‘Making the Invisible Visible’
The History of ME/CFS, the Evolution and Role of the CMRC (A Patient’s Perspective)
This book has been in the works for a number of years, starting in 2006 with the inception of the Alliance, in collaboration with several advisors including Professor Sir Stephen Holgate and a steering group. The Alliance went on to lead an ME/CFS conference in 2008 entitled Putting the Patient at the Centre which was hosted by Professor Sir Stephen Holgate who eventually went on to establish the UK CFS/ME Research Collaborative (of which the Alliance is an affiliated member).
In 2018 a discussion was started about changing the narrative of ME to make it one that patients and carers could recognise more readily. This inspired the Alliance to put in a proposal for a ‘unified voice’ leading to the CMRC Communications Working Group. The work conducted led to in depth research including taking advice from long established charities; all of which fed into a presentation at the CMRC 2020 conference.
The results of the presentation encouraged Professor Sir Stephen Holgate and the CMRC board to support the writing of the book ‘The History of ME/CFS, the Evolution and Role of the CMRC (A Patient’s Perspective)’.