November 09, 2016
Bringing together M.E. advocates and charity representatives from six countries, the M.E./CFS International Alliance has written jointly to the National Institutes of Health, protesting its decision to host a lecture by Dr Edward Shorter on the history of M.E.
Writing in the journal Psychology Today last year, Dr Shorter said that many people with M.E. have “a kind of delusional somatisation, the unshakeable belief that something is wrong with their bodies rather than their minds.”
There has been considerable concern in the M.E. community that such a view should be given prominence, and the International Alliance’s letter adds to growing calls for the lecture to be cancelled.
Sent to Dr Patricia Grady, Institute Director, National Institute of Nursing Research by Sonya Chowdhury, CEO, Action for M.E., on behalf of the M.E./CFS International Alliance, it says:
At our meeting on 7 November, we discussed your Department’s decision to invite Dr Edward Shorter to present a lecture to you on 9 November 2016 entitled “Chronic Fatigue Syndrome in Historical Perspective”. On behalf of the many people represented by our organisations, we felt compelled to write to you. We were shocked by this decision given the NIH’s clear commitment to redressing the appalling history of stigma, disbelief and lack of investment in an illness endured by 20 million people worldwide.
Dr Shorter has made very bold and controversial statements, without any evidence base, about this very real and debilitating illness that steals the lives of many millions of people. He fails to respect or even consider overwhelming evidence from eminent scientists working in this field, some of whom are funded by the NIH. Just because we don’t know the biology of the illness and its cause/s, it does not mean that the illness should be dismissed and ridiculed in the way that Dr Shorter has done, and continues to do. The use of terminology such as “psychic illness” and referring to people with M.E./CFS as being “delusional” has no valid basis in this illness field.
We need strong, evidenced-based debate and rigour to tackle this illness; not harmful, unfounded and derogatory attacks on people who quite frankly, deserve better. The NIH embodies this high standard of expectation and endeavour through its research programmes and we are unable to see how Dr Shorter’s input can create the value that is deserving of such an invite.
We therefore respectfully request that you either reconsider your invite or ensure that a very balanced, evidence-based scientific perspective is presented alongside Dr Shorter’s to reflect the findings of the NIH-commissioned Institute of Medicine report (2015). We would be delighted to make any recommendations of eminent, knowledgeable and reputable scientists that could provide this for you.