How do doctors recognise ME/CFS? The IOM 2015 and NICE 2021 criteria
There is no blood test for ME/CFS, so doctors recognise it from sets of criteria that experts have rewritten several times.
How do doctors recognise ME/CFS? Not with a test, because there is none. NICE, the UK's guidance body on health care, says that there is currently no diagnostic test for ME/CFS and that it is recognised on clinical grounds alone. Instead, doctors compare a person's symptoms with a written set of criteria. This lesson describes how those criteria are written; it is not a way to diagnose anyone, and only a doctor can do that.
The two best-known recent sets are the US Institute of Medicine (IOM) criteria of 2015 and the NICE criteria of 2021. In 2021 NICE revised its criteria based on the IOM criteria. Both put , a worsening after small efforts, at the centre. NICE's list for suspecting ME/CFS requires debilitating fatigue that is worsened by activity and not significantly relieved by rest, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties, sometimes described as "brain fog".
Doctors also check that something else is not the cause. Blood and urine tests are used to rule out other conditions that could explain the symptoms. NICE says to suspect ME/CFS after 6 weeks of symptoms in adults, or 4 weeks in children and young people, but a diagnosis can only be confirmed after 3 months of persistent symptoms.
Step 1: Suspect
Symptoms for 6 weeks in adults, 4 in children
Step 2: Rule out other causes
Blood and urine tests, examination
Step 3: Confirm
Only after 3 months of persistent symptoms
Why have so many sets of criteria existed? Because there are no confirmed for ME/CFS, it is not possible to say which set is the most accurate. They were all developed by expert .
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Recap
No test exists, so doctors recognise ME/CFS by criteria: fatigue, post-exertional malaise, unrefreshing sleep, cognitive problems, and other causes ruled out.
π‘ A trick to remember it Β· Think of a recipe with no taste test: experts agree the ingredients list, and the list can be rewritten as the evidence changes.
Surprising fact Β· Two recent sets, from the US IOM in 2015 and NICE in 2021, both put post-exertional malaise at the centre.
Sources (3)
No source, no claim. Every fact in this lesson (16 claims) cites at least one of these.
- [1]Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (NG206): Recommendations Β· NICE
- [2]Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness (Summary) Β· National Academies Press
- [3]Myalgic encephalomyelitis/chronic fatigue syndrome Β· Wikipedia