AndyPR
Senior Member
- Messages
- 2,516
So the CMRC has now confirmed this to David Tuller
This is despite the awful anti-patient speech that she gave at the recent BRS conference - see http://forums.phoenixrising.me/inde...-how-to-deal-with-anti-science-brs2017.51066/
The statement issued by the CMRC concludes
Surely if they wanted to alleviate the suffering of ME patients then they would make an attempt to explain away the speech by Crawley or even actually condemn the patient insulting, data hiding encouraging and libellous speech itself (OK, I know that second option is never going to happen).
In all of this, we haven't heard a thing from the three patient charities involved in the CMRC - Action for ME, the ME Association and ME Research UK.
We can encourage them to commit to a public position by contacting them individually to express our own view on this situation. Please, for the moment at least, be firm but polite, as chances are the person you will be directly contacting will not be the person responsible for decision making.
Action for ME:
which he has written about in his latest blog post - http://www.virology.ws/2017/05/15/t...mrc-affirms-full-support-for-libelous-esther/Prof Esther Crawley has the full support of the CMRC Executive Board in her role as Vice-Chair.
This is despite the awful anti-patient speech that she gave at the recent BRS conference - see http://forums.phoenixrising.me/inde...-how-to-deal-with-anti-science-brs2017.51066/
The statement issued by the CMRC concludes
[My bolding]only goals are to improve our understanding of this serious illness and help alleviate suffering. In the meantime, our work remains focused on increasing collaboration and funding for more research and we will continue to work with all key stakeholders to achieve this.
Surely if they wanted to alleviate the suffering of ME patients then they would make an attempt to explain away the speech by Crawley or even actually condemn the patient insulting, data hiding encouraging and libellous speech itself (OK, I know that second option is never going to happen).
In all of this, we haven't heard a thing from the three patient charities involved in the CMRC - Action for ME, the ME Association and ME Research UK.
We can encourage them to commit to a public position by contacting them individually to express our own view on this situation. Please, for the moment at least, be firm but polite, as chances are the person you will be directly contacting will not be the person responsible for decision making.
Action for ME:
Facebook https://www.facebook.com/actionforme/posts/ - Can post to their page or message them
Email questions@actionforme.org.uk
ME AssociationEmail questions@actionforme.org.uk
Facebook https://www.facebook.com/pg/ME-Association-171411469583186/posts/ - Post to page or message.
Email admin@meassociation.org.uk
ME Research UKEmail admin@meassociation.org.uk
Facebook https://www.facebook.com/MEResearchUK/ - Message only.
Email meruk@pkavs.org.uk (Yes, this is their listed email address)
Please remember that we want the organisations that claim to speak and represent us to make their positions known, my suggestion is at the moment we ask for this and explain what our views are.Email meruk@pkavs.org.uk (Yes, this is their listed email address)