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Dr David Tuller: Yesterday's news from the CFS/ME Research Collaborative


Senior Member

Trial By Error: Yesterday’s News from the CFS/ME Research Collaborative
7 MARCH 2018
By David Tuller, DrPH

Two pieces of news dominated yesterday’s announcement from the CFS/ME Research Collaborative: First, the group is narrowing its scope of activities to focus on promoting “the discovery of the biological mechanisms that underpin CFS/ME.”Second, Professor Esther Crawley is not only stepping down as deputy chair of the executive board but leaving the executive board altogether because of an unspecified “new role” at Bristol University.

Given the group’s past statements and actions, it would be wise to reserve full judgement until we see how things play out. But the CMRC deserves praise for these initial steps; they can only be described as positive developments. So is the decision to have people previously involved with the ME/CFS Epidemiology and Genome Alliance patient/advocate advisory group represented on the executive board. (Last year, some members if this advisory group resigned because they felt their views were being ignored and that they were being used as window-dressing.)

Yesterday’s CMRC statement made no mention of MEGA itself. Perhaps that project has been shelved, given that it failed in major bids for funding from the Wellcome Trust and the Medical Research Council. As the lead investigator, Professor Crawley had led those efforts. Presumably the grant rejections raised concerns about MEGA’s future prospects for obtaining support.