Understanding symptom clusters, diagnosis and healthcare experiences in ME/CFS and long COVID: a cross-sectional survey in the UK, 2025, Mansoubi et

Wyva

Wyva

Senior Member (Voting Rights)
Full title: Understanding symptom clusters, diagnosis and healthcare experiences in myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a cross-sectional survey in the UK

Maedeh Mansoubi, Thomas Richards, Martine Ainsworth-Wells, Russell Fleming, Phaedra Leveridge, Charles Shepherd, Helen Dawes

Abstract

Objectives This study aims to provide an in-depth analysis of the symptoms, coexisting conditions and service utilisation among people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID. The major research questions include the clustering of symptoms, the relationship between key factors and diagnosis time, and the perceived impact of National Institute for Health and Care Excellence (NICE) guidelines on patient care.

Design Cross-sectional survey using secondary data analysis.

Setting Community-based primary care level across the UK, incorporating online survey participation.

Participants A total of 10 458 individuals responded to the survey, of which 8804 confirmed that they or a close friend/family member had ME/CFS or long COVID. The majority of respondents were female (83.4%), with participants from diverse regions of the UK.

Primary and secondary outcome measures Primary outcomes included prevalence and clustering of symptoms, time to diagnosis, and participant satisfaction with National Health Service (NHS) care, while secondary outcomes focused on symptom management strategies and the perceived effect of NICE guidelines.

Results Fatigue (88.2%), postexertional malaise (78.2%), cognitive dysfunction (88.4%), pain (87.6%) and sleep disturbances (88.2%) were the most commonly reported symptoms among participants with ME/CFS, with similar patterns observed in long COVID. Time to diagnosis for ME/CFS ranged widely, with 22.1% diagnosed within 1–2 years of symptom onset and 12.9% taking more than 10 years. Despite updated NICE guidelines, only 10.1% of participants reported a positive impact on care, and satisfaction with NHS services remained low (6.9% for ME/CFS and 14.4% for long COVID).

Conclusions ME/CFS and long COVID share overlapping but distinct symptom clusters, indicating common challenges in management. The findings highlight significant delays in diagnosis and low satisfaction with specialist services, suggesting a need for improved self-management resources and better-coordinated care across the NHS.


Open access: https://bmjopen.bmj.com/content/15/4/e094658
 
People with Long Covid who respond to a MEA 'Count ME In' survey probably aren't your average Long Covid patient.

Yeah, that's an atrocious satisfaction rate. I guess though, the people who did their online singing lesson and recovered in a few months (naturally or perhaps somehow helped by the clinic) probably mostly aren't lurking around the MEA ready to fill out the survey.
 
The paper said:
Despite updated NICE guidelines, only 10.1% of participants reported a positive impact on care, and satisfaction with NHS services remained low (6.9% for ME/CFS and 14.4% for long COVID).
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I'm sorry, but not explicitly mentioning that the guideline was loudly rejected by most medical authorities in the country, literally refused to implement or consider any of it, is propaganda. Lies and bullshit. Completely unacceptable. This needs to be pushed back, it's Big Brother level of rewriting the record.
We observed similar time to diagnosis in the first 12 months and in general for those diagnosed 3 years before (n=979) and after (n=743) the 2021 NICE guideline (figure 5, left).
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A key concern was the observed very poor times for referral for diagnosis, poor diagnosis times, poor referrals to specialist services and no significant improvements since the publication of the NICE guidelines.
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Because they were explicitly rejected and not implemented. Good grief people you have to take reality into account. Actually, no this is actually worse because it happened within the insulated ideological bubble of medicine and still they pretend that the reason why this is an ongoing problem did not happen.

Unless I missed it, but I could not find any mention of this, even in passing. What absurd propaganda.
 
Indeed, it is rather as if the NICE 2021 Guideline was just about getting rid of a few unwanted initials - GET, CBT.

The senior author is a professor rehab with a physio background and the first is interested in 'digital physio'. Again, I have the feeling MEA staff could use their time better.
 
Aims and objectives
To describe current practices and experiences of people with ME/CFS and with long COVID mapped to key NICE guidelines.
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I did not find any assessments of how the current practices maps to the guidelines when I searched for ‘guideline’. The word ‘practice’ is only mentioned in the method section, and never in the main body of the article.

IMO, the current version should not have passed peer review as a result. They have not done what they said they did (or would do).
 
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