The ME Association (MEA) announced -
Carol Monaghan MP (Chair of the All-Party Parliamentary Group on ME and Deputy Chair of Forward-ME) has tabled an early day motion to mark the retirement of the Countess of Mar from her role as founding Chair of Forward ME. Lady Mar will continue in her role as patron of the ME Association.
- EDM 90 Notice and Text
- MEA statement about the Countesses retirement from Forward-ME
- Forward-ME Website
EDM (Early Day Motion) 90: Retirement of the Countess of Mar as Chair of Forward-ME.
Motion Text: That this House:
- Marks the retirement of the Countess of Mar as the Founding Chair of Forward-ME,
- Congratulates her on the success of Forward-ME which was established in 2008 to promote effective joint working between charities and organisations in order to maximise impact on behalf of people with Myalgic Encephalomyelitis (ME),
- Acknowledges the far-reaching impact she has had in supporting, representing, and championing people with ME,
- Recognises her work improving medical education and promoting biomedical research,
- Notes her parliamentary advocacy which included leading a landmark House of Lords’ debate on the PACE trial,
- Commends the part she played in securing improvements to the National Institute for Health and Care draft revised guidance on ME,
- Sincerely thanks her for her years of dedicated service to the ME patient community; and wishes the Countess of Mar the very best in her retirement.
In April the MEA announced -
Margaret Mar Retires as Chair of Forward-ME -
Forward-ME is undergoing a reorganisation and considering how it would best serve the patient community in the future. After many years of dedicated service, the Countess of Mar is stepping down and will be replaced by Andrew Morris as Chair.
The Forward-ME website contains a personal letter from Margaret Mar, which includes an introduction to Andrew Morris, the new Forward-ME Chair.
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!
8 April 2021
Last year: ME Research UK (MERUK) -
The Countess of Mar - an Appreciation.
The MERUK Appreciation includes -
From 1st May 2020, when the Countess of Mar retires officially from the House of Lords after almost 45 years’ service, the ME community will be losing a champion of the first rank and a redoubtable campaigner for acceptance of the illness, for research and for the proper treatment from government and the NHS of those affected by ME.
Her zeal for a revolution in the perception and treatment of ME/CFS stemmed from her own experience of organophosphate poisoning which led to autonomic dysfunction. Concern turned to action and she was a member of several European Community Select Committees – on the environment, agriculture and consumer protection, and secretary of the All-Party Parliamentary Group on Pesticides and Organophosphates and a leading light and vice-chair of the All-Party Parliamentary Group on ME.
In the House, Hansard records 36 instances of the Countess speaking to the Chamber specifically about ME/CFS (since such records were indexed from 2006). This does not include contributions to debates regarding neurological conditions or concerning those affected my long-term chronic illnesses in general. The contributions run the full gamut of issues which affect the ME community - social security, personal independence payments, work capability assessments, children and young persons, as well research. Her comments on the PACE trial (6 February 2013), CBT (18 March 2013), and neurological conditions (11 October 2010) are especially noteworthy and informed, and reward a re-visit.
Take care, and stay safe everyone.
• A.P.P.G • Forward ME • M.E. Association • MERUK
• MP • Parliament U.K.