Images of research to illustrate the weekly research roundup

ME/CFS Research Published 30 January – 5 February 2024

The weekly research round-up includes recent publications about ME/CFS and Long Covid. We highlight studies that have particularly caught our attention.


The ME Association maintains a comprehensive index of published research on ME/CFS and Long Covid that is free to use and updated weekly.

Audio Commentary by Dr Katrina Pears

After the boom in research last week, it’s been a quieter week with three new ME/CFS studies and twenty-three new Long Covid studies.

We have highlighted one of the ME/CFS studies in more detail below:

Paper one (1) is preprint (meaning it has not been peer-reviewed and the science verified) which looks into the unequal access to obtaining a ME/CFS diagnosis in England.

This study reviewed data routinely recorded by NHS England, where the code ICD-10 (International Classification of Diseases) is recorded which best reflect symptoms, this was also linked to age, gender and ethnicity.

The study found:

  • Between April 1989 and October 2023, 100,055 people in England had been diagnosed with ME/CFS.
  • Of these, 79,445 were females and 20,590 males, a female-to-male ratio of 3.88:1.
  • Prevalence varied widely across the 42 NHS Care Boards: 0.086%-0.82% for females and 0.024%-0.21% for males. 
  • Cornwall and the Isles of Scilly had the highest prevalence for each gender, and North West or North East London the lowest for females or males, respectively.
  • ME/CFS prevalence varied 1.5-fold by deprivation assessed by the Index of Multiple Deprivation (IMD), with ME/CFS prevalence being the lowest in the three most deprived areas.
  • Point prevalence of ME/CFS varied greatly across lifespan, peaking at about 50 years of age for females and over a decade later for males.
  • In an individuals’ fourth and fifth decades the F/M ratio peaked at an exceptionally large value, approximately 6-to-1. 
  • Age at diagnosis was seen to be highly variable, especially in paediatric cases, with much highly prevalence seen in other countries, which highlights the limited services available.
  • White individuals were approximately 5-fold more likely to be diagnosed with ME/CFS than others; black, Asian or Chinese ethnicities are associated with particularly low rates of ME/CFS diagnoses.
  • ME/CFS prevalence of other-than-white British individuals was between one-tenth and one-third that for white British. Those with Chinese, Asian/Asian British or black/black British ethnicity were 11%, 11%-19%, or 10%-35%, respectively, less likely to be diagnosed with ME/CFS.
  • The ethnicity bias is stronger than for other common diseases, such as fibromyalgia and clinical depression.
  • Among active English GP practices, 176 (3%) had no registered ME/CFS patients.
  • Eight NHS Care Boards (19%) each contained fewer than 8 other-than-white individuals, despite registers containing a total of 293,770 other-than-white patients.
  • Those who are disproportionately undiagnosed with ME/CFS are other-than-white ethnic groups, older females (>60y), older males (>80y), and people living in areas of multiple deprivation.
  • The lifetime prevalence of ME/CFS for English females and males may be as high as 0.92% and 0.25%, respectively, or approximately 390,000 UK individuals overall.

The takeaway message is: ME/CFS diagnosis in England is highest among older, white females, and lowest among younger other-than-white males; the variation is 50-fold between these three categories.

This study gives an improved estimate of the prevalence of ME/CFS (with the standard value usually stating over 250,000, a 57% increase). The study also gives an accurate assessment of the socioeconomic and disease burden of ME/CFS.

This is definitely a much needed study, with very few previous studies being conducted that look at ethnicity. Results also highlight the huge range in service provision over England (as the range in diagnosis rates cannot be explained by ethnicity alone), and hopefully this information will help to direct much needed funding to these areas. Furthermore, this is the larger study to date in the UK looking at prevalence, by over two orders of magnitude.

However, it is restricted by the results being dependent on ME/CFS being recorded under the correct code and it used data from NHS England only, therefore does not report on UK-wide prevalence.

ME/CFS Research References

  1. Unequal access to diagnosis of myalgic encephalomyelitis in England
  2. Immune cell exhaustion, dysfunction, and metabolism in myalgic encephalomyelitis/chronic fatigue syndrome
  3. Chronic fatigue syndrome and its response to the use of a multimodal antidepressant

Long-COVID Research References

  1. A mid‑pandemic night's dream: Melatonin, from harbinger of anti‑inflammation to mitochondrial savior in acute and long COVID‑19 (Review)
  2. Low-dose naltrexone and NAD+ for the treatment of patients with persistent fatigue symptoms after COVID-19
  3. Brain FADE syndrome: the final common pathway of chronic inflammation in neurological disease
  4. The relationship between performance validity testing, external incentives, and cognitive functioning in long COVID
  5. Patient Experiences Navigating Care Coordination For Long COVID: A Qualitative Study
  6. Association of vaccine status, reinfections, and risk factors with Long COVID syndrome
  7. Long COVID-19 and primary care: Challenges, management and recommendations
  8. Association of risk factors with Long COVID- A Systematic Review and Meta-Analysis
  9. Role of Ferroptosis in the Progression of COVID-19 and the Development of Long COVID
  10. Association of Long COVID with mental health disorders: a retrospective cohort study using real-world data from the USA
  11. Capillary rarefication as a possible cause of long-COVID syndrome
  12. Event rates and incidence of post-COVID-19 condition in hospitalised SARS-CoV-2 positive children and young people and controls across different pandemic waves: exposure-stratified prospective cohort study in Moscow (StopCOVID)
  13. Long COVID is associated with severe cognitive slowing: a multicentre cross-sectional study
  14. Assessing the effect of selective serotonin reuptake inhibitors in the prevention of post-acute sequelae of COVID-19
  15. Early immune factors associated with the development of post-acute sequelae of SARS-CoV-2 infection in hospitalized and non-hospitalized individuals
  16. How does post COVID differ from other post-viral conditions in childhood and adolescence (0–20 years old)? A systematic review
  17. Predictors of non-recovery from fatigue and cognitive deficits after COVID-19: a prospective, longitudinal, population-based study
  18. Association of vaccine status, reinfections, and risk factors with Long COVID syndrome
  19. Long Covid: A Syndemics Approach to Understanding and Response
  20. A lifestyle adjustments program in long COVID-19 improves symptomatic severity and quality of life. A randomized control trial
  21. Does Pre-existing Diabetes Correlate with Long COVID-19 in Europe? Evidence from the Analysis of the Survey of Health, Ageing and Retirement in Europe’s Corona Surveys
  22. Effect of pulmonary rehabilitation on exercise capacity, dyspnea, fatigue and peripheral muscle strength in patients with post-COVID-19 syndrome: A systematic review and meta-analysis
  23. Unraveling Links between Chronic Inflammation and Long COVID: Workshop Report

Dr Katrina Pears,
Research Correspondent.
The ME Association.

Dr Katrina Pears - MEA Research Correspondent
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