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​Action for M.E. to sign open letter to Lancet

June 20, 2018

Yesterday, Prof Vincent Racaniello, Columbia University, sent a letter to The Lancet about the PACE trial, asking the journal to “commission an independent re-analysis of the individual-level trial data, with appropriate sensitivity analyses, from highly respected reviewers with extensive expertise in statistics and study design.”

Having contacted David Tuller, who helped circulate the letter and published it on his blog, Action for M.E.’s Chief Executive Sonya Chowdhury has confirmed that she will sign it on behalf of the organisation. We understand that, over the next few days, the option to support the letter will also be offered to other charities and advocacy organisations.

Already co-signed by more than 90 international clinicians and researchers, the letter highlights that:

  • the behavioural treatments CBT and GET tested in the PACE trial, the results of which were published in the Lancet in 2011, were “based on the hypothesis that ME/CFS patients harbor ‘unhelpful’ convictions about having an ongoing organic disease and that the perpetuation of their devastating symptoms is the result of deconditioning”
  • by contrast, a 2015 report by the US Institute of Medicine (now the National Academy of Medicine) makes it clear that the defining symptom of the condition is “a systemic intolerance to exertion; if patients exceed their available energy resources, they can suffer serious and prolonged relapses”
  • a growing number of international health authorities, including the US Centers for Disease Control and the Dutch Health Council have stopped recommending CBT and/or GET as suitable treatments for M.E.
  • earlier this year, leading American clinicians who specialise in M.E. “unanimously agreed that the two PACE treatments are inappropriate and possibly harmful for patients.”