‘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)’.

An excerpt from ‘Making the Invisible Visible’…

For you, the reader, to understand where we are, to see how bumpy the road has been in terms of  research, recognition and validation for the person living with this complex disease, Opal Webster-Philp and Nicola McDonald, authors of The History of ME/CFS, the Evolution and Role of the CMRC (A Patient’s Perspective), went on a journey that transported them back to the 19th century where they discovered Dr Sophia Jex-Blake the founder of the London School of Medicine for Women, later renamed The Royal Free Hospital (NHS).  

The Royal Free Hospital had an outbreak of a virus in the 1950s which had scientists scratching their heads until evidence and analysis of their studies pointed to a new biomedical disease and the coining of the phrase Myalgic Encephalomyelitis. From there the authors travel forward to the 1980’s where a rephrasing and reframing took place and ME was renamed Chronic Fatigue Syndrome (CFS) and treated as a psychosocial ‘illness belief’, based on claims of hysteria among the suffering community who are predominantly female.  

Today embedded in our language is the term ME/CFS or CFS/ME. The narrators examine how one patient’s determination to ensure the ME Community be seen and heard was instrumental in setting the foundation that led to collaboration between patient and science. That patient is Opal Webster-Philp founder of the ME/CFS Alliance Think Tank formerly known as the The Alliance for Fibromyalgia, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). 

This document follows the growth of the CMRC from conception through trials and tribulations and looks at how it was influential in the acquisition of funding for biomedical research that has led to the DecodeME genetic studies. With the support of current members and the agreement of Professor Sir Stephen Holgate, Medical Research Council (MRC) Clinical Professor of Immunopharmacology at Southampton University, to continue as Chair of the CMRC the authors look at what that means in terms of research and science and for this underserved community.

“This journey has now begun. It’s not the end; it’s the beginning. It’s been a 150 year  journey, but we are no further on so we have got to embrace it properly now.” Professor Sir Stephen Holgate