Fiducia TogetherME/CFS
Also called Myalgic encephalomyelitis, Chronic fatigue syndrome
A serious, long-term condition defined by symptoms getting worse after exertion. Not tiredness, and not deconditioning.
Important: This page is general information, not medical advice, and it is not a diagnosis. If you are worried about your health or someone else's, speak to a GP, pharmacist, or call 111. In an emergency, call 999.
What it is
ME/CFS has been misunderstood so persistently that NICE rewrote its guideline in 2021 to correct it, withdrawing the recommendation for graded exercise therapy and stating clearly that this is not a psychological condition and cannot be cured by exercise.
The defining feature is post-exertional malaise: a disproportionate worsening of symptoms after physical, mental or emotional effort, often delayed by 12 to 48 hours and lasting days or weeks. That delay is why it is so easily missed and so easily disbelieved.
Around 250,000 people in the UK have it. About a quarter are severely affected, and some are housebound or bedbound for years.
Signs you might notice
Post-exertional malaise. This is the one that distinguishes ME/CFS from ordinary fatigue.
Debilitating fatigue that is not relieved by rest.
Unrefreshing sleep, and disturbed sleep patterns.
Cognitive difficulty: processing, memory, word-finding.
Orthostatic intolerance, pain, sore throat and tender glands, and sensitivity to light and noise.
How it can affect day-to-day life
Severely affected people are among the most neglected patients in the health service. Housebound, sometimes unable to tolerate light or sound, and frequently without any home visit from anybody.
Children with ME/CFS have been subject to safeguarding referrals for school absence, which is a specific and documented harm.
The pattern that traps people is push-and-crash: a good day gets used for everything postponed, and the next fortnight is lost.
Supporting someone well
Believe the person, and take post-exertional malaise seriously as a physiological event rather than a lack of confidence.
Pace within the energy envelope. Stop before the limit. Rest is planned and pre-emptive, not a reward for overdoing it.
Do not push graded exercise. NICE NG206 removed it for good reason, and fixed incremental programmes cause lasting harm in this condition.
Adapt the environment: reduce light, noise and demand, and accept that for severely affected people even conversation is exertion.
For children, get the school onto a reduced, flexible timetable in writing and challenge any absence process that treats illness as truancy.
Fiducia Life records activity, symptoms and sleep together, which is what makes an energy envelope visible: with a 24 to 48 hour delay between cause and effect, no one can work it out from memory.
Where to get help
Ask a GP for referral to an ME/CFS specialist service, and take NICE NG206 with you if graded exercise is suggested.
Action for ME and the ME Association both run information and support lines.
Ask specifically about home visits if the person cannot attend appointments. That is a reasonable adjustment, not a favour.
Tools we make that might help
These are our own products. We have put them here because they do something specific for this condition, not because every page needs a list.
Fiducia Life
Activity, symptoms and sleep recorded together, which is the only way an energy envelope becomes visible.
Last reviewed 2026-08-28 by Fiducia Together · Next review due 2027-08-28
Important: This page is general information, not medical advice, and it is not a diagnosis. If you are worried about your health or someone else's, speak to a GP, pharmacist, or call 111. In an emergency, call 999.