Trial By Error: The British Association for CFS/ME Switches Gears

By David Tuller, DrPH

*October is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism and the university’s Center for Global Public Health. If you would like to support the project, here’s the place: https://crowdfund.berkeley.edu/project/22602

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.

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 condition…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.

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BACME’s untenable position

Ok, then. Where to begin?

The deconditioning/unhelpful beliefs model is at the core of both interventions—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 inflexibility—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 “specialist ME/CFS clinicians” who harbor “a 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 organization’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.

Comments on this entry are closed.

  • CT 27 October 2020, 3:50 am

    Given that BACME are now saying that they don’t support inflexible CBT delivered by practitioners who lack understanding of the biological aspects of the disease, then presumably they can’t possibly support the inclusion of ME/CFS in the ‘MUS’ arm of the IAPT programme? If that’s the case, then why didn’t they say so in their position statement?
    Why haven’t they demanded that ME/CFS is removed from the IAPT programme that describes ME/CFS as a ‘somatization disorder’ with the ICD-10 F45.0 code, i.e. a mental health disorder, rather than under ICD-10 G93.3, a disease/disorder of the nervous system, as classified by the WHO?
    If they support specialist multi-disciplinary ME/CFS services, then why aren’t they protesting against them being closed and against patients being redirected to ‘MUS’ services? What are they doing to make sure that these changes are reversed or, better still, don’t happen in the first place?
    Why do they appear so half-hearted? Is it because they’re not suffering themselves? Or is it because they daren’t offend/upset the medical hierarchy?

    Gutless/pathetic/feeble…..what word best describes this organization? Why should anyone listen to them?

  • CT 27 October 2020, 4:20 am

    My previous comment seems to have disappeared into the ether, but the gist of it was:
    Given their new position, how can BACME possibly support the inclusion of ME/CFS patients in the MUS arm of IAPT? If they don’t, then why don’t they make that clear and try to prevent it from happening?

  • Lady Shambles 27 October 2020, 8:46 am

    Nicely argued blog. Thank you.

    I think most bases have been covered but a few minor, and personal, observations might be:

    i) are there really any ‘smart’ people at BACME, their whole existence to date rather disproves this notion, though I guess it might be wryly rhetorical on David’s part to suggest this curious possibility?

    ii)’Specialised intervention’ prompt or otherwise, provided by anyone with association to BACME (and the BPS paradigm in general) can’t possibly provide ‘understanding of living with the illness’ because they haven’t the first clue what the illness is in the first instance. That they have shifted their position because of political forces against them illustrates that they are nothing more than a quango and have nothing to do with any understanding of the biomedical nature of the disease. They can’t even use the right criteria for heaven’s sake! Obscene from the point of view of a patient who *really* knows what it’s like to live with this illness. Which leads me to:

    iii) So BACME might be “struggling with some existential angst” eh? Well I suggest they try living with genuine existential angst ..the not knowing how much longer a body, undergoing the assault of this disease over multiple decades, can continue to live. And when I say ‘live’ , I mean ‘live’, in the ‘body and soul together’ sense; in the ‘breathing and moving sense; in the ‘not being 6 feet under’ sense. If David is correct and their quango is in its last throes (I most certainly hope so, but it’s only one amongst many) it’s nothing compared to the actual demise of so many people with this disease, either through the process of that disease or by their own hand. BACME’s (and others) chicanery have left us to rot with neither care nor ‘care’. That’s ‘existential angst’ …. that’s the real-deal ‘how much longer can I suffer this?’ angst.

    Please keep up this level of scrutiny. We need this…

  • CT 27 October 2020, 9:41 am

    They may be clueless as to how much ME patients have suffered, but BACME members could start to put things right TODAY by denouncing IAPT for ME/CFS. It must be the antithesis of what they now advocate. Do they have the guts to? I doubt it.

  • Dionysus 27 October 2020, 9:54 am

    When I first read the BACME position paper, I have to admit that I was far too forgiving and thought that they may have embarked on a road to redemption.
    I failed to pick up on the basic scientific mistakes, the absence of logic and the disjointed thinking, that, after reading this blog, is now painfully apparent.
    Well done David for bringing such sharp focus to bear on these flaws and for helping us all to realise just how badly these people are (once again) letting patients down.

  • lucie webb 27 October 2020, 12:27 pm

    Thank you for your measured response, David. It is only you who is preventing me from jumping in my chariot and firing off arrows Boudicca-Style. Mrs Wesseley was on the BBC Radio 4 programme Today, last week, as a member of a 2 expert panel on Covid and there to answer questions from the listeners. When the author, Michael Rosen, called in with a question as to why so many people were suffering from a range of neurological symptoms, post-covid, Mrs Wesseley kept schtum and allowed the other expert to answer. Her silence spoke volumes. Michael Rosen has written about his hospitalisation with Covid.

  • Alicia Butcher Ehrhardt, PhD 27 October 2020, 2:26 pm

    The tap dancing is exquisitely painful to watch, and it seems saving face is far more important than actually serving people who have a major disease.

    I wonder if any of these will actually come out strongly on ‘our’ side, and state that they were wrong before. I would even allow them to blame those who published flawed research for leading them astray.

  • Ann 30 October 2020, 5:06 am

    Thank you again David. I think BACME are still in the wrong gear. Time they stopped driving.

  • Steve Hawkins 31 October 2020, 2:47 pm

    These people should not be allowed to get off so lightly, with just a change of wording that enables them to go on peddling their wares as before.
    Their self-professed ‘expertise’ and expert lobbying have resulted in the actual, long term (decades long for many), psychological torture and character assassination of the already seriously, chronically ill. They created a living Hell for desperately sick patients, that led to unimaginable mental and physical suffering, and to the deaths and suicides of substantial, but largely unacknowledged numbers.

    This was/is a regime of pure evil in practice even if not in intent. Thousands if not millions of person years of useful, active, life, have been lost while research into the real causes and mechanisms of the disease was brought to a near standstill on the advice of these self-appointed ‘experts’ who acted more like petty dictators over both patients and the wider medical community.

    There needs to be a full inquiry/inquest into how it was possible for a small group of determined fanatics to dominate and take ownership of any diseases and their patients, that have yet to be fully understood through proper scientific study, and, instead of such study, to insist on providing lifelong brainwashing, based on the flimsiest of evidence, and on the most simplistic of hypotheses.

    When are we going to see any acknowledgement from these ‘psychologists’ that they have the slightest understanding of the mental torture they have been wilfully, and often seemingly sadistically, inflicting?

  • PDH 2 November 2020, 4:02 pm

    First a disclaimer that I am biased based on having a son who suffered with ME/CFS for 6-7 years and has been “disease free” for 7 years now. I won’t go into all the details, but as a Physical Therapist and student of Neuroscience what worked for him will not work for everyone. I can speak to the massive impact this has on an individual and the toll it takes on them and their support structure. It is brutal and I have huge admiration for those who suffer and yet keep going as best they can!

    I spent a good deal of time researching and participating in forums for several years and became well acquainted with the UKs approach to this disease. I was quite disturbed that fellow Physiotherapists were participating in the dogmatic CBT and Graded Exercise Approach, although I am sure not all were as rigid as the cases that came to light.

    To me this “reversal” to an extent is because the anecdotal experience and honestly the empirical science did not support the approach being applied. I find it encouraging that they are recognizing that this is an area of medicine in which one needs to respect the processes in play and in particular the neuro-immune and neuro-endocrine pathophysiology as best as can be understood.

    Did my son benefit from CBT and Graded Activity progression once he began to turn the corner? Absolutely. It took him nearly 3 years to do so. I do believe that ME/CFS is at its core an over-reactive Neuro Protective response but to claim that CBT can “cure” it (or any psychological intervention alone), is to say that the “tail can wag the dog”. There has been a lot of attention being given to Neuroplastic approaches to ME/CFS, PTSD, Mast Cell Activation, Chronic Lyme, Chronic Pain, Fibromyalgia and more. It seems very important to eliminate other potential causes first, but if it behaves from a Neuro-Protective based manner, then strategies must align with that. “Shot gun” approaches don’t work. Needs to be much more focused, purposeful and personal. I for one am glad to see this come out!