Extract:
BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)
A new Report from Tymes Trust
August 2014
(...)
At the end of January a meeting was held at which 'harassment' of researchers was discussed.
The Medical Research Council (MRC) and the Science Media Centre (SMC) are two of the UK
CMRC Observers. Ed Sykes, SMC Head of Mental Health, attends the meetings of the Executive Board on behalf of the SMC, while Joe McNamara & Neha Issar-Brown attend on behalf of the MRC. The MRC contributed nearly £5000 to the launch of the Collaborative and have stated their willingness to be involved in and contribute further both directly and in kind.
· On the 1st February 2013, an email was sent from the out-going Head of Mental Health at
the SMC. It was a “write up of the main points to come out of” the ‘CFS’ meeting held at
the Wellcome Trust the day before. (quote 13)
· “All the best with this for the future, I hope the launch of the research collaboration goes
well and that it gets easier to do research in this field.” (quote 14)
· Those in attendance at this meeting had included UK CMRC members Peter White of
QMUL, Joe McNamara and Carmel Turner of the MRC and Esther Crawley of Bristol
University. Simon Wessely & Trudie Chalder of IOP, King’s College London were also in
attendance.
· Quotes 15-18 are taken directly from this meeting's records in the email of 1st February.
· (quote 15)
Current situation:
- ‘Coming out’ about the harassment has led to increased support for CFS/ME
researchers, for example, from colleagues who were not aware of the situation.
· (quote 16)
Harassment
- Harassment is most damaging in the form of vexatious FOIs.
- Complaints are also causing problems. Researchers are still dealing with complaints
about them to the GMC.
- House of Lords Debates on CFS/ME can result in Parliamentary Questions which often
require detailed responses
· (quote 17) ….. researchers are using strategies to reduce the impact of harassment and put
the case for research into CFS/ME including:
- Learning about the FOI Act and using strategies to reduce time spent responding, eg
putting minutes of meetings online
- Coming together as a research community to respond to criticisms eg the joint letter in
response to criticisms of Simon Wessely receiving the John Maddox prize.
- Working with trusted journalists to cover the problems associated with CFS/ME
research
- Esther Crawley and Stephen Holgate are establishing a research collaborative including
researchers, charities and other interested parties. There will be a launch event on 22nd
April.
· (quote 18) from Action Points
- SMC – run FOI Act brainstorm
- ALL – look for opportunities to publicise CFS/ME research and give background
information about the condition
- Support4rs – work with Peter White and Simon Wessely to develop resources for
dealing with harassment
- SMC – run a press briefing on biosocial illness to improve public understanding. Fiona
Fox to get information from Trudie Chalder and Rona Ross-Morris.
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