Prevalence of M.E. or ‘M.E.-Like Illness’

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Hi,

I have a fuzzy brain this afternoon and whilst attempting to get a few ideas down on paper (email) to sort M.E. awareness artwork, I used Gemini (AI) to see if I could come up with a prevalence of M.E. in my hometown of Portsmouth. The M.E. Awareness Month poster will be displayed in a local supermarket so I wanted to add a local dimension to it.

The following AI results show what an absolute mess it can be when trying to establish how many people have M.E. or an ‘M.E.’-like illness’ or ‘meet M.E. criteria’. There are far too many ‘these research papers state XYZ but we have to consider mis or under-diagnosis’ or ‘Is M.E-like Long COVID actually M.E?’ (I believe that yes it is. If a person meets M.E criteria they have M.E irrespective of the ‘trigger’.). Now that COVID19 testing has dramatically declined I believe (after having MANY conversations with NHS staff) many have gone from infection to an M.E. diagnosis bypassing Long COVID altogether. This is another variable, we had a period of being able to assume that around 50% of Long COVID cases still sick at the one year point could be included in M.E. prevalence statistics. In April 2025, I strongly believe that many more COVID19-induced cases go straight to M.E and bypass Long COVID. The days of research helping us to understand that the exclusive M.E. ‘club’ gained 9,000 new members (whether diagnosed or not) are long gone.

Take a look at what AI came up with – warning – it’s messy!

My M.E-addled brain wrote this question –

How many people have M.E in Portsmouth UK, if 1.25 million have the disease nationally and the population of Portsmouth stands at 210,300 (ONS). What is the prevalence i.e. 1 in ? have M.E

Here’s the answer!

Based on the national prevalence of 1.25 million people in the UK having M.E. and the population of Portsmouth, we can estimate the number of people with M.E. in Portsmouth.

  1. Calculate the prevalence rate:
  • Prevalence rate = (Number of people with M.E. in the UK) / (Total UK population)
  • While the exact current UK population is dynamic, we can use an approximate figure of 67 million for this calculation.
  • Prevalence rate ≈ 1,250,000 / 67,000,000 ≈ 0.0187 or 1.87%

However, it’s important to note that different studies provide varying prevalence rates for M.E. in the UK, ranging from around 0.2% to 0.6% in some more recent estimates, and potentially higher if including long COVID cases with M.E.-like symptoms. The 1.25 million figure you mentioned likely includes those with long COVID experiencing M.E.-like symptoms.

Let’s use the 1.87% prevalence rate based on your figure of 1.25 million for this estimation.

  1. Estimate the number of people with M.E. in Portsmouth:
  • Population of Portsmouth ≈ 210,300 (based on mid-2023 ONS estimate)
  • Estimated number of people with M.E. in Portsmouth = Prevalence rate × Population of Portsmouth
  • Estimated number ≈ 0.0187 × 210,300 ≈ 3,932.61

Therefore, based on your figure of 1.25 million nationally, it is estimated that approximately 3,933 people in Portsmouth may have M.E.

  1. Calculate the prevalence as 1 in ?:

To find the “1 in ?” prevalence, we take the inverse of the prevalence rate:

  • 1 / 0.0187 ≈ 53.48

This suggests that approximately 1 in 53 people in Portsmouth may have M.E., based on the assumption that the national prevalence rate applies uniformly to the local population.

Important Considerations:

  • Uniform Distribution: This calculation assumes that the prevalence of M.E. is uniformly distributed across the UK, which may not be entirely accurate. Local environmental factors or other demographic variations could influence the actual prevalence in Portsmouth.
  • Diagnostic Rates: The number of diagnosed cases in Portsmouth might be lower due to underdiagnosis or misdiagnosis, a known issue with M.E. nationally.
  • Long COVID Impact: The increased prevalence you mentioned includes COVID-19 triggered cases. The distribution of long COVID and subsequent M.E. may vary regionally.
  • Varying Prevalence Estimates: As noted earlier, different studies give different national prevalence rates for M.E. If we were to use a lower national prevalence rate (e.g., 0.45% based on some research for ME/CFS specifically, excluding the long COVID overlap in your figure), the estimated number in Portsmouth and the “1 in ?” figure would be significantly lower.

For instance, using a 0.45% prevalence rate:

  • Estimated number in Portsmouth ≈ 0.0045 × 210,300 ≈ 946.35 (approximately 946 people)
  • “1 in ?” prevalence ≈ 1 / 0.0045 ≈ 222

Therefore, the prevalence could range significantly depending on the actual prevalence rate of M.E. (including long COVID-related cases) in the UK. Your figure of 1.25 million suggests a higher prevalence due to the inclusion of long COVID cases with M.E.-like symptoms.

THIS is why we need a biomarker.

Establishing the prevalence isn’t the most important question to be answered by research in 2025, however, it links to many important statistics that impact the care and research funding we receive.

  • If we don’t know the prevalence how can we claim research funding is not equitable with other comparable diseases and how much it is ‘out’?
  • If we don’t know the prevalence how can we claim to know how many people in our community will be negatively impacted by the UK Government’s latest PIP debacle?
  • If we don’t know the prevalence how can I explain the need for an M.E.-Friendly Hospital Charter to regional health organisations (ICSs / Health Boards / Health and Social Care Trusts) who want to know how many people will benefit? I have been asked ‘how many people have M.E. in our specific region?’ MANY times.
  • If we don’t know the prevalence how can we confidently state the economic burden to businesses and subsequently push for improved support for those physically able to work?

These are just a small sample to demonstrate why establishing an accurate prevalence is important in the wider context of M.E. and is particularly important in my world of M.E campaign work.

The cynic in me wonders if the vague, unconfirmed, ‘plucked out of thin air’ image of M.E. suits the Government of the day. It helps to keep us on the back foot. All major UK charities have different prevalence estimates on their websites. There is no consistency, which is surprising given they collaborate in various lobby groups and campaign work.

The 1.25 million estimate was published by the main UK charities in Summer 2023. I had been waiting for an updated prevalence estimate and the second I saw it published I ran with it. The new estimate came 2 weeks after I created this video, I wasn’t too far off the mark. The lack of an updated estimate had been causing me difficulties in conversations with various Government representatives and NHS managers who prefer to have concrete irrefutable data to reinforce what they are being told during online meetings.

Having a biomarker is just one hurdle, we also have to fix:

  • Coding on SNOMED (GP level). The Department for Health and Social Care (DHSC) *SHOULD* be able to run software to establish how many people have M.E. in England/UK. However, GPs (and other NHS staff) are incorrectly coding us on electronic medical systems (SNOMED) and so the DHSC is unable to do this and get accurate results. Yes, I have asked DHSC management this question.
  • Education levels amongst medical professionals about our disease – surely biomarker testing will only work if the GP knows there is a chance the person in front of them MAY have M.E!

Sorry this blog is fuzzy and waffly, maybe appropriately so as it matches the topic I am raising! People living with M.E. who follow Team Foggy should know ME Foggy Dog is continuing to state ‘1.25 million meet M.E. diagnostic criteria in the UK.’ in all NHS and Government meetings (even though that figure has likely risen since 2023!).

Love

Sally

and Foggy (OBVIOUSLY).

 

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