Multisysteemziekte: Voor zowel huisarts als patiënt gaat de vaak ongrijpbare ziekte ME vaak gepaard met een moeizame zoektocht. Huisarts Jojanneke Kant en haar patiënt Sophie Smeets vertellen over het...

A specialised care unit for severely and very severely ill ME/CFS patients opened in 2021. The results from the first 3 years are reported.People with ME/CFS who were diagnosed according to the Can...

Objective Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious chronic and complex multi-system disease characterised by symptoms such as post-exertional malaise, fatigue, cognitive impairment and pain. Diagnosis is based on international consensus criteria, and no curative treatment is available. In the USA, its prevalence is estimated at 0.42% among adults, with women affected three times as often as men. Prevalence is expected to increase due to the COVID-19 pandemic. In addition to its severe symptoms, ME/CFS has a substantial economic impact. This scoping review aimed to systematically examine the global health, social and economic burden of ME/CFS. Methods We conducted a systematic literature search following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) guidelines in six databases and supplemented it with a citation search. We assessed study quality using a modified version of the Mixed Methods Appraisal Tool. Results We included 20 studies that assessed costs (n = 16), disability-adjusted life years (DALYs) (n = 3), employment rates (n = 1), and school attendance (n = 1) as indicators of disease burden. Reported costs per patient ranged from USD 2,916 to USD 119,611, with indirect costs accounting for the largest proportion. DALYs reported for the USA ranged from 0.714 million in 2016 to 5.77 million in 2022. Conclusion ME/CFS imposes a substantial health, social and economic burden of disease. Discrepancies in estimates are probably due to differences in study samples, methodologies, cost components, and healthcare systems. Because ME/CFS is assumed to be underdiagnosed, its true burden may be even higher.

YouTube video by Fatigatio e. V.

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Jojanneke Kant leerde via haar patiënten hoe ingrijpend PAIS is en hoe groot het kennisgebrek onder zorgverleners hierover nog altijd is.

(bericht bewerkt op 18 september 2025)                                                       Onze dochter Céline is op 18 september 2023 op 32 jarige leeftijd overleden door euthanasie. Zij …

YouTube video by Kasper C. Jansen

YouTube video by Kasper C. Jansen

YouTube video by David M Tuller

By David Tuller, DrPH Keystone gathering round-up from Sick Times Many prominent Long COVID researchers gathered in Santa Fe, New Mexico, last week to discu ...

Background People reporting long COVID (LC) or post-COVID-19 vaccination syndrome (PCVS) not only suffer from their symptoms but also from stigmatization. Despite ample account and characterization of...

YouTube video by Anil about ME

YouTube video by Patient-Led Research Collaborative