Campaigning
M.E awareness for 2018
Awareness helps in several ways: it educates the public and healthcare providers, reducing stigma and promoting early diagnosis; it drives funding for research into causes and treatments, as there’s currently no cure; and it fosters empathy and support for those living with ME, who often feel isolated due to the condition’s impact on their daily lives. By shining a light on ME, we can improve quality of life for millions and push for better medical and social resources.
raising awareness for 2018
Raising awareness for Myalgic Encephalomyelitis (ME), also called Chronic Fatigue Syndrome (CFS), is vital because it’s a misunderstood and often invisible illness. ME is a severe, chronic condition that impacts multiple body systems, leading to extreme fatigue, pain, brain fog, and post-exertional malaise—where even small activities worsen symptoms.
This Years Focus
Campaigning for the NICE committee
Myalgic encephalomyelitis (or encephalopathy) /chronic fatigue syndrome: diagnosis and management
National Guideline 206 ♦ published 29 October 2021
House of Commons debate on the Pace trial and people with ME
Following the excellent parliamentary debate held 20th February on ‘The PACE Trial and its effect on people with ME’, we are focusing on raising awareness among MPs of the serious problems posed for people with M.E. inherent in the way the NHS approaches this illness.
Carol Monaghan MP, who initiated and led the debate, is asking that any person with M.E. who has deteriorated as a result of following NHS advice make contact with their constituency MP to make them aware. She has heard from many ME patients but is limited in what she can do for other MPs’ constituents. So, if you have been harmed by NHS advice, including ‘PACE’ trial style exercise or ‘behavioural therapy’ aimed at exercise, please let your MP know your story. Carol Monaghan would like to be copied into these communications.
This is very much a case of ‘strike while the iron is hot’ and we encourage you please to take up this suggestion if it is appropriate to your experience. We are aware that some members were not severely affected until following NHS advice to exercise or otherwise increase activity. Now is the time to get this scandal out into the open.