UK Parliament and ME/CFS

Yesterday’s (12 May 2022) highly welcome statement from the Rt Hon Sajid Javid, Secretary of State for Health and Social Care in which he acknowledged

Firstly, that we do not know enough about ME/CFS, which must change if we are to improve experiences and outcomes. Secondly, we must trust and listen to those with lived experience of ME/CFS.

is not the only parliamentary initiative on ME/CFS at Westminster. On 11th May, MP Carol Monaghan tabled an Early Day Motion for ME Awareness Week

That this House recognises 12 May 2022 as Myalgic Encephalomyelitis (ME) Awareness Day, which aims to highlight the impact this condition has on approximately 250,000 people across the UK; commends the endless dedication of campaigners and charities working to raise awareness of ME as a serious and debilitating neurological condition; welcomes the publication of the new National Institute for Health and Care Excellence guidelines on ME/CFS which has removed the recommendation of graded exercise therapy; looks forward to the full implementation of these guidelines as part of a complete overhaul of how ME services are planned and delivered; and calls on the Government to take urgent and significant steps to improve health and social care provision for people with ME.

UK Parliament website

Early Day Motions are motions submitted for debate in the House of Commons for which no day has been fixed. As there is no specific time allocated to them very few are actually debated. However, they put on record the views of individual MPs or help draw attention to specific events or campaigns. By attracting the signatures of other MPs, they can be used to demonstrate the level of parliamentary support for a particular cause or point of view.

Carol Monaghan MP is Chair of the All Party Parliamentary Group on ME which, on 25 May 2022 ,will be holding a parliamentary reception in which the APPG will reflect on progress being made to improve recognition and understanding of ME amongst the medical profession and other relevant professions. Invitees will hear directly from people with ME on their desire for better care and support, and the Secretary of State for Health and Social Care, the Rt Hon Sajid Javid MP, will deliver keynote remarks.

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