Dr. Paul Cheney, MD, PhD, a world expert on ME/CFS, commented at a recent Invest in ME conference that the notion patients can ‘exercise their way to health with this illness is foolishness"… "insanity." As of February 18, 2011, the comments became hugely relevant, and central to an international furor among patients and advocates.
Dr. Cheney was speaking on the subject of graded exercise therapy (GET, which involves a steady planned increase in physical exercise). But the topic gained international visibility on Feb 18 with an article published by the Lancet on the UK’s so-called ‘PACE Trial’ – comparing the effects on ‘chronic fatigue syndrome’ patients of adaptive pacing (increasing exercise only as possible within an 'energy envelope' to avoid post-exertion relapse), GET, cognitive behavior therapy (CBT), and being managed by a specialist who would give general advice and prescribe medications for symptoms such as pain. Their conclusion: GET and CBT are effective and safe, pacing is not effective.
Headlines in the global media picked up the theme – for example, “Got ME? Just Get Out and Exercise, Say Scientists.”
A firestorm of objections erupted among patients/advocates around the world. For example:
• The Whittemore Peterson Institute issued a response titled "UK PACE Trials: When Misguided Doctors Can Do More Harm Than Good" noting that treating the physical infectious symptoms of ME/CFS with CBT or GET would be as irresponsible as prescribing these therapies for strep throat or Hepatitis C.
• "The IiME’s Initial Statement on the PACE Trials" begins by stating that they “demonstrate clearly what is wrong with the present way that vested interests have manipulated the establishment view about ME/CFS and forced tens of thousands of patients and their families to live in a continual state where no proper research is sanctioned, good science is denied, and pointless and biased studies are funded by a system which denies human rights.” The issue will be a key topic in the 2011 IiME Conference, set for May 20 in London (“The Way Forward for ME – A case for Clinical Trials").
• A PACE Trial is NOT for M.E. Facebook page offers comments on articles, a growing number of links to information that would refute the Lancet report, and to advocacy initiatives.
• Calls for a coordinated response spread like wildfire. One example of the advocacy initiatives is the one launched by www.MECFSforums.com – a list of links to media articles and reports on the trial (some criticizing it, some parroting it). The suggestion is to go to these sites and contact the journalists directly, either with facts refuting the PACE Trial or to thank them for balanced reporting. The list includes the Wall Street Journal, New York Times, LA Times, Reuters, BBC, and CBC – to name a few. Other posts in the string point to sources of information worth including in emails to the media.
• The CFIDS Association of America pointed out in a Feb 21 email that "there were no biological measures taken during the study to correlate with the results. Read our detailed analysis of the study…Falling Off the PACE." (Which observes, "as we have seen with other recent studies, statements made in the press release and press conference get more attention than somewhat more tempered statements or details of the paper itself.")
• And stay tuned – there's surely much more to come. For those interested in details of the PACE Trial therapies, a brief summary of the therapies and results is provided in the the PACE Trial Feb 2011 "Participant Newsletter" http://www.pacetrial.org/docs/participantsnewsletter4.pdf . And for more specific detail, manuals that the therapists used can be found at http://www.pacetrial.org/trialinfo.html.