Myalgic encephalomyelitis (chronic fatigue syndrome)
This condition has two names and one abbreviation: ME/CFS. The second name is misleading, because everyone knows the word fatigue, and from the outside it…
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Medicines commonly prescribed for Myalgic encephalomyelitis (chronic fatigue syndrome)
For informational purposes only. Always consult a doctor before using any medicine.
Dosage form: TABLET, 50 mgActive substance: amitriptylineManufacturer: Neuraxpharm Spain S.L.Prescription requiredDosage form: TABLET, 50 mgActive substance: amitriptylineManufacturer: Tarbis Farma S.L.Prescription requiredDosage form: CAPSULE, 60 mgActive substance: duloxetineManufacturer: Eli Lilly Nederland B.V.Prescription required
This condition has two names and one abbreviation: ME/CFS. The second name is misleading, because everyone knows the word fatigue, and from the outside it sounds like someone who has not had enough sleep. The difference is fundamental. A healthy person recovers overnight; here rest does not restore anything, and something entirely ordinary — a shower, an hour with visitors, a walk to the shop — can turn into a week-long crash a day later. It is a long-term illness, its cause is still unknown, and it can affect anyone at any age, children included.
Tiredness that rest does not fix
People living with ME/CFS almost always say this tiredness is unlike anything they have known before. It has little to do with how much they did the day before, it does not lift after a weekend, and no amount of pushing through makes it budge. The usual description is a heaviness through the whole body, or a battery that drains faster than it can charge.
The second thing that matters is that it does not stay the same. There are better days and days when lifting your head off the pillow is hard. Because of that swing, people around often decide that someone "can manage sometimes and just does not want to at other times". It also produces the classic mistake made by patients themselves: using a good day to clear the backlog and then losing the whole week.
The crash after exertion is the key sign
This is what separates ME/CFS from other causes of long-lasting tiredness, and it is the first thing worth telling a doctor about.
It goes like this. You do something that used to be easy: a twenty-minute walk, an hour of conversation with visitors, sorting the post. At the time it may feel manageable. The deterioration does not arrive at once but several hours later or the next day, and it lasts for days, sometimes weeks. Everything returns together: exhaustion, pain, brain fog, chills, the sense of being wrung out.
Physical effort is not the only trigger. Mental work, a difficult conversation, bright light, noise, a journey, even sitting upright for a long time all count as exertion just as walking does. The delay makes it much harder: the link between cause and consequence is difficult to spot until you start writing things down.
What else goes wrong
Besides the exhaustion and the crashes, people with ME/CFS usually have some of the following:
- sleep that does not refresh: ten hours and still waking up wrecked; insomnia, a reversed day-night pattern and morning stiffness are all common;
- brain fog: harder to find the word, to hold on to something recent, to do two things at once; speech and reactions slow down;
- pain in muscles, joints and head, often with no swelling or redness;
- a sore throat and neck glands that are tender to touch;
- light-headedness, greying vision and a racing heart on standing up: the body copes badly with being upright;
- heightened sensitivity to light, sound, smells and touch;
- poorer tolerance of alcohol, of certain foods and of some medicines;
- swinging between feeling hot and cold when the temperature around changes.
The combination differs from person to person and shifts over time. Periods when things get markedly worse are called relapses, and they can be set off by an infection, by stress, by a flight, or simply by taking on too much.
How the diagnosis is made and what has to be ruled out
There is no test that shows ME/CFS. The diagnosis rests on the description of the symptoms and on the fact that other explanations have been checked and not confirmed. Usually the disabling exhaustion, the crash after exertion, the unrefreshing sleep and the thinking difficulties have to have lasted at least three months and to limit ordinary life noticeably.
Before settling on this diagnosis, the doctor goes through the conditions that look similar but are treated in a completely different way:
- anaemia and deficiency of iron, vitamin B12 or vitamin D;
- an underactive thyroid;
- diabetes and other metabolic disorders;
- coeliac disease;
- liver and kidney disease;
- sleep apnoea and other sleep disorders;
- depression and anxiety disorder, which can be a separate cause as well as a consequence;
- chronic infections, autoimmune and neurological diseases.
A separate word about the real reason for all this checking. Long-lasting tiredness is sometimes the opening of something that cannot be left alone: lymphoma and other blood cancers, adrenal insufficiency, myasthenia, multiple sclerosis, heart failure. What should raise concern is not the tiredness itself but what travels with it: losing weight without dieting, night sweats, a fever lasting weeks, enlarged firm lymph nodes, breathlessness, swollen ankles, darkening of the skin, double vision, weakness in one specific arm or leg. Those signs call for investigation rather than for putting everything down to ME/CFS.
The road to a diagnosis is often long. That does not mean sitting and waiting: work on sleep, on pain and on pacing can start well before the name is finally written in the notes.
How severe it can get
The range is enormous, and both the patient and the people around them should understand it.
- Mild: the person manages their own care and often keeps working or studying, but there is nothing left for anything else and weekends go on recovering.
- Moderate: work and study are usually interrupted, mobility is reduced, rest is needed during the day and night-time sleep is disturbed.
- Severe: only the simplest household tasks are possible, the person is mostly at home or in bed, needs help, and finds light and sound intolerable.
- Very severe: permanently in bed, entirely dependent on carers, sometimes with difficulty swallowing and eating.
Severe forms affect roughly a quarter of patients, and these are exactly the people who most often drop out of medical view, simply because they cannot get to an appointment. Here both a home visit and specialist involvement are needed.
What genuinely helps
There is still no medicine that removes the cause. There is an approach that changes quality of life appreciably, and there are things that have now been dropped.
The foundation is pacing. The idea is simple: work out how much you have to spend in a day and try not to go beyond it even on good days, because the bill arrives tomorrow. In practice that means a diary of activity and how you felt, tasks broken into short stretches with breaks, resting before the tiredness arrives rather than after, and an agreed right to cancel plans. It is better learnt alongside a doctor or a rehabilitation specialist who has worked with such patients than on your own.
Whatever gets in the way most is dealt with separately: sleep, pain, light-headedness on standing. Ordinary painkillers are used here, and sometimes low-dose antidepressants prescribed for pain and sleep rather than for mood. The particular drug is chosen by the doctor.
Now for what is best avoided.
- Programmes based on a planned week-by-week increase in exercise, once offered to almost everyone, have been removed from guidance: in some people they made things worse. Movement is possible and necessary, but guided by how you feel and without any obligation to add more each week.
- Psychological therapy helps in coping with life under new conditions, but it does not treat the illness itself, and presenting it as a cure is wrong.
- Strict exclusion diets and assortments of supplements — B vitamins, vitamin C, magnesium, coenzyme preparations — have no convincing evidence behind them. Eating regularly, on the other hand, does matter: in severe illness, loss of appetite and difficulty chewing make undernutrition a real risk, and then a dietitian is needed.
- Complete rest with no movement at all is not the answer either: it adds problems of its own, from pressure sores to blood clots, if someone barely gets up.
When help is needed urgently
ME/CFS itself does not call for emergency measures, but similar complaints can have another cause behind them. Call the emergency services or go to an emergency department if any of the following appear:
- fainting with a blow to the head, seizures, confusion;
- sudden weakness or numbness in an arm, a leg or one side of the face, a drooping face, disturbed speech;
- chest pain or marked breathlessness at rest;
- a temperature above 38 °C that persists, especially with shivering and severe weakness;
- inability to drink and swallow, signs of dehydration such as a dry tongue, passing little urine and dark urine;
- thoughts of harming yourself.
Not as an emergency, but without putting it off either, see a doctor about rapid weight loss, a persistently raised temperature, enlarged lymph nodes, and any new symptom that does not fit the pattern you have come to know.
Online consultation
A remote appointment suits this condition better than many others: the journey to a clinic and the wait in the queue are quite enough on their own to trigger a crash. Over video the doctor can work out whether the complaints fit the picture of ME/CFS, draw up the list of tests that rule out other causes, and go through results you already have. They can help build a pacing routine, discuss what to do about sleep and pain, and say what information is worth gathering before a face-to-face visit, for instance an activity diary covering two or three weeks. Another frequent reason is wording about limitations for work or study. The signs in the list above are not assessed remotely: they need emergency care straight away.
This material is for information only and does not replace medical advice.
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