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​Our Board of Trustees on CBT, GET and PACE

May 16, 2017

In April, our Board of Trustees met to discuss Action for M.E.’s position on a range of key issues relating to our work.

This includes a number of serious concerns raised by our supporters and others in the M.E. community that:

  • there is a continuing emphasis on behavioural treatments for M.E., despite it not being a mental health condition
  • their personal experience of these treatments does not reflect published findings supporting the use of cognitive behavioural therapy (CBT) or graded exercise therapy (GET) as reliable treatments for people with M.E.
  • their questions about these issues have not been adequately addressed.

Action for M.E. shares these concerns, and would like to make the following clear.

CBT and GET

Action for M.E. does not recommend any single form of intervention or treatment for M.E.

The wide range of experiences reported to us by people with M.E. show that the symptom management approach most commonly cited as helpful by people with M.E. is pacing, though it does not provide benefit to all. Some find GET and/or CBT helpful; others find they make no difference, or make their symptoms worse.

On this basis, Action for M.E. does not support a blanket approach to the provision of CBT and/or GET.

The fact is that there are no treatments that offer reliable and significant improvements for people with M.E., and we still face the issue of not knowing enough about the biology of M.E. to target treatments appropriately. Lack of investment in research and specialist healthcare provision for M.E. leaves large numbers of people with M.E. unable to access the support they desperately need.

This is absolutely not good enough, and it must change. That is why Action for M.E. actively supports investment in collaborative research that helps us stratify the illness, identify biomarkers, and ultimately lead to better treatments, and hopefully a cure. We will continue to work to ensure that voices and experience of people affected by M.E. and CFS lie at the heart of this.

The PACE trial

The PACE trial, the only large-scale research trial undertaken to test the effectiveness of CBT, GET and pacing as treatments for people with M.E., has been subject to considerable scrutiny and criticism since publication of its initial results in 2011.

Action for M.E. supports evidence-based research, including critical analysis of, and scientific debate about, published findings. Our Board has already stated that Action for M.E. actively supports the sharing of research data to enable replication and validation, and we now require all researchers we fund to agree to undertake this.

Following the release of anonymised data from the PACE trial, a December 2016 paper published in the peer-reviewed journal Fatigue: Biomedicine, Health and Behavior concluded that "the claim that patients can recover as a result of CBT and GET is not justified by the data."

Repeated questions continue to be raised by researchers, clinicians and people with M.E. who have concerns about the methodology and conduct of the trial, its clinical value, and the impact on patients who feel that their concerns have been dismissed.

Action for M.E believes that:

  • it is vital that valid questions, raised about the science conducted as part of the PACE trial, be addressed as a matter of urgency, and that the experiences of the patient community are not ignored
  • a review of the NICE guideline must take full account of emerging biomedical research, the views and experiences of people with M.E., and clearly reflect nuances around findings and re-analysis related to the PACE trial
  • the field must move forward by bringing in new researchers, more funding for biomedical research, and more effective engagement with policy makers. The focus on the scientific debate around the PACE trial above all else is preventing this from happening.

Two months ago, an open letter to the journal Psychological Medicine, co-signed by a substantial number of scientists, and supported by patient organisations in the UK, US and Europe, asked that the journal retract its 2013 paper, Recovery from chronic fatigue syndrome after treatments given in the PACE trial.

As reported by the New York Times, the journal has said it has “no plans to retract the study but is open to publishing a re-analysis of data in any papers it has published.” Therefore signing now will have no impact.

What Action for M.E. is doing

We will support the ongoing scientific debate around the PACE trial by:

  • actively disseminating updates relating to this on our website and social media
  • revising our information on GET, CBT and pacing to reflect these.

We will be proactive in engaging with the National Institute for Health and Care Excellence (NICE), reiterating the need for an urgent review of its guideline on M.E. in the light of continuing gaps in the evidence base for effective treatment, and scientific debate about the findings of the PACE trial.

We will continue to focus on meeting the needs of people affected by M.E. every day, and taking action to secure change for the future, by:

  • sharing targeted information and support, and reducing isolation, to improve the lives of children, families and adults affected by M.E.
  • raising awareness and understanding of M.E. and its impact among professionals, policy-makers, parliamentarians and the public
  • consulting with people affected by M.E. about their experiences of care and support, and working with professionals and decision-makers to increase access to appropriate health and care services, employment and education support, and welfare benefits
  • investing in pilot projects to bring new researchers to the field, and playing a leading role in driving new collaborations to increase interest and investment.