Standing strong – Global ME community is unified in firm support for the NICE 2021 ME/CFS guideline
WAMES has joined 56 leaders in the ME community from across the globe in writing a rapid response to the July 2023 article titled “Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis.”
The World ME Alliance is disappointed that the Journal of Neurology and Neurosurgery and Psychiatry (JNNP) has not published our rapid response to this article.
Instead, this article remains published, while rapid responses rebutting it are not. This is a major disservice to people with ME everywhere. Readers of this article, and especially professionals who support and care for people with ME, must understand the strength of opposition to these author’s controversial assertions.
this response reiterates the significance of advancing treatments that genuinely improve the lives of those affected by ME
In our rapid response, authors from over 24 countries firmly endorse NICE’s statement that they “reject entirely the conclusions drawn by the authors of this analysis, and in particular their conclusion that NICE has not followed international standards for guideline development which has led to guidance that could harm rather than help patients”. And call for “progress beyond outdated and repetitive arguments.”
While awaiting NICE’s forthcoming detailed response, this rapid response underscores the international ME community’s unity in support of the 2021 NICE guideline on “Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management.” By shedding light on the extensive backing of the ME community and underscoring the imperative for ongoing research, this response reiterates the significance of advancing treatments that genuinely improve the lives of those affected by ME.
