ME Awareness 2022

WHAT WE DID IN 2022

WHAT WE DID IN 2022

“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.”

25% ME Group NICE Guidance

Additional information from other organisations in relation to this guidance

Other Orgs Resources on NG206

BLUE RIBBON for the AWARENESS of ME (BRAME) poster

BRAMEposter

Please email enquiry@25megroup.org if you would like a free Blue Ribbon AND/OR poster. Or send an S.A.E to 25% ME GROUP, 21 Church Street, Troon, Ayrshire. KA106SQ

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.

https://www.eleanorsteinmd.ca/ME-CFS-introduction-videos?wvideo=bk41bhbpby

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.