#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.
Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or facet) of ME and explore it more in depth. This month we are focusing on temperature dysregulation- heat and cold intolerance. It is surprising how difficult this symptom can be to manage until you experience it.