ME/CFS: The care you should expect

The NICE Guideline on ME/CFS: Diagnosis and Management [NG 206] Published 29 October 2021

• Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) is a long-term condition that affects about 250,000 people in the UK. It can cause many different symptoms, which can be triggered or worsened by any kind of effort or activity.
• Symptoms include flu-like malaise, sleep difficulties, brain fog and a profound fatigue that is unlike normal tiredness. People may also experience chronic pain, headaches, nausea, digestive problems, and sensitivity to light, sound and other stimuli. Symptoms come and go and can change or worsen with little warning, causing distress and disrupting peoples lives.
• ME/CFS is different for everyone. It can range from a mild illness to a severely disabling one that leaves some people housebound or bedbound. Because it can look like many other illnesses, people often face uncertainty and delays in diagnosis. There are options that can help people manage their ME/CFS, but a therapy that helps one person may cause harm to another, so a carefully tailored plan and specialist advice is always needed.

We have updated the 2007 version of this guideline using the best available research and working with people who are affected by ME/CFS and professionals who treat and support them. We want it to make a difference to all adults, children and young people with ME/CFS and their families and carers by:

• helping doctors recognise when someones symptoms could be ME/CFS.
• making it faster to get support once ME/CFS is suspected so people dont have to wait for help while other conditions are ruled out.
• making sure people with ME/CFS have a confirmed diagnosis at 3 months.
• helping everyone with ME/CFS get specialist support and care designed around their own particular needs.
• making services more flexible to help people with ME/CFS get the care they need for example by making home visits, offering shorter or longer appointments and planning any hospital stays around their needs.

If you can’t understand the information you are given, tell your healthcare professional.

More information

• Download the Full NICE Guideline on ME/CFS as a PDF.
• Visit the NHS website about ME/CFS.
• To share an experience of the care you have received, contact your local Healthwatch or email the ME Association: feedback@meassociation.org.uk.
• You can access support and information by getting in touch with the ME Association's ME Connect service.