The British Association for CFS/ME (BACME) describes itself as ‘a multidisciplinary organisation for UK professionals who are involved in the delivery of clinically effective services for patients with ME/CFS.’ Membership is open to clinicians and researchers, including psychologists, medical doctors, managers, students, and physiotherapists. BACME provides resources, education, and professional development to its members, who primarily work within the network of locally-commissioned specialist ME/CFS clinics scattered around the country. As such, BACME has huge influence over how these clinics are run. BACME also has influence on the NICE guideline for ME/CFS, with members on the guideline Committee. In addition, BACME members have led or been involved with key research studies and clinical trials that form part of the guideline evidence base.
In October 2020, and in anticipation of the release of the updated NICE Guideline for ME/CFS in 2021, BACME released a Position Paper on the management of ME/CFS. The statement includes a refutation of the deconditioning model of ME/CFS, one of the founding pillars of the biopsychosocial (BPS) approach to understanding the illness and the primary justification for interventions such as graded exercise therapy (GET) and cognitive behavioural therapy (CBT). Despite this, BACME reaffirmed their commitment to CBT and support of ‘grading activity strategies’. No, me neither… The ME Association published a succinct and measured repsonse to the Position Paper, setting out their concerns.
Deconditioning out…dysregulation in
The BACME statement was likely timed to coincide and align with the release of the draft NICE Guideline for ME/CFS, published in November 2020. The expected publication date for the final guideline was later pushed back from 21 April 2021 to 18 August 2021. The draft guideline advises that patients should not be offered ‘any programme based on fixed incremental physical activity or exercise, for example graded exercise therapy or structured activity or exercise programmes that are based on deconditioning as the cause of ME/CFS.’ In addition, the use of CBT as a therapeutic intervention is downgraded to a supportive rather than curative role. The draft guideline instead recommends activity and energy management. This intervention does not assume that deconditioning is the cause of ME/CFS.
The BACME Position Paper states:
‘BACME does not support the deconditioning model of ME/CFS as a primary cause for the condition. It is recognised that deconditioning may be, for some, an additional complicating factor of living with any disabling chronic health condition.’
Of course, BACME has historically supported the deconditioning model for ME/CFS, so this is quite the reversal. Their philosophy has always been aligned with the biopsychosocial approach. Having said that, some of the NHS clinics have over recent years dropped the basic tenets of the BPS approach and gradually moved away from strict GET and/or CBT programmes and have implemented their own ‘treatment’ protocols, some of which focus on pacing and activity/energy/lifestyle management. The treatment/management plans offered varies considerably among clinics.
The BACME paper points to a new emphasis on ‘dysregulation’:
‘There is evolving evidence to indicate a dysregulation of multiple dynamic physiological systems in explaining the symptom picture seen in ME/CFS. Research has demonstrated changes in Immune System responses, Autonomic Nervous System function, Neuroendocrine pathways including the Hypothalamus-Pituitary-Adrenal axis along with cellular metabolic changes.’
In this context, dysregulation is used to refer to the myriad abnormalities and impairments that have been reported in ME/CFS. So far, such findings are disparate, in that together they haven’t yet led to identification of particular pathologies. The BACME statement points to their recognition of these findings, which are often seen by patients and biomedical researchers as evidence for the biological/organic nature of the illness. This, in itself, is a positive step, and could potentially benefit patients within the clinic, for example via better symptom management.
A ‘dysregulation model’ of ME/CFS
The Position Paper, however, is not simply an acknowledgement of the complexity of symptoms in ME/CFS. Though only one side of A4, the paper sets the tone for the coming years. There is a new emphasis on rehabilitation, and the concept of dysregulation is to form a core part of BACME’s understanding of and approach to managing ME/CFS:
‘BACME supports clinicians to underpin rehabilitative and therapeutic processes with a grounding in dysregulation principles.’
This is evidenced by the programme for the BACME’s annual conference in 2021, where one of the workshops was titled the ‘Dysregulation model - practical application, translating into practice, clinical approaches to rehabilitation’. (A workshop titled ‘Dysregulation vs Deconditioning - clinical approaches to rehabilitation’ appeared in the draft programme for the cancelled 2020 conference.)
The ‘dysregulation model’ seems to have been spearheaded by small number of BACME members — including Dr Vikki McKeever, a GP with special interest in ME/CFS — working in collaboration with Sue Pemberton of the Yorkshire Fatigue Clinic (YFC). Dr Pemberton, who is no longer a member of BACME, happens to be reasonably well respected by patients and has many years of experience working within NHS ME/CFS clinics. At the end of 2020, the YFC added to their website a document that summarises the dysregulation model of ME/CFS and their approach to therapy.
In essence, the model invokes a loss of homeostasis in ME/CFS patients, dysregulation of numerous bodily system — particularly the autonomic nervous system, the neuroendocrine system, and the immune system — and a breakdown in communications between the different systems. Individual symptoms are attributed to dysregulation of one or more of these systems; for example, a disrupted sleep cycle can be considered a symptom of hypothalamic-pituitary-adrenal axis dysfunction, and orthostatic intolerance can be attributed to autonomic nervous system dysfunction.
The document ends with a rather vague discussion about what can be done about this dysregulation. The interventions include lifestyle changes (such as re-regulating the body clock), energy management, minimising ‘immune activation’, and changes to diet. Such strategies will be familiar to most ME/CFS patients, and already form the basis of approaches in some of the NHS specialist clinics that have already moved away from GET and ME-CBT.
Assessment of the model
The dysregulation model aims to provide a theoretical framework for therapeutic interventions that have been tried and tested, but with unknown/unquantified success. The model attempts to bring together disparate research findings and clinical evidence of abnormalities and impairment in ME/CFS patients, while acknowledging that ‘there is no clearly understood pathway regarding the disorder’. The model acknowledges the huge number of symptoms seen in ME/CFS and claims not to directly relate them to deconditioning, fear avoidance, or false illness beliefs. The model goes hand-in-hand with a therapy approach based on rehabilitation and ‘re-regulation’.
Acknowledgement from clinicians that they are dealing with a multisystem illness with clear clinical abnormalities should be welcomed by patients. Likewise, patients will benefit from clinicians who are better educated about the breadth and severity of symptoms in ME/CFS, as well as those of overlapping/comorbid conditions.
Yet, despite casting off the most bombastic (and harmful) elements of the deconditioning model of ME/CFS, I do have several reservations about the dysregulation approach and its possible implementation in clinics.
Any therapeutic interventions to be rolled out in the clinic should be evidenced. Data collection within the clinics is notoriously shabby. If these strategies have helped patients, we should be able to see the evidence. For example, attempting to correct sleep reversal, shorten overall sleep duration, and avoid daytime napping are often advised, but it is not clear that these are appropriate strategies.
Is there an inherent assumption that patients can ‘re-regulate’? The narrative in the new model seems to be that with self-management and certain interventions patients can re-regulate their bodies on a path to rehabilitation (if not full recovery). The dysregulation is seen as reversible. This allows the narrative (myth) of expected recovery/rehabilitation to continue.
Is there a need for yet another vague model of this illness, given we know so little about its pathophysiology, and given the heterogeneity in patients’ symptoms and illness course? Is simply focusing on symptom management and support (where needed) not an option?
Tinkering around the edges
The revised NICE guideline for ME/CFS is likely to cause some disarray within the NHS specialist clinics, particularly those that have not transitioned to a more flexible and diversified approach. There have been calls for many years from patients and advocates for appropriate reforms and funding. The new guideline may provide some impetus for change — as might the demand for similar services for long-Covid patients — but it will be all too easy for the clinics and their staff to remain somewhat wedded to the old narratives.
I recently came across inclusion of the concept of dysregulation in a recently-revised pamphlet from the South West London and Surrey Chronic Fatigue Service. A section of text in the July 2018 version of the booklet read:
‘The increased fatigue that people with CFS experience usually leads them to take prolonged rest. This prolonged rest has physical consequences. Medical investigations show that there is no disease cause for these physical symptoms, they occur as a direct result of inactivity and prolonged rest.’
In the latest implementation of the booklet (July 2020), this section reads:
‘The increased fatigue that people with ME/CFS experience usually leads them to take prolonged rest. This prolonged rest has physical consequences. Medical investigations show that there is no disease cause for these physical symptoms. They are related to the dysregulation of several body systems in particular the autonomic nervous system, HPA axis and the immune system. Coping strategies such as prolonged rest and inactivity can inadvertently maintain the symptoms.’
It is simply not good enough for clinicians to pay lip service to the idea that ME/CFS is a serious multisystem illness without moving on from their harmful narratives and thoroughly debunked therapeutic approaches. Nothing less than a paradigm shift will suffice.
Finally, it is worth mentioning that there is no mention of dysregulation in the draft NICE guideline.
This blog post was edited on August 20 2021 to reflect that Dr Sue Pemberton is no longer a member of BACME.