Preprint Unequal access to diagnosis of myalgic encephalomyelitis in England, 2024, Ponting and Samms

Unequal access to diagnosis of myalgic encephalomyelitis in England
Chris P Ponting; Gemma L Samms

People with Myalgic Encephalomyelitis (ME/CFS; sometimes referred to as chronic fatigue syndrome) experience very poor health-related quality of life and only rarely recover. ME/CFS has no curative treatment and no single diagnostic test. Public health and policy decisions relevant to ME/CFS require knowledge of its prevalence and barriers to diagnosis. However, people with ME/CFS report lengthy diagnostic delays and widespread misunderstanding of their symptoms. Published prevalence estimates vary greatly by country, gender, age and ethnicity.

Hospital Episode Statistics data is routinely collected by the NHS in England together with patient age, gender and ethnicity. This data, downloaded from the Feasibility Self-Service of NHS DigiTrials, was used to stratify individuals with the ICD-10 code that best reflects ME/CFS symptoms (G93.3; 'Postviral fatigue syndrome') according to their age, self-reported gender and ethnicity, General Practice and NHS England Integrated Care Board (ICB).

In all, 100,055 people in England had been diagnosed with ME/CFS (ICD-10:G93.3) between April 1 1989 and October 7 2023, 0.16% of all registered patients. Of these, 79,445 were females and 20,590 males, a female-to-male ratio of 3.88:1. Female relative to male prevalence peaked at about 6-to-1 in individuals' fourth and fifth decades of life. Prevalence varied widely across the 42 ICBs: 0.086%-0.82% for females and 0.024%-0.21% for males. 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. This ethnicity bias is stronger than for other common diseases. Among active English GP practices, 176 (3%) had no registered ME/CFS patients. Eight ICBs (19%) each contained fewer than 8 other-than-white individuals with a G93.3 code despite their 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. This improved estimate of ME/CFS prevalence allows more accurate assessment of the socioeconomic and disease burden imposed by ME/CFS.


Link | PDF (Preprint: MedRxiv)

 

Of course, "the ICD-10 code that best reflects ME/CFS symptoms" may not be, and probably isn't, the actual code used for every patient.

 

Can the Hospital Episode Statistics data be re-analysed to estimate the prevalence of different autoimmune diseases (or other conditions, Scheibenbogen claims Raynauds is more prevalent in ME/CFS patients) amongst those patients compared to the general population (a priori, to me, it might not seem like the best dataset to do that)?

 

Good question. A quick Google found this paper that looked at a cohort in the US, which says,

"Of the 19 constituent codes, we find 5 that meet our Bonferroni corrected significance threshold (see Supplementary Table 1). The only significant sub-code to D89 was D89.9 (immunodeficiency, unspecified). Four sub-codes were significant from G93. Of these, the most significant was G93.3 (postviral fatigue syndrome), which was 4.4 times more common in the post-COVID period than the pre-COVID period."

Identifying long-term effects of SARS-CoV-2 and their association with social determinants of health in a cohort of over one million COVID-19 survivors, 2022,
Mukherjee et al
Open access, https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-022-14806-1

 

https://www.meaction.net/2024/02/01...-update-prevalence-figures-based-on-new-data/

MEAction will now use 700000 as the prevalence for UK and Scotland although they note issues.

 

Maybe some. But I've seen a number of people reporting that according to their GP, they don't have Long Covid, they have depression, also they don't have any patient with Long Covid. So I guess they are all either not coded, or coded as depression, or who knows what else. And that probably explains why many GPs don't think that LC is a problem. And much of the growing "mental health crisis".

The only group of illness where what is happening to the patient has minimal significance compared to what the physician in the room happens to believe about it.

 

#MEA choosing to rely on the CDC study because it is the 'latest data' doesn't sound like the right call to me: we need credible estimates, and at 1.3% this is not: I think we would notice if 1 in 76 people had MEcfs.

The CDC data is suspect:
1. It asked people if a medic had told them they had ME or chronic fatigue syndrome. Yet we often hear that most in the US do not have a diagnosis so presumably, the 'real' prevalence rate is much higher.
2. The F:M sex ratio is low at about 1.9.
3. Crucially, the question asks people if they have been told they have ME or "chronic fatigue syndrome" - easily confused with plain chronic fatigue - which is far more common (up to 4%) and has a sex ratio <2.

The prevalence rate suggested by this new study (up to 0.92% female, 0.25% male, roughly 0.6% combined, seems more realistic.

 

This paper hasn't been peer-reviewed yet, but I'd like to make a few comments.

• I think this is the largest ME dataset in the world, with 100,000 people given a diagnostic code of G 93.3 (postal fatigue syndrome, the ICD code that most closely resembles ME, CFS).
• The F:M ratio of 3.9 isn't too far off the roughly 5:1 figure seen in many research studies (which, unlike this one, apply specific diagnostic criteria), and is much higher than is seen for chronic fatigue. That gives me some confidence that many of the subjects have MEcfs, rather than a generic diagnosis.
• A roughly 5x lower rate of diagnosis in other-than-white people is shockingly low even compared with underdiagnosis in other illnesses (fig 3a). There is evidence that, if anything, CFS is even more common in non–white groups.
• The 10–fold range in diagnostic rates across England is much bigger than can be explained by differences in the level of other-than-white populations. This strongly points to big differences in service provision/willingness to diagnose. I think this information should help advocacy for improving services by region, as well as by ethnicity.

Finally, it makes sense to me to assume that the highest rate (amongst white people) – for Cornwall – gives us the best estimate of true prevalence rates in England. Does this make sense to others as well?

 

Does anyone know why the areas with the highest prevalence are:
Norfolk & Suffolk,
Cornwall and the South West?

See Fig 1B below, prevalence by ICB (integrated care board - which doesn't align that well with NHS trusts), sex and white/other-than-white

Cornwall had Anthony Pinching, consultant immunologist, AfME medical advisor and NHS clinical lead for the South West. I think he retired in 2011. He was also deputy dean of the erstwhile Peninsula Medical School. I gather they currently work closely with patients.

 

In my province (unsure about the other ones) we are still at ICD-9 when it comes to coding. We are simply not counted by the health care system, and even less tracked through the years.

 

The South West might well be the influence of Crawley and crew, especially for the Bristol and Bath area.

 

Yes, especially for Bath and Bristol. I’m sure the local presence of Action for. ME is fact as well.

 

MEA research update summarises this study:
https://meassociation.org.uk/2024/02/me-cfs-research-published-30-january-5-february-2024/