From the ME Association –
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 (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.
You might encourage your MP to sign the EDM. You can locate MP’s email addresses by following this link to the UK Parliament website.
Please expand to include your own thoughts and personal situation as regards ME/CFS, and amend where necessary:
I would like to encourage you to add your name to the EDM above that recognises the important contribution the Countess of Mar has made to the Myalgic Encephalomyelitis patient community, and consider joining the APPG on ME.
It is vitally important for people like me who have this incredibly debilitating neurological condition to have champions in parliament to raise awareness of the issues we face and to help bring about positive change.
ME is estimated to affect 250,000 people in the UK and most of them will have seen it triggered by an infection. Health and social care recognition and support has been poor for far too long, but I believe things are finally starting to improve – as I hope the publication of a new NICE clinical guideline on 18 August will demonstrate.
Post-viral fatigue syndromes that often lead to diagnosis of ME have been in the news and have formed a part of parliamentary discussions for some time now, as people with Long Covid are reporting many of the key symptoms that occur in both post-viral fatigue syndromes and in ME.
The UK now faces a significant increase in demands for health and social care services and welfare benefits, for people with this condition. ONS estimates suggest the number of people reporting symptoms associated with Long Covid could be as high as 1 million.
National charities, like The ME Association, and the ME patient community have a lot to offer people with Long Covid, and the APPG on ME is discussing how we can bring us together to learn from one another for the benefit of all.
If you would like to help, then please consider attending the APPG on ME. You can contact Carol Monaghan MP (Chair of the APPG on ME) for more information.
With kind regards
[Name and address]