Action for M.E. statement on: The PACE trial and behavioural treatments for M.E.

On 29th August 2018 Action for ME published a statement explaining the charity’s role in the PACE trial and apologising for their role in contributing to the stigma and misunderstanding of ME.  Excerpts from the statement:

Sonya Chowdhury, our Chief Executive since September 2012, says:

‘By having a role on the Steering Committee and Management Group, there was
a de facto endorsement of the use of £5m of research funding to
focus on behavioural treatments. Neither I nor the current Board of
Trustees would agree to do this now, as reflected by our current
research strategy, the focus of which is collaborative biomedical
research.

‘I am sorry that the charity did not advocate for this considerable
level of funding to be invested in biomedical research instead. It was
never our intention to contribute to any stigma or misunderstanding
about the illness and I sincerely apologise to those who feel that, in
not speaking out sooner and more strongly, we have caused harm.

‘Our position on recommending treatment and management approaches for
M.E. is set out below and, over the coming months, we will review all
our printed and online information to reflect this. This is no small
task, but one that the team will prioritise and complete as quickly and
comprehensively as we can.

‘We will learn from our past mistakes. We will continue to provide
practical support to our Supporting Members and others with M.E., to
challenge the stigma and neglect they experience, and work with
professionals and policy-makers to transform the lives of children,
young people and adults with M.E. in the future.’

A summary of our position

Action for M.E. does not support any treatment approach:

• based on the deconditioning hypothesis
• in which patients’ legitimate concerns about the consequences of
  exercise are dismissed or ignored.

We fully support treatment approaches which:

• aim to reduce and stabilise symptoms before any appropriate increase
  in activity levels is attempted
• put the person with M.E./CFS in charge of the aims and goals of the
  overall management plan.

We would like to see:

• clarity from specialist NHS M.E./CFS services about the approaches
  they offer, and the theoretical basis behind them, to help patients make
  informed decisions about the treatments they are being offered
• health services and commissioners working directly with people
  affected by M.E. to develop patient-led services
• good-quality, independent evaluation of the programmes being offered
  by specialist NHS M.E./CFS services.’

The statement then goes on to clarify AfME’s position on Pacing.

In its guidance on therapy and symptom management, the British
Association for CFS/M.E. does not refer to APT and/or pacing. Instead,
it offers ‘pragmatic recommendations from experienced clinicians to
guide practice when seeing adults with CFS/M.E., where specialist
CFS/M.E. CBT and GET therapists are not available/appropriate […]
Evidence-based therapies emphasize a therapeutic relationship that
enables a graded increase in activity and a process to explore barriers
to this increase.’

According to BACME, specialist NHS M.E./CFS services should advocate
collaborative work, patient-led goals and support to stabilise
physiological patterns of rest, sleep, movement and diet. At the same
time, psychological/emotional support should be offered, aimed at
supporting patients to come to terms with being diagnosed and/or living
with the condition, and to understand the factors and behaviours (eg.
doing too much) that jeopardises that stabilisation.

We fully support this approach, and would add that:

• ‘this is best achieved through pacing that utilizes energy
  conservation techniques mindful of heart rate limits. Only then can
  careful training of the anaerobic energy system, (ie, improving the
  body’s tolerance for and ability to clear lactate while increasing ATP
  in resting muscle) be initiated.’ (Van Ness et al, Workwell Foundation,
  May 2018)
• ‘healthcare professionals should recognise that the person with CFS/ME
  is in charge of the aims and goals of the overall management plan. The
  pace of progression throughout the course of any intervention should be
  mutually agreed.’ (NICE guideline for M.E./CFS, 2007)

Read the full statment