Prevalance figures for ME/CFS have recently been subject to debate and upgrade based on ME-Research UK funded researcher’s work. 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. Although it is important to remember that ME/CFS is a symptom-based clinical diagnosis not a mechanistic one but it is clear that there is a high degree of shared pathophysiology between ME/CFS and long COVID, and the two diagnostic labels are not mutually exclusive.
Many more people may/will or could potentially be diagnosed with ME/CFS following a known SARS‑CoV‑2 viral infection. Undoubtedly, those with a known, unknown or non-divulged SARS‑CoV‑2 infection form a sizeable, and growing, section of the poplulation.
Numerous articles have been written on the intersections of ME/CFS and long-COVID but, little is known about the basic mechanisms of whether or to what extent GPs record cases where a person has a known SARS‑CoV‑2 viral infection with ME/CFS. The raw data for prevalence may not be being captured to the detriment of healthcare planning, research funding, and patient support.
It has already been noted that specificity is lacking in NHS data as medical records record a diagnosis for G93.3 – the medical code for “post viral fatigue syndrome” (ICD-10: G93.3), the diagnostic code which, according to the authors of the leading prevalence study, “best reflects ME/CFS symptoms” – rather than ME/CFS specifically, and it is possible that not all those with a G93.3 diagnosis would meet more stringent ME/CFS diagnostic criteria.
Oddly, a parliamentary question by Bobby Dean MP (UIN 72977) alludes to a deeper issue. Mr Dean’s question was simple –
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that referrals for ME/CFS are not rejected solely on the basis of a long covid diagnosis being mentioned in GP notes.
Indeed, Ashley Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention’s answer was centred around better healthcare professional education on ME/CFS and that commissioning of ‘post-viral services’ is the responsibility of local NHS integrated care boards.
Are people being denied referrals for ME/CFS specialist services (such as they are) on the basis of a long-COVID diagnosis especially now that increasingly, such services are being remodelled as ‘post-viral services’ and are not ME/CFS specific? Will this preclude NHS data recording prevalence data for both ME/CFS and long-COVID accurately?
A train of thought was that the NICE guideline on ME/CFS could limit the numbers of those diagnosed with long-COVID receiving an ME/CFS diagnosis as clinicians are instructed by the guideline to diagnose ME/CFS only where the symptoms which are being presented “are not explained by another condition.” Was this being or could it be interpreted to include long-COVID as an exclusionary condition?
So, a simple question which leads to more complex conundra but, as yet, no answers.
