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ME/CFS Science

@mecfsskeptic.bsky.social

In-depth analysis of research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Formerly known as ME/CFS Skeptic. https://mecfsscience.org/

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Posts by ME/CFS Science (@mecfsskeptic.bsky.social)

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Who receives a diagnostic label for fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome? A study in the lifelines cohort Functional Somatic Syndrome (FSS) is characterized by persistent bothersome symptoms not fully explained by known medical abnormalities. FSS includes …

9) Link to the paper:

Tatten et al. 2026. Who receives a diagnostic label for fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome? A study in the lifelines cohort.

03.03.2026 09:04 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

8 ) A bit curious that depression and anxiety were associated with lower instead of higher odds of FSS diagnosis. The authors speculate that this may reflect diagnostic overshadowing: somatic symptoms of FSS might have been attributed to a psychiatric diagnosis.

03.03.2026 09:04 β€” πŸ‘ 5    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

7) Older age, smoking, and reporting a depressive or an anxiety disorder were associated with lower odds of receiving an FSS diagnostic label.

03.03.2026 09:04 β€” πŸ‘ 4    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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6) Female sex, having lower education levels, various comorbidities, higher healthcare use, and current employment were positively associated with getting a FSS diagnosis.

(see the odds ratios from multiple logistic regression analysis in table below)


03.03.2026 09:04 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

5) The rest of the paper looks at factors that differ between patients that received a diagnosis versus those that didn't. They not only looked at ME/CFS but at "Functional Somatic Syndrome (FSS)" which also includes fibromyalgia and irritable bowel syndrome.

03.03.2026 09:04 β€” πŸ‘ 4    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

4) The prevalence of ME/CFS in this cohort was 1.8% (2,793 out of 152,807 participants), which seems substantially higher than sound epidemiological estimates (which are usually below 1%).

03.03.2026 09:03 β€” πŸ‘ 5    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

3) So rather than a large number of people with CFS being undiagnosed, it could also be that this CFS Symptom Inventory selects a high number of false positives who don't actually have CFS.

03.03.2026 09:03 β€” πŸ‘ 5    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

2) A big caveat, however, is that cases were selected using a questionnaire (the CDC's CFS Symptom Inventory) not a clinical examination. Most diagnostic criteria for ME/CFS require a clinical examination to assess symptoms and exclude alternative causes.

03.03.2026 09:03 β€” πŸ‘ 5    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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1) A new paper from the Lifelines cohort reports that only 14% of people with ME/CFS received a formal diagnosis.

03.03.2026 09:03 β€” πŸ‘ 14    πŸ” 2    πŸ’¬ 1    πŸ“Œ 0

7) Link to the paper:

Tuzzolino. et al. 2026. Identifying post-exertional malaise subtypes: Differentiating physical and mental PEM manifestations
journals.sagepub.com...

02.03.2026 08:50 β€” πŸ‘ 8    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

6) To digg deeper into PEM manifestations, I think we need better questions than those from the DePaul symptom questionnaire - these focus too much on fatigue after exertion and fatiguability, not on becoming sicker much later after the (over)exertion.

02.03.2026 08:50 β€” πŸ‘ 16    πŸ” 0    πŸ’¬ 2    πŸ“Œ 0

5) The paper claims that "these results indicate distinct PEM subtypes" but I think it looks like the opposite: the difference between groups were not that clear and most (almost 80%) of patients fell in the group with both physical and mental PEM.

02.03.2026 08:50 β€” πŸ‘ 11    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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4) There was also data on how well patients managed to stay inside their energy envelope using a ratio of estimated expended and available energy * 100. Those under 94 were considered under-exerted, those above 119 over-exerted.

02.03.2026 08:49 β€” πŸ‘ 6    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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3) Turns out the vast majority (78%) of ME/CFS patients had both mental and physical PEM.

Only 5% fell in the mental PEM only subgroup. This tended to have more males. Otherwise the differences between groups do not look that big.

02.03.2026 08:49 β€” πŸ‘ 15    πŸ” 3    πŸ’¬ 1    πŸ“Œ 0

2) A score of 2 out 4 for both severity and frequency was needed for the following:

- "Mentally tired after the slightest effort", was used for mental PEM.
- β€œMinimum exercise makes you physically tired", was used for physical PEM.

02.03.2026 08:49 β€” πŸ‘ 9    πŸ” 0    πŸ’¬ 3    πŸ“Œ 0
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1) A large study of ca. 2000 ME/CFS patients analyzed post-exertional malaise (PEM) scores and differences between ME/CFS subgroups that mostly experience physical or mental PEM.

This is from Lenny Jason's group in Chicago.

02.03.2026 08:49 β€” πŸ‘ 27    πŸ” 6    πŸ’¬ 1    πŸ“Œ 0
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ICD-10 Diagnoses prior to ME/CFS diagnosis in children and young people suggest potential early diagnostic indicators Scientific Reports - ICD-10 Diagnoses prior to ME/CFS diagnosis in children and young people suggest potential early diagnostic indicators

10) Link to the paper:

Wirth et al. 2026. ICD-10 Diagnoses prior to ME/CFS diagnosis in children and young people suggest potential early diagnostic indicators.

28.02.2026 09:02 β€” πŸ‘ 8    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

9) "Need for vaccination against unspecified infectious disease" had a negative association with ME/CFS while the need for vaccination against influenza or COVID-19 was positively associated with ME/CFS.

Obesity on the other hand, had a negative association (OR: 0.84).

28.02.2026 09:02 β€” πŸ‘ 7    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

8 ) Some results are interesting though: ADHD had a negative association (OR: 0.80) while attention deficit disorder (without hyperactivity) had a positive association (OR: 1.5) - perhaps because of the cognitive dysfunction.

28.02.2026 09:02 β€” πŸ‘ 6    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

7) I suspect that for most of these diagnoses the patient might have already had the illness ME/CFS (even if they didn't get a ME/CFS diagnosis G93.3 yet). So the diagnoses given before might be misdiagnoses or comorbidities, rather than risk factors.

28.02.2026 09:02 β€” πŸ‘ 7    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

6) A lot of other common conditions also had a weak relationship to ME/CFS, things like back pain, hypothyroidism, scoliosis, dyspnea, but also mental and behavioral disorders such as depression (OR:1.21) and somatoform disorders (OR: 1.32).

28.02.2026 09:02 β€” πŸ‘ 5    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

5) The biggest odds ratios were for diagnoses that overlap with ME/CFS such as fatigue (OR: 2.19), mild cognitive impairment (2.93), fibromyalgia (2.08), neurasthenia (1.67), etc.

No surprises here.

28.02.2026 09:02 β€” πŸ‘ 7    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

4) The analysis only looked at ME/CFS diagnoses in the years 2020-2022 and checked which ICD diagnoses were more common in patients in the year before they received their ME/CFS diagnosis.

28.02.2026 09:02 β€” πŸ‘ 6    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

3) Diagnoses were based on the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) where ME/CFS has the code G93.3. The researchers found ca. 6000 ME/CFS cases which were paired to ca. 5 controls matched for age, sex and location.

28.02.2026 09:01 β€” πŸ‘ 6    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0

2) Data came from Techniker Krankenkasse, a major insurance fund covering about 15% of the German population. They looked at children and young adults aged 6-27 and found a ME/CFS incidence in this age group of 0.11%.

28.02.2026 09:01 β€” πŸ‘ 6    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0
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1) πŸ‡©πŸ‡ͺ This study looked at medical diagnoses in an insurance database that preceded an ME/CFS diagnosis in children and young adults.

For example: bronchitis and sinusitis were positively associated with ME/CFS rates while vaccination or ADHD has a negative association.

28.02.2026 09:01 β€” πŸ‘ 32    πŸ” 7    πŸ’¬ 1    πŸ“Œ 2

To be determined later I think

27.02.2026 18:08 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
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Nationale Dekade gegen Postinfektiâse Erkrankungen: Erste Maßnahmen festgelegt - BMFTR Es geht voran bei der Forschung gegen postinfektiâse Erkrankungen wie ME/CFS oder Long-Covid.

7) Full statement (in German):

27.02.2026 18:05 β€” πŸ‘ 5    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

6) The steering committee and working groups will meet regularly in the future to develop a long-term strategy for the National Decade Against Post-Infectious Diseases. Further measures are to be launched before the end of this year.

27.02.2026 18:05 β€” πŸ‘ 5    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

5) Thirdly, working groups will be created to provide support for the steering committee on several topics. The first three will focus on:

- research infrastructure and biospecimens
- health-care related research
- translational research, bringing research into practice

27.02.2026 18:05 β€” πŸ‘ 5    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0