On October 20th, the British Association for CFS/ME issued a document titled
“Position Paper on the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.” The timing of this document, in which the organization appears to contradict its previous stance on graded exercise therapy and cognitive behavior therapy, is worth noting. Two weeks from now,
the National Institute for Health and Care Excellence will release the draft of its revised clinical guidelines for ME/CFS.
Why has BACME decided, just before release of the NICE draft, to make this announcement, with zero explanation for the change? It seems likely or at least possible that members of the organization anticipate significant revisions from NICE and want to position themselves for a new environment. If they believed the new guidance would merely replicate the 2007 version and its recommendations for GET and CBT, they would presumably be less eager to repudiate interventions they once endorsed.
(The
ME Association,
Action For ME, and
Physios For ME have all issued statements about this position paper.)
Members of the GET/CBT ideological brigades, including the professionals involved with BACME, seem unsure of their footing as their treatment paradigm faces unprecedented challenges. Under the circumstances, this BACME “position paper” might more aptly be called a “reposition paper.”
Founded in 2009, BACME describes itself as
“a multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with CFS/ME.” After its formation, Esther Crawley, the University of Bristol’s methodologically and ethically challenged pediatrician and investigator, served as chair. (She was not yet a professor.) At a BACME conference two years ago, a key speaker was Professor Per Fink, the Danish psychiatrist
who has argued that all unexplained physical symptoms are essentially manifestations of an overarching psychiatric disorder called “bodily distress syndrome.”
In
a clinical guide for professionals working with CFS/ME patients that was still available as of last year, BACME made clear that its perspective adhered to the then-accepted approach associated with PACE:
It [the guide] does not replace specialist CBT and GET training (recommended by NICE and available at www.PACEtrial.org). It represents pragmatic recommendations from experienced clinicians to guide practice when seeing adults with CFS/ME, where specialist CFS/ME CBT and GET therapists are not available/appropriate. It is informed by these approaches.
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Why is BACME still called BACME?
While the association’s name refers to CFS/ME, the association’s position paper discusses an entity now being called ME/CFS. The discordance between the association’s name and the revised moniker for the disease in which it claims expertise is noteworthy—it suggests that BACME is playing catch-up. It leaves the impression that BACME is, well, confused about what to do—perhaps even struggling with some existential angst.
