Campaigning
M.E awareness for 2022
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 2022
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
Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model
Abstract
Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who are able to attend clinics. It is estimated that 25% of people with ME/CFS are severely, or very severely, affected and are housebound or bedbound; some require tube feeding. Due to the severity of their illness, these patients have largely been excluded from research and are often described as ‘hard to reach.’ A questionnaire was devised to gather data about their experiences of accessing tube feeding. By making the necessary reasonable adjustments, such as direct outreach and the option to complete the questionnaire by telephone or texting, very severely affected patients were enabled to participate and provided invaluable contributions. This study aimed to act as a model for future researchers.
WHAT WE DID IN 2022
This has been a busy year for The 25% ME Group, with participation in a range of initiatives. Here – in no particular order – is a quick round up of work we have undertaken on behalf of members.
Core Guidance NG206
Key extracts from the ME/CFS guideline published by NICE October 2021, with a focus on changes that are required and the care and support of severely affected patients. Also highlights the health professional’s duty, in complying with the law on informed consent, to explain potential risks as well as benefits of the course of action being recommended to their patient.”
Additional information from other organisations in relation to this guidance
BLUE RIBBON for the AWARENESS of ME
Information concerning ME Awareness
An Introduction to Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
These three educational videos introduce what ME/CFS is, how to diagnose it and how to manage the most common symptoms.
The videos are adapted from recordings I created for the 1st year medical students at the University of Calgary. They are suitable for anyone relatively new to the disease: patients, loved ones, carers and health care practitioners.
The recordings on diagnosis and management include audio clips from real patients sharing their experience.Thank you to all of the contributors ranging from people who are significantly recovered and people who remain severely ill.