Under the Freedom of Information Act (FOIA), a law which allows members of the public to ask to see information held by public authorities, ME Research UK recently contacted the Department of Health and Social Care (DHSC) for information relating to the following:
- What guidance, formal or otherwise is there for use of a particular SNOMED code in relation to recording cases of long COVID.
- Under which SNOMED Code is long COVID coded to and at which level of care is it used/mandated?
- Is there a diagnostic code for long COVID being used in clinical practice currently that is different to G93.3 for ‘post viral fatigue syndrome’ – if so, what is the code and at which level of care is it used?
- Is there data on whether a long COVID diagnosis excludes those who have a pre-existing ME/CFS diagnosis at any point before infection with SARS-CoV-2?
- For the past 5 individual years what are the numbers of patients to whom a G93.3 code for ‘post viral fatigue syndrome’ has been allocated across NHS England?
- What, if any, guidance (formal or otherwise) is there to healthcare professionals to guide diagnosis to someone in 2025 who:
- Presented with ongoing symptoms following an infection which matched the symptoms of COVID-19, but the case was not confirmed?
- Presented with symptoms matching both ME/CFS and long COVID, but there had been no known initial infection or illness.
Regrettably, the DHSC does not hold the information requested, and advised ME Research UK to contact NICE, NHS England, and as health is a devolved issue, the relevant devolved authorities. ME Research UK has now done this and is awaiting their response.
Why is this information important?
As was commented upon when ME Research UK reported on Bobby Dean MP‘s parliamentary question, (UIN 72977) on whether those with long COVID on their medical records were being denied referrals to ME/CFS clinics, the accurate recording of diseases is vital if services are to improve. Prevalence figures for ME/CFS have recently been subject to debate and upgrade based on ME-Research UK funded researcher’s work but, debate will be ongoing especially in light of the numbers of people who either are, or could be, diagnosed with ME/CFS due to the high overlap between symptoms of long-COVID and those of ME/CFS. Until we know how people are being diagnosed and with what, prevalence rates will be floundering on being based on the closest but not exact figures and that serves no-one. If anything, prevalence rates for long-COVID will be far harder to gauge.
When considering information concerning groups of people with ME/CFS and those with long COVID, it is important to remember that ME/CFS is a symptom-based clinical diagnosis not a mechanistic one. It is clear there is a high degree of shared pathophysiology between ME/CFS and long COVID, and the two diagnostic labels are not mutually exclusive.
More Information
ME Research UK was also provided with the following information, which is outside the scope of the FOIA request, on a discretionary basis.
- “On long-term effects of COVID, NICE published Overview | COVID-19 rapid guideline: managing the long-term effects of COVID-19 | Guidance | NICE and Long-term effects of coronavirus (long COVID) | Health topics A to Z | CKS | NICE.
- A post-COVID-19 syndrome diagnostic pathway, criteria for referral to service, and separate adult, children’s and young people’s, pathways are outlined in NHS England’s Commissioning Guidance, to help achieve consistency of delivery and patient experience. The full guidance document can be found at the following link: NHS England » Commissioning guidance for Post COVID services for adults, children, and young people.
- On ME/CFS, NICE published Overview | Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management | Guidance | NICE and Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) | Health topics A to Z | CKS | NICE.
- NHS England, in collaboration with patient groups and DHSC, has been developing an e-learning programme on ME/CFS for healthcare professionals with the aim of supporting staff to be able to provide better care and improve patient outcomes. Sessions one and two of the e-learning programme, are now available at this link: Myalgic Encephalomyelitis or chronic fatigue syndrome (ME/CFS) eLearning – eLearning for healthcare. The third session, focusing on severe ME/CFS, is currently being finalised and will be launched later this year.”
