Jo Best
Senior Member
- Messages
- 1,032
The BBC journalist had contacted the conference organisers Invest in ME Research and they gathered a few people to be interviewed including scientists and Norwegian advocate and mother of three children with ME Kjersti Krisner, who introduced David Tuller at the pre-conference evening dinner and whose own pre-conference dinner presentation from 2016 (included on the IIMEC11 DVD) is now online (warning for patients/carers that it is about very severe ME and could be upsetting to watch): http://www.investinme.org/IIME-Newslet-1705-01.shtml
Jane Colby (Executive Director of The Young ME Sufferers Trust) was involved with the BBC Panorama programme aired in 1999 'Sick and Tired': http://news.bbc.co.uk/2/hi/programmes/panorama/archive/506549.stm
In the context of the London conference, she was the only UK ME charity representative to give a public comment of support for the Invest in ME Research Centre of Excellence for ME via the Let's Do It for ME crowdfunding campaign launched in 2011 by people with severe ME, as did the Chairman of the Forward-ME Group Countess of Mar.
Interestingly and coincidentally, patients sent their press release for Let's Do It for ME on the same day as the 'dangerous ME extremists' media frenzy orchestrated by the Science Media Centre and launched (if memory serves me) by BBC Radio 4 Today Show. No surprises for guessing which story was splashed across the British media.
Here we are, some six years later, still being ignored in public, while the actual work progresses, as evidenced by the London Invest in ME Conference, and as reported on by regional BBC Look East in January 2017:
http://www.investinme.org/IIME-Newslet-1701-02.shtml
Also in the context of the child protection issues, here's the lovely Dr. Nigel Speight at the conference yesterday.
Jane Colby (Executive Director of The Young ME Sufferers Trust) was involved with the BBC Panorama programme aired in 1999 'Sick and Tired': http://news.bbc.co.uk/2/hi/programmes/panorama/archive/506549.stm
In the context of the London conference, she was the only UK ME charity representative to give a public comment of support for the Invest in ME Research Centre of Excellence for ME via the Let's Do It for ME crowdfunding campaign launched in 2011 by people with severe ME, as did the Chairman of the Forward-ME Group Countess of Mar.
Interestingly and coincidentally, patients sent their press release for Let's Do It for ME on the same day as the 'dangerous ME extremists' media frenzy orchestrated by the Science Media Centre and launched (if memory serves me) by BBC Radio 4 Today Show. No surprises for guessing which story was splashed across the British media.
Here we are, some six years later, still being ignored in public, while the actual work progresses, as evidenced by the London Invest in ME Conference, and as reported on by regional BBC Look East in January 2017:
http://www.investinme.org/IIME-Newslet-1701-02.shtml
Also in the context of the child protection issues, here's the lovely Dr. Nigel Speight at the conference yesterday.
Last edited: