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:
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:
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:
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: