Trial By Error: Yesterday’s News from the CFS/ME Research Collaborative

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 of 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.

Beyond yesterday’s announcement, the CMRC could take another easy step that would grab the attention of the patient and advocacy communities: change its name to the ME/CFS Research Collaborative, or even just the ME Research Collaborative. There’s no point in continuing to lead with “chronic fatigue syndrome” just to cater to the preferences of the CBT/GET ideological brigades. Everyone else appears to recognize the damage and misunderstanding that name has caused in the thirty years since it was coined.

I’m pretty busy right now getting ready for my trip to Australia–I leave next Monday. Many of my posts in subsequent weeks will likely be Australia-oriented, but I do hope to write more about the CMRC announcement as well. And perhaps more information about what transpired and how these changes came about will become available. To that end, this morning I e-mailed the following note to Sue Paterson, director of legal services at the University of Bristol:

Dear Ms. Paterson–

I’m writing a post for Virology Blog about the change in leadership at the CFS/ME Research Collaborative. The announcement that Professor Crawley is stepping down from the position on the board mentioned that she has a “new role” at the University of Bristol.

Disappointingly, the announcement was opaque on what this new role entails. And I have so far been unable to find any reference to her new role on the university’s website. Can you provide me with any more information on Professor Crawley’s new role at Bristol, or shed any further light on the circumstances of her departure from the CMRC?

Thanks much! And please extend my congratulations to Professor Crawley on her new role at Bristol.

Best–David

David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley