and GET from treatment guidelines.
Investigate PACE, remove CBT and GET from treatment guidelines
exhertion causes severe payback . Abolish Pace and Get. I have been severely bedridden a number of times doing didn’t get me better not doing did.
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