A brand-new one-page infographic has been created by the ME Association to help healthcare professionals make an accurate and early diagnosis in people with ME/CFS. It includes expert information from Dr Charles Shepherd (Honorary Medical Adviser to the ME Association), and is based on the new NICE guideline on ME/CFS.
ME (myalgic encephalomyelitis or encephalopathy), also known as CFS (chronic fatigue syndrome), is multisystemic disease involving the brain, muscle, immune and neuroendocrine (hormone producing) systems. It affects at least 250,000 people in the UK, and can affect all ages and ethnicities. Around 25% of people are severely or very severely affected, meaning they are housebound or in some bases bedbound, have speech and swallowing difficulties, and require 24 hour care. They may also require tube feeding (via a nasogastric or percutaneous endoscopic jejunostomy tube) to maintain their nutritional needs and fluid intake.
Additionally, many people with Long Covid have debilitating fatigue and other ME/CFS type symptoms. A significant proportion of people with Long Covid also meet diagnostic criteria for ME/CFS.
The guide provides an overview of the steps primary care practitioners should undertake and when to refer to secondary care. It contains vital information to support healthcare professionals identify ME/CFS, understand key symptoms, the type of investigations to undertake, and information relating to NHS specialist referrals.
For instance, the key diagnostic symptoms of ME/CFS are profound debilitating fatigue that is made worse by activity and not relieved by rest; post exertional malaise - where there is a delayed exacerbation known as Post Exertional Malaise (PEM). PEM is a key diagnostic symptom and can follow even minor physical or mental exertion. People with ME/CFS can also experience cognitive dysfunction (aka ‘brain fog) which causes problems with short term memory, concentration span, information processing etc; unrefreshing sleep and orthostatic intolerance (difficulty in maintaining an upright posture).
To download the ME/CFS guide for primary care infographic click HERE
Using our medical education budget, the ME Association can send free medical education resources to healthcare professionals who join mailing list. If you’d like to sign up to receive the ME/CFS/PVFS Clinical & Research Guide 2022 Edition (also known as the 'Purple Book') and the quarterly ME Medical magazine, please Sign up HERE
You can download and read the poster guide PDF HERE