The National Institute for Health and Care Excellence (NICE) is in the process of updating its guideline for Myalgic Encephalomyelitis by October 2020. #MEAction UK has issued a response to the second draft scope for the ME/CFS Guideline.
The scope is a document which will provide the framework for the new guidelines; providing feedback about the scope is one of the best ways in which stakeholders can influence those guidelines.
Now is our opportunity to shape how NICE presents the disease to the medical community.
We are fighting hard to move away from the current false psychological framing of ME focused on harmful prescriptions of exercise and talk therapy to reflect the accurate reality of ME as a multisystem condition whose hallmark feature is post-exertional malaise, not fatigue, in response to physical and cognitive exertion. Our response urges NICE to refer to the CCC and ICC for a complete clinical picture.
Building on our initial analysis of the scope, we have addressed in much more detail the inadequacy of this document.
[maxbutton id=”17″ url=”http://meaction.net/wp-content/uploads/2015/05/NICE-Final-Comments-Form-MEAction-UK.doc-1.pdf” text=”Read #MEAction UK’s Response” ]
Today #MEAction joins the community in mourning the loss of Dr. Ronald G. Tompkins, MD, ScD, who passed away this week. Ron Tompkins was a clinician, clinical researcher, and friend and ally to people with ME. He was the Sumner M. Redstone Professor of Surgery at Harvard Medical School, Founding Director of the Center for