ME Association response to BACME Position Statement on the Management of ME/CFS

October 23, 2020

Russell Fleming, Content Manager, ME Association

BACME (The British Association for CFS/ME) is a group that comprises health professionals working in the hospital-based NHS referral services for ME/CFS and several patient representatives. The ME Association is not a member of BACME. 

The group's stated mission it to, “support health care professionals to develop and deliver clinically effective and holistically informed practice for children, young people and adults with ME/CFS and primary fatigue conditions.”

BACME issued a position statement on the management of ME/CFS earlier this week and the ME Association believes it is important that we comment upon it.

While the ME Association is prepared to give a cautious welcome to what appears to be a significant change to BACME's stance on both the causation and management of ME/CFS, we still have a number of concerns and questions.

The Biopsychosocial Model

The main change in position appears to relate to what is called the biopsychosocial (BPS) model of causation in ME/CFS – a theory that the ME Association has never supported. 

The BPS model proposes that physical deconditioning and the adoption of abnormal beliefs and behaviours are the reason for continuing disability and symptoms in ME/CFS.

It also supports the use of Cognitive Behavioural Therapy and/or Graded Exercise Therapy as the main form of treatments.

The BACME statement indicates that they are now viewing the causation and perpetuation of ME/CFS as involving, “a dysregulation of multiple dynamic physiological systems,” and they appear to have toned-down the use of these previously recommended treatments (see statement extracts at the bottom of this blog).

The New NICE Clinical Guideline

The ME Association questions whether it is more than coincidence that this statement should be forthcoming when we are awaiting a draft of the new NICE clinical guideline for ME/CFS. 

The BACME Position Statement

This draft, which will contain the NICE guideline committee’s provisional conclusions and recommendations on the diagnosis and management of ME/CFS, will be made available to stakeholders on 10th November for comment. Final publication of the clinical guideline is expected in April 2021.

The NICE guideline provides the framework for care and support in the NHS. Where the new guideline differs with this BACME statement, and to previous guidelines produced by BACME, we assume they will be updated as this group is comprised mainly of NHS clinical professionals.

The position statement on the management of ME/CFS was published on the BACME website on 20 October.

It contains information that the patient community might like to comment upon given that BACME aims to represent healthcare professionals involved in the delivery of care and support within the NHS and, in particular, the network of NHS ME/CFS Specialist Services that exists in England.

Concerns & Questions

Concerns and questions on the content of the BACME position statement that have already been raised by the ME Association include:

  • Reference to “best available clinically effective treatments” when none currently exist for ME/CFS.
  • “Graded activity strategies” – are they just another name for graded exercise therapy?
  • is BACME still recommending what might be termed ‘flexible graded exercise therapy'? If so, this ought to be made clear.
  • The lack of reference to Pacing which is a safe and effective management approach based on patient survey evidence and patient preference.
  • Reference to ‘rehabilitation’ in the context of ME/CFS – despite the included definition from the World Health Organisation.

Finally, far more clarification is required about the way in which BACME now regards activity and energy management, along with the use of GET and CBT, and how this will translate into practical patient management in the NHS hospital-based referral services for people with ME/CFS.

Extracts from the statement:

“ME/CFS is a serious and complex chronic multi system illness that can profoundly affect the lives of people who develop it.

“BACME fully supports research into the biological causes and mechanisms of the illness. 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.

The BACME Position Statement

“BACME supports clinicians to underpin rehabilitative and therapeutic processes with a grounding in dysregulation principles. 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.

“BACME believes that patients should have access to the best available clinically effective treatments, therapy and support with rehabilitation to relieve, reduce and manage symptoms where possible. This will allow patients to make informed choices as to how to manage the impact of ME/CFS on their quality of life and optimise the potential for recovery.

“BACME supports the delivery of flexible, person specific programmes that take into account the underlying biological processes.

“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.

“Rehabilitation is to be appropriately tailored to an individual’s needs and personal goals and provided within a holistic model. A flexible framework of monitoring and review is recommended and is best achieved by providing continuity of care.

“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…”

BACME Documents:

The ME Association

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