ME/CFS and Long COVID Fatigue: Help and Therapy in the UK

The NHS describes ME/CFS (myalgic encephalomyelitis, or chronic fatigue syndrome) as a long-term condition. Its four main symptoms are extreme tiredness that makes daily activities hard, sleep problems, problems with thinking, concentration and memory (brain fog), and symptoms getting worse after physical or mental activity, sometimes taking weeks to settle. This worsening is called post-exertional malaise. ME/CFS can affect anyone, including children. Source: NHS: ME/CFS.

The NHS says long COVID is when COVID-19 symptoms last longer than 12 weeks. Fatigue is the most common symptom, alongside shortness of breath, joint pain and aching muscles, and brain fog, and symptoms can get worse if you are stressed or have been more active. Source: NHS: long COVID. Because the symptoms overlap with many other illnesses, see a GP before assuming the cause.

The NHS says there is no specific test for ME/CFS: a GP asks about your symptoms and history, may arrange blood and urine tests, and rules out other conditions. NICE says ME/CFS should be suspected when the main symptoms have lasted at least 6 weeks in adults (4 weeks in children and young people), your usual activities are significantly reduced and nothing else explains them, and that the diagnosis is confirmed after 3 months. Adults are then referred to an ME/CFS specialist team; children and young people are first seen by a paediatrician. For long COVID the NHS says to see a GP, who may arrange tests and, in some areas, a post-COVID syndrome service. Sources: NICE guideline NG206, NHS: ME/CFS and NHS: long COVID.

There is no cure for either condition, but the NHS says treatment can help you manage symptoms. NICE describes the main approaches:

• Energy management. A way of using the energy you have without making symptoms worse, led by you with support from a health professional. NICE says it is not a cure, it covers physical, thinking, emotional and social activity, and activity is never automatically increased: it is held steady or adjusted up after a stable period, or down when symptoms are worse.
• Rest and sleep advice. NICE says rest periods are part of managing ME/CFS and that people should get personalised sleep advice.
• CBT, if you want it. The NHS lists CBT as a treatment. NICE says it should only be offered to support you in managing symptoms, never as a cure, and only if you choose it after discussing it. It should be delivered by someone trained and experienced in CBT for ME/CFS.
• Help with daily living and work or education. NICE includes aids and adaptations, and support with reasonable adjustments at work, school or college under the Equality Act 2010.

For long COVID, the NHS says your team may suggest fatigue management advice, physiotherapy for breathing and muscle pain, CBT for anxiety, depression and fatigue, and cognitive rehabilitation for memory and concentration. It also says not to start exercising again before talking to a GP or specialist.

NICE says people with ME/CFS should not be advised to exercise more, for example to go to the gym, outside a programme overseen by an ME/CFS specialist team, because it may worsen symptoms. It says not to offer graded exercise therapy, meaning a baseline followed by fixed incremental increases, or any therapy that treats activity or exercise as a cure. NICE also says not to offer the Lightning Process. If a physical activity programme is offered, it should be overseen by a physiotherapist in a specialist team and agreed with you. If anyone promises a cure, or pushes you to do more than you can manage, you can ask them to explain how that fits with the NICE guideline. Source: NICE NG206.

NICE says an ME/CFS specialist team is made up of a range of health professionals and may include physiotherapists, exercise physiologists, occupational therapists, and clinical or counselling psychologists. For this condition, different professions help in different ways:

• Occupational therapists help with pacing daily routines, work and study, and equipment or home changes; see finding an occupational therapist.
• Physiotherapists help with mobility, breathing and, where you want it, a carefully overseen activity plan; see finding a physiotherapist.
• Practitioner psychologists, counsellors and psychotherapists can support the emotional side of living with a long-term illness, including low mood and anxiety; CBT therapists can offer CBT if you choose it.
• Speech and language therapists can help if long COVID has affected your voice, speech or swallowing.

Ask any private practitioner whether they have worked with ME/CFS or long COVID, whether they follow the NICE guideline, and whether they will work at your pace, with shorter or online sessions if you need them. NICE says services should adapt the timing and length of appointments, and offer online, phone or home visits where needed.

Whoever you choose, check their register and ask about fees, session length and how you will review progress together. See questions to ask before you book and how much therapy costs. On Therapist Circle, each practitioner's registration is checked when they join, and their profile shows the register and number so you can check it yourself.

The NHS says the ME Association offers information and support and lists local support groups, and names Long COVID SOS as a charity for people with long COVID. NICE says you can ask your local council for a social care needs assessment if you need support at home, and that parents of children with ME/CFS can ask about an education, health and care (EHC) plan. If low mood is part of it, see help for depression and free and low-cost therapy.