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The National Institute for Health and Care Excellence (NICE) released a statement on 29 October 2021 to announce finally the publication of the paused, updated guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Though it would be easy to issue facile and popular soundbites and make positive noise about these guidelines and how they will change the lives of people with ME - Invest in ME Research believes that it may be more prudent to inject realism to the discussion – based on experiences from years of consistent campaigning to build a better future for those affected by this disease.
This charity analysed the draft guidelines in December 2020, returned comments and proposals to NICE, and abided by the standard protocols described by NICE for formulating guidelines.
Since August, when the guidelines were paused, there has followed months of secret discussions with preferred groups, breaches of NICE's guidelines development rules and regulations, perceived caving in to pressure from some establishment influences, and selection of a minority of compliant “patient representative groups” to attend an illicit roundtable meeting - that ultimately achieved nothing of consequence other than delay.
All held away from any scrutiny by the vast majority of registered stakeholders and from all people with ME and their families.
The NICE guidelines process became an omnishambles.
Following the guidelines publication we have commented - read our statement here -
Far from ensuring an end to the blight on their lives from decades of mistreatment, the future for people with ME still, tragically, remains uncertain following the publication of these guidelines – and lies in the hands of others and their interpretation or implementation of these guidelines.
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