The Equality Act 2010 defines disability as “a physical or mental impairment that has a substantial and long-term adverse effect on the ability to carry out normal day-to-day activities.”
This includes ME.
As a health, social care, education or other professional supporting someone with ME of any age, the most important thing you can do listen.
Start from a position of belief, with an understanding of ME’s impact on them specifically – everyone’s experience is different.
The 2021 NICE guideline for ME says: "Recognise that people with ME/CFS may have experienced prejudice and disbelief and could feel stigmatised by people (including family, friends, health and social care professionals, and teachers) who do not understand their illness."
It highlights the key symptom of post-exertional malaise, and advises that professionals "discuss with people with ME/CFS the principles of energy management."
Pacing is self-management technique that people with ME often use to balance their limited energy with rest and what activity they can manage. For those with severe or very severe ME, moving from lying to sitting in bed counts as activity.
People with ME must not be offered any therapy based on physical activity or exercise as a cure; or any programme that uses fixed incremental increases in physical activity or exercise, for example, graded exercise therapy (GET).
Our Professional development for ME resource signposts to online learning, training and resources for health, social care, education and other professionals, including our Learn about ME podcasts and webinars, produced to complement Dr Nina Muirhead's free CPD accredited Learna module on ME. Based on clinical case studies and the latest biomedical evidence, the module offers reading and references to support further learning.
Our Information and Support team welcome calls and emails from any professionals working with people with ME. We can share resources and signpost to support for patients and/or clients.
Our Healthcare Services team includes doctors, physiotherapists, counsellors and chaplains, offering individually tailored whole-person care, with an understanding of severe ME. As a charity, we charge fees for our Healthcare Services only to cover our costs, and a bursary for up to 50% of fees may be available, depending on your circumstances.
Watch the full webinar on our YouTube channel, using the link below.
