Margaret Mar Retires as Chair of Forward-ME

Commenting on the changes, Russell Fleming (Content Manager for the ME Assocation) said:

“It is both an exciting and sad time for Forward-ME. We have taken the decision to think carefully about how the group can position itself to best serve the needs of the ME/CFS community in the years ahead. This follows many years of campaigning to change the medical mindset on, for example, the recommendation in the current NICE guideline. With publication of the new and more accurate guideline due in August, and an improving view of ME/CFS within the medical community, Forward-ME can consider repurposing itself and taking time to think of the things that will be important in this changing landscape.

“We are sad to see the Countess of Mar depart from Forward-ME and wish her well in her retirement. She has taken on many roles in both a personal and parliamentary capacity over her many years of advocacy for this community. Her chairmanship of the Forward-ME, her constant willingness to be involved with promoting biomedical research, improving medical education, asking parliamentary questions, securing the PACE trial debate, and helping with difficult individual cases. Above all, Margaret has been someone who provides sage advice when needed and has been a champion of collaboration. On behalf of the ME Association, I would like to thank her for all she has done to support this charity and the ME/CFS patient community.”

Margaret Mar
8 April 2021

It is nearly 13 years since Forward-ME was founded with a core group of nine ME charities and support groups. We now have more than 17 charities and associate members. The whole scenario has changed considerably since those early days. Despair has gradually turned to hope. There is more public understanding of ME and, with a few notable exceptions, the professions are exhibiting more appreciation of the complexities of the disease. The rewriting of the NICE Guideline for ME/CFS is eagerly anticipated despite the repeated deferrals of the publication date. Thanks to the work of the UK CFS/ME Research Collaborative, the grant of more than £3 million for a large genomic study of people with ME is under way.

From a personal point of view, I have been rewarded by the determination of all Forward-ME members to set aside their differences and to work together to achieve the objectives we agreed upon at our first meeting. We still have some way to go, but the foundations have been laid for our continued cooperation. I realise that what is needed for our future is a different approach to our relationships with people outside our small community. Instead of the ad hoc basis I have worked under, an efficient system of management would significantly enhance our impact. Good fortune has sent us just the right person in Andrew Morris who has all the skills and experience we need. Additionally, he has a daughter with ME and the determination to improve the world for people with ME. As you will see from the minutes of our meeting on 16 March 2021, he has given the matter much thought and has now said that he is willing to take over from me as Chairman. I will still be around for a while, as it is intended that the changeover should be smooth and it may take a while for Andrew to find his way around. We will work in tandem until I am no longer needed. He is at the front!

It only remains for me to thank everyone with whom I have been involved over 25 years of working with people with ME, particularly members of Forward-ME, for inspiring me, to wish you well and to remind you all that Unity is Strength!