Long-Term Follow-Up of Women with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A 16-Year Longitudinal Study, 2026, Tomić et al

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Long-Term Follow-Up of Women with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): A 16-Year Longitudinal Study

Tomić, Slavica; Pastornački, Aleksandra; Drljača, Maja; Glogovac, Jelena; Bošković, Vanja; Brkić, Snežana

Background and Objectives
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disorder characterized by persistent or relapsing fatigue lasting at least six months, not alleviated by rest and not previously present. It is accompanied by post-exertional symptom exacerbation and non-restorative sleep. Fatigue is often disabling and reduces daily activity by more than 50%.

This study aimed to evaluate the long-term frequency of somatic and psychiatric disorders in women previously diagnosed with ME/CFS and to describe the long-term clinical course, laboratory findings, and fatigue-related changes during a 16-year follow-up period.

Materials and Methods
Sixteen years ago, 40 women diagnosed with ME/CFS according to then-current CDC criteria were enrolled at the Clinic for Infectious Diseases and the Center for Laboratory Medicine, University Clinical Center of Vojvodina. All participants provided informed consent. After 16 years, 20 women agreed to follow-up evaluation.

At both time points, participants underwent structured questionnaires, clinical examination, psychological assessment, and comprehensive laboratory testing, including hematological, biochemical, endocrinological, and virological analyses. Fatigue severity was assessed using the FibroFatigue Scale (FFS) and the Multidimensional Assessment of Fatigue (MAF) scale.

Results
During follow-up, 15% of participants were diagnosed with rheumatoid arthritis, 10% with cervical or breast cancer, 5% experienced premature myocardial infarction, 5% developed bronchial asthma, and 20% were diagnosed with clinical depression.

Progression of ME/CFS was observed in 15%, while 5% reported infertility. Additionally, 15% developed arterial hypertension. Only 15% of participants did not report symptom worsening or new diagnoses.

Conclusions
Over the 16-year follow-up, 85% of women with ME/CFS developed significant somatic or psychiatric conditions. These findings suggest that women diagnosed with ME/CFS may experience substantial long-term somatic and psychiatric disease burden, supporting the need for continued clinical monitoring and individualized follow-up.

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Those percentages are misleading if you don't take into account this was half the original group, with I suggest a high likelihood of those still sick or developing other conditions being more likely to respond to the second follow up. And 15% of 20 people is only 3 people, 2 had the listed cancers so that suggests one breast cancer and one cervical cancer, so the numbers are far too small to conclude anything. And no healthy control group for comparison. It also depends what age they are. If I think if 20 local friends and acquaintances, there has been a similar numbers of cancers and other conditions diagnosed over that time span.
 
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