As I posted last week, it finally appeared that the British medical establishment was about to turn an important corner on ME/CFS, as the National Institute for Health and Care Excellence (NICE) had drafted a new “guidance” that rescinded its previous, and harmful, recommendation for CBT and GET. The new document was scheduled for formal release last Wednesday. Then powerful, entrenched interests intervened and succeeded in obtaining an indefinite delay in publication of the final document. David Tuller and I have the full story in STAT. Here is the gist: 

Delay of British chronic fatigue syndrome guidelines is a setback for people with long Covid

Many in the ME/CFS community were eagerly awaiting the long-overdue update, which was developed by a carefully selected committee that included clinicians and patients. Instead, after protests from leading physicians organizations that prefer the status quo, NICE announced on Tuesday it was postponing publication of the new guidelines, which had been scheduled for Wednesday.

This move, which leaves in place the 2007 recommendations, represents a serious setback not only for people with ME/CFS but also for those experiencing what has been dubbed long Covid — the profound exhaustion, brain fog, dizziness and other symptoms that can continue for many months following a case of Covid-19.

The revision of the ME/CFS guidelines have been in the works since 2017, long before the Covid-19 pandemic, but it has taken on added significance because of the potential impact of the guidelines on clinical attitudes and approaches to the surge of people with long Covid, given the similarities of the two conditions. Many people with long Covid, like generations of those before them with ME/CFS, have reported that doctors, employers, insurers and others have wrongly dismissed their symptoms as psychosomatic.

 In an article published this past week in the journal PNAS, experts from Johns Hopkins, Harvard, and the Solve ME/CFS Initiative reviewed commonalities in the pathophysiological processes associated with ME/CFS and long Covid, noting that “understanding the molecular underpinnings of both PASC and ME/CFS may lead to the development of novel therapeutics.”

As the suspended revised guidelines make clear, the psychosomatic school is on the losing side of the scientific argument. Just as the new ME/CFS guidelines could help foster appropriate care for people with long Covid, the emerging wave of biomedical research into that condition may provide answers as well for the long-neglected community of people with ME/CFS.

In the meantime, it is essential that NICE publish its revised guideline with all deliberate speed.

You can read the full article here.