ME/CFS is a long-term illness that is real, physical and often misunderstood. Many people wait a long time for a diagnosis, and many are told to "just rest" or "push through". Neither is helpful advice.
In this post I explain what ME/CFS is, how it is recognised, and what can support you day to day. I am an osteopath in London, so I also explain where my own work fits, and where it does not.
What are the symptoms?
ME/CFS (myalgic encephalomyelitis, also called chronic fatigue syndrome) is far more than feeling tired. The fatigue is persistent, does not ease with rest, and limits what you can do.
The features doctors look for include:
Post-exertional malaise (PEM): symptoms that get disproportionately worse after physical, mental or emotional effort, often a day or two later, and can last days or longer.
Unrefreshing sleep: waking unrested however long you slept.
Cognitive difficulties: often called "brain fog", such as trouble concentrating or finding words.
Problems with standing upright: feeling dizzy, faint or unwell when upright (orthostatic intolerance).
Many people also have pain, headaches, a sore throat, or sensitivity to light and sound. Symptoms vary from person to person, and from one day to the next.
How is it diagnosed?
There is no single test for ME/CFS. Your GP or a specialist will take a detailed history, examine you, and arrange tests to rule out other causes of your symptoms, such as thyroid problems, anaemia or sleep disorders.
NICE guidance says ME/CFS should be considered once symptoms have lasted around six weeks in an adult, with a diagnosis confirmed after about three months. It can take time, and it is reasonable to ask for a referral to a specialist ME/CFS service if you are not getting answers.
What can help?
There is currently no cure for ME/CFS. Care focuses on managing symptoms and protecting your energy.
Energy management (pacing): planning and balancing activity and rest so you stay within your limits and avoid triggering post-exertional malaise. NICE recommends this, and it is supportive rather than curative.
Symptom management: your GP or specialist may suggest medication for specific problems such as pain, sleep or low mood.
Sleep and rest support: practical routines that make rest as restorative as possible.
Support for other conditions: treating related problems can ease the overall load.
What to avoid: NICE advises against graded exercise therapy and against "pushing through", because this can make symptoms worse.
What helps varies from person to person, so any plan should be shaped around you and agreed with your healthcare team.
Where does osteopathy fit?
I am a licensed practitioner of the Perrin Technique, a gentle osteopathic approach developed by Dr Raymond Perrin. It combines a physical assessment with soft, hands-on techniques to the spine, chest and head, and rests on a theory that poor drainage of fluid around the brain and spinal cord may play a part in ME/CFS.
That theory is still being tested, and the research so far is early and small. The Perrin Technique is not part of NICE's recommendations for ME/CFS. Some people choose to explore it alongside pacing and medical care, and I always treat it as an addition, never a replacement. You can read more, including what the studies do and do not show, on my Perrin Technique page.
When to see your GP
See your GP if you have fatigue that does not improve with rest, or symptoms that get clearly worse after activity, and especially if it has lasted several weeks. Ask them to consider ME/CFS and to rule out other causes.
Seek medical advice promptly if you have new or worrying symptoms such as unexplained weight loss, fever, chest pain or breathlessness. Do not assume they are part of ME/CFS.
FAQs
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Yes. It is a recognised long-term medical condition, and NICE has published guidance on diagnosing and managing it.
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They overlap, and many people with Long Covid have post-exertional malaise, but they are not the same diagnosis.
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There is currently no cure. Care focuses on managing symptoms and avoiding crashes.
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NICE advises against graded exercise therapy for ME/CFS. Gentle activity should be guided by your own limits, ideally with advice from a clinician who understands the condition.
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I cannot promise a particular outcome. Some people find a gentle, paced hands-on approach a useful addition to their care. I explain what is known on my Perrin Technique page.
References
National Institute for Health and Care Excellence. ME/CFS: diagnosis and management (NG206). 2021. nice.org.uk/guidance/ng206
Action for M.E. What is ME? Symptoms
Hives L, et al. BMJ Open. 2017;7(11):e017521. doi:10.1136/bmjopen-2017-017521
