4 March 2011
Action for M.E. Policy Group trustees met on 3 March to discuss how to deal with the consequences of the recently published PACE trial paper. They were grateful for the email responses to their invitation for suggestions for, and comments on, how Action for M.E. should handle this matter.
Key points discussed included:
1. The messages of support and offers to help were welcome but the anger and concerns expressed in some responses were also noted carefully. Many of these concerns are shared by Action for M.E., especially the exaggerated interpretation of statistical data on therapeutic effectiveness and safety and failure to highlight the limitations of the trial.
2. However, some of the points sent in showed that we need to clarify some issues so we reiterate that:
- The PACE trial would have gone ahead in any event, with or without Action for M.E.’s participation
- Our motive for being involved was to achieve proper recognition of pacing as a therapy
- Action for M.E. strongly rejects the illness reversal hypothesis attributed to CBT and GET in the PACE trial papers (see IACFS statement for further comment)
- Action for M.E. is unequivocally of the view that M.E. has a physical cause. We support the World health Organisation classification of M.E, and we do not subscribe to the psycho-social model.
3. We maintain that pacing as described in our pacing booklet is an appropriate energy management therapy, which also supports self management. In repeated UK-wide surveys, the last one involving over 2760 respondents, over 80% of people with M.E. told us they find pacing useful.
4. There is a growing body of comment that reinforces our stance that the PACE trial findings have been exaggerated.
5. A number of NHS clinicians have voiced discreet support for pacing and for our response to PACE.
6. We will draw on the helpful commentaries that people have sent in and on our in- house work to produce a more substantial article on PACE in the next issue of InterAction than was possible for the current issue.
7. We will continue to respond vigorously to inappropriate media reporting on M.E.
8. Detailed analysis of the results of our study into GET/GAT and Exercise on Prescription is going well and we hope this will be complete in time to inform our response to future PACE trial papers. We will also use these findings to keep reminding healthcare professionals of the need to recognise and mitigate the risks of adverse outcomes.
9. We anticipate a risk that DWP Guidelines as well as NICE Guideline 53 could be revised inappropriately through poor understanding of the reality of the PACE trial results. We will campaign accordingly.
10. Following the publication of the article “Making an insurance claim” in this month’s edition of InterAction, we will collect evidence from people with M.E. about their experiences with the health insurance industry and monitor any future trends that may reflect the PACE trial being inappropriately used to define M.E. as a functional disorder as opposed to an organic disease.
11. Pressing ahead with properly funded biomedical research in the UK remains a top priority.
We continue to welcome feedback about people’s reaction to the PACE trial and ideas on how to address it. Please forward comments and suggestions to Policy Officer Tristana Rodriguez.
Read our initial response to the PACE trial results - PACE: "surprising and disappointing".
