Trial By Error: NICE Liberates New ME/CFS Guideline After Two-Month Hijacking Nightmare

By David Tuller, DrPH

After much drama, the National Institute for Health and Care Excellence (NICE) has finally liberated its hijacked ME/CFS clinical guideline. As many know, in August the agency abruptly called off the planned publication of this new document, which was developed over four years. This decision occurred in the wake of fierce objections from members and allies of the graded exercise therapy/cognitive behavior therapy (GET/CBT) ideological brigades, those who now find themselves on the losing side of a paradigm shift.

In reviewing the relevant research, NICE assessed the quality of the main evidence for the effectiveness of GET and CBT for ME/CFS as of either “very low or merely “low quality. In contrast to NICE’s 2007 guidance for what it then called CFS/ME, the new version recommends against psychological and behavioral interventions positioned as curative rather than simply supportive, as well as against interventions based on the theories that patients’ symptoms were perpetuated by deconditioning and/or faulty illness beliefs.

Enabled by NICE’s previous guideline, many health care professionals have profited for years from their purported expertise in this purportedly “evidence-based” therapeutic strategy. Now the agency has changed course and determined this approach to be without merit, leaving these professionals in a bit of a lurch. As Brian Hughes, a psychology professor at the National University of Ireland, Galway, has noted, the history of this field has represented the triumph of “eminence-based over “evidence-based medicine. That era is hopefully ending.

Before and after the delay of the August publication date, some of those with reputational and other interests in maintaining the status quo expressed their discontent with the proposed new NICE guideline in blustery and embarrassing public statements. NICE followed up the publication delay with an announcement that it would hold a “round-table discussion in October in order to allow various parties to air their concerns. That event, which occurred on Monday, was itself a source of much controversy because it represented a departure from NICE’s usual publication processes, among other issues.

Despite the anticipation of fireworks, the roundtable appears to have been rather anti-climactic and largely congenial, according to published comments from participants, with broad support for the version of the guideline produced by the appointed committee. Opponents of the guideline apparently failed to make any convincing arguments for their position. On Thursday, the agency made known that it was planning to publish the document today, as it did. With that, NICE dealt a severe blow to the authority and credibility of the cabal of medical grandees who concocted and promoted the GET/CBT paradigm for this illness in the first place, starting three decades ago.


So…NICE’s about-face is good news in a field where there often isn’t any. This event is also occurring six years to the week since Virology Blog published my 15,000-word investigation of the PACE trial. At that time, an authoritative repudiation of all the evidence for GET and CBT from a major UK agency would have been inconceivable.

But the two-month delay has been excruciating for the patient community. And no one should view publication of this improved guideline as a panacea or as something that will immediately improve the lives of patients, much less those who have already suffered for years under the prevailing but anti-scientific medical attitudes and beliefs, as a regular Virology Blog commenter (“Lady Shambles”) recently explained in response to a post.

Many others also argue that the new guideline will not prevent the same potentially harmful interventions from being renamed and rebranded in the guise of “supportive rather than curative care. Invest in ME, which supports biomedical research, today issued a particularly scorching response to NICE about this and other issues raised by publication of the guideline.

It is hard to dispute the validity of many concerns raised by critics, including the tally of the damage caused by long-standing policies. Like any clinical guideline, this one is open to abuse by health care professionals who choose to ignore or misinterpret or mis-apply its recommendations. Nonetheless, as another patient noted on Facebook, the publication is a way to “bank some of the progress that has been made in correcting the scientific narrative, and can serve as an impetus for seeking related changes in medical practice and research.

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