By David Tuller, DrPH
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On October 20th, the British Association for CFS/ME issued a document titled â€œPosition Paper on the management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.â€ 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.
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 â€œposition paperâ€ might more aptly be called a â€œreposition paper.â€
Founded in 2009, BACME describes itself as â€œa multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with CFS/ME.â€ 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 â€œbodily distress syndrome.â€
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.
Why is BACME still called BACME?
While the associationâ€™s name refers to CFS/ME, the associationâ€™s position paper discusses an entity now being called ME/CFS. The discordance between the associationâ€™s name and the revised moniker for the disease in which it claims expertise is noteworthyâ€”it suggests that BACME is playing catch-up. It leaves the impression that BACME is, well, confused about what to doâ€”perhaps even struggling with some existential angst.
Before addressing the statement itself, this point should be noted: According to the GET/CBT paradigm, patients are suffering from unhelpful illness beliefs, which lead to sedentary behavior and subsequent deconditioning, which further leads to a downward cycle of ever-worsening symptoms. GET seeks to break this cycle through a program of increasing activity. The form of CBT outlined in PACE–let’s call it PACE-CBT–seeks to break the cycle by alleviating patients of their unhelpful illness beliefs and thus encouraging them to engage in more activity.
This theory is unproven and unprovable. Furthermore, the PACE trial and other studies that have purported to demonstrate the effectiveness of the two favored interventions are riddled with unacceptable flaws. With their own research, the GET/CBT ideological brigades have discredited their own theories, even though they refuse to admit it.
Judging from the BACME position paper, these investigators now seem to fear that their paradigm and its hypothetical underpinnings, which presume the absence of organic dysfunction, are on life support. That could be why the organization now states that it “fully supports research into the biological causes and mechanisms of the illness.”
It could also explain why the position paper declares the following:
BACME does not support the deconditioning model of ME/CFS as a primary cause for the conditionâ€¦BACME supports grading activity strategies when delivered by an ME/CFS specialist clinician to make increases and improvements in physical, cognitive and emotional function from an identified stable baseline. BACME does not support inflexible Graded Exercise Therapy (GET) built on a primary deconditioning model. A deconditioning based approach would involve an inflexible, structured approach where regular increases in activity are encouraged regardless of how the patient is responding.
BACME supports the use of Cognitive Behavioural Therapy (CBT) strategies and other psychological interventions with the aim of developing management strategies delivered by a specialist ME/CFS clinician who has a good understanding of ME/CFS. BACME does not support the use of inflexible CBT programmes delivered by practitioners who do not have a good understanding of the biological aspects of ME/CFS.
BACME’s untenable position
Ok, then. Where to begin?
The deconditioning/unhelpful beliefs model is at the core of both interventionsâ€”the two different approaches represent two different routes to getting people back to activity to reverse the presumed deconditioning. If deconditioning is not the problem, GET is not the answer. If unhelpful beliefs leading to sedentary behavior and subsequent deconditioning are not the problem, PACE-CBT is not the answer. The proposed treatments no longer have any legitimate rationale.
Instead of acknowledging this, the BACME statement inveighs against inflexibility in both GET and CBT. Yet inflexibilityâ€”not flexibility–was a hallmark of the GET and CBT interventions formerly championed by BACME. When did the smart people at BACME change their minds, and why? That would be helpful to know.
PACE and related GET/CBT studies have not investigated flexible approaches of the kind described in the BACME position paper. If BACME now opposes inflexible therapies like GET and PACE-CBT, it should clearly acknowledge that such studies are irrelevant. Since these treatments depend on their inflexibility for their presumed success in getting people re-engaged in activities, the research cannot reasonably be cited as evidence for the more flexible interventions that now pass muster with BACME.
The position paper argues that only â€œspecialist ME/CFS cliniciansâ€ who harbor â€œa good understanding of the biological aspects of ME/CFS” are qualified to deliver treatments to ME/CFS patients. But who are these clinicians? Certainly not the good folks at BACME, who had previously endorsed the inflexible versions of GET and CBT they now dismiss.
In a way, BACME has placed itself in an untenable position. It has now criticized the approach it once cheered without acknowledging its own complicity in promoting that approach in the first place. It is also unclear what exactly the organization is proposing as appropriate interventions. As it is, there are no evidence-based treatments. So what helpful interventions can BACME members offer ME/CFS patients, given the organizationâ€™s history of backing treatments it now disavows?
Here’s the new BACME strategy:
We support the continuing development of specialist multi-disciplinary ME/CFS services and specialist clinicians to guide, support and advise patients towards optimal health, wellbeing, and recovery. This is a complex illness but given prompt specialised intervention we expect improved quality of life, understanding of living with the illness, and progress for each patient.
For years, the GET/CBT ideological brigades have declared that patients get better and achieve “recovery” with their interventions. These statements have proven to be false. Now BACME, having discarded its past, is again dangling evidence-free hopes of “progress for each patient” and “recovery” from what it refers to as “prompt specialised intervention.”
Presumably BACME members deem themselves capable of providing this specialized intervention. Judging from this incoherent position paper, they don’t know what they’re talking about.