ME/CFS (myalgic encephalomyelitis or encephalopathy/chronic fatigue syndrome) is a complex multisystem disease with a probable population prevalence of 0.2% to 0.4% (i.e.2 to 4 per 1000 people). However, the true figure could now be significantly higher, partly as a result of people developing ME/CFS after Covid-19 infection.
Many people experience a long delay in obtaining a formal diagnosis. A 2016 MEA website survey involving 656 respondents found that of those who were diagnosed by a doctor:
- Only 18% were diagnosed within six months of the onset of symptoms
- 15% waited between 7 and 12 months
- 17% waited between 13 and 24 months
- 26% waited between 2 and 5 years
- 19% waited more than 5 years
The ME Association invites you to complete our survey relating to diagnosis; looking at before and after the 2021 NICE Guideline on ME/CFS. We are conducting the survey to try to find out if:
- People are being diagnosed earlier
- More attention is being paid by doctors to make sure other possible causes of ME/CFS type symptoms are excluded
- People are being referred by GPs to an ME/CFS specialist service to ensure the diagnosis is correct and a care and management plan is prepared.
Update (27.03.25)
This survey is now closed. View the results of the survey here:
“Fatigue is a very common symptom and some people with chronic debilitating fatigue are being misdiagnosed with ME/CFS when they have another, sometimes perfectly treatable cause.”
Dr Charles Shepherd, Honorary Medical Adviser to the ME Association writes in the Diagnosing ME/CFS Booklet
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the 2018-2021 NICE guideline on ME/CFS committee,
Member of the 2002 Chief Medical Officer's Working Group on ME/CFS
The 2021 NICE guideline used the Institute of Medicine
(IoM) diagnostic criteria as the basis for creating their recommendation that a diagnosis of ME/CFS should be based on the presence of four out of five of the core symptoms that are included in the IoM diagnostic criteria. These are:
- Debilitating fatigue
- Post-exertional malaise
- Unrefreshing sleep
- Cognitive difficulties (also referred to as ‘Brain Fog’)
Source: https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#suspecting-mecfs
Differential Diagnoses
Examples of conditions that can be misdiagnosed as ME/CFS include:
- Addison’s disease
- Coeliac disease
- Depression
- Fibromyalgia
- Haemochromatosis
- Hepatitis C
- Hypothyroidism
- Malignancy
- Multiple Sclerosis
- Myasthenia gravis
- Narcolepsy
- Pituitary disease
- Primary biliary cirrhosis or cholangitis Q fever
- Primary sleep disorders such as sleep apnoea Rheumatic disease – e.g. Sjogren’s Syndrome Sarcoidosis
- Sjögren’s Syndrome
- Vitamin D deficiency
Although unlikely, it should be noted that the common conditions being checked for do sometimes co-exist with ME/CFS.
For more information, please see download the free comprehensive information booklet on diagnosing ME/CFS:
