For some additional context, for those who haven't already seen it:
http://bit.ly/1vSRhOI
BEHIND THE SCENES:
SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)
A new Report from Tymes Trust
31 August 2014
Includes extracts from exchanges obtained under FOI that took place prior to the setting up of the UK CFS/ME Research Collaborative (UK CMRC, with references to Science Media Centre involvement, Fiona Fox and Support4rs.
http://www.support4rs.com/about-us/
(currently undergoing maintenance)
Company is risk management outfit. Some pages can be viewed via webcache
http://webcache.googleusercontent.com/search?q=cache:http://www.support4rs.com/about-us/
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Jane Colby document attached in PDF format
Extract
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