Article
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): stigmatisation and burden of disease
Search Medline for
Authors
-
Patricia Vester
- UKE/Institut für Versorgungsforschung (IVDP), Hamburg, Deutschland
-
Stefan Boudouroglou-Walter
- UKE/Institut für Versorgungsforschung (IVDP), Hamburg, Deutschland
-
Jonas Schreyögg
- Hamburg Center for Health Economics, Hamburg, Deutschland
-
Katharina Piontek
- Otto-von-Guericke-Universität Magdeburg/Institut für Sozialmedizin und Gesundheitssystemforschung (ISMG), Magdeburg, Deutschland
-
Annemarie Feißel
- Otto-von-Guericke-Universität Magdeburg/Institut für Sozialmedizin und Gesundheitssystemforschung (ISMG), Magdeburg, Deutschland
-
Christine Blome
- UKE/Institut für Versorgungsforschung (IVDP), Hamburg, Deutschland
| Published: | September 10, 2024 |
|---|
Outline
Text
Background: Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) is a severe and chronic multi-systemic neurological disease with the hallmark symptom of Post Exertional Malaise (PEM) and further symptoms such as strong fatigue, cognitive impairments, sleep disorders and pain. The disease can lead to considerable impairment in daily activities and quality of life. Its exact aetiology is still unknown; due to missing diagnostic biomarkers, diagnosis is based on international consensus criteria. Prevalence in Germany is estimated at 140.000–310.000 persons. As many Post-COVID patients meet the ME/CFS diagnostic criteria, considerable increase in the prevalence is expected.
Besides the severe effects of the disease itself, patients with ME/CFS experience stigmatisation, which is higher than in many other chronic diseases such as Multiple Sclerosis (MS). Previous research on diseases such as lung cancer indicates that stigmatisation can lead to a delay in diagnosis, which may negatively impact health outcomes and lead to higher economic and disease burden. This might also be the case for ME/CFS. The burden of disease describes the impact of an illness on a population and includes health as well as social and economic aspects.
Objective: The scoping review aims to answer the following questions:
- What types of stigmatisation do individuals with ME/CFS experience and how are individuals affected by them?
- What is the burden of disease of ME/CFS?
Methods: The scoping review follows the Preferred Reporting Items for Systematic review and Meta-Analysis extension for Scoping Reviews (PRISMA-ScR) guidelines and the JBI manual for evidence synthesis. A literature search is conducted using the electronic databases PubMed, Web of Science, Scopus, ABI Inform Complete, CINAHL, and PsycInfo, complemented by a manual snowball search. The search strategy includes studies investigating the disease burden of ME/CFS and/or stigmatisation of individuals with ME/CFS. Therefore, the search algorithm combines ME/CFS AND (stigmatisation OR burden of disease). Study selection will be based on the inclusion and exclusion criteria and performed by two reviewers independently using Rayyan software. Records will be screened in a two-stage process involving titles and abstracts and subsequently full texts. In case of a disagreement considering the eligibility of a study, a third reviewer is consulted to reach a consensus.
Results: 1,796 records were identified in the databases. After duplicate removal, 832 records entered the title and abstract screening followed by 115 studies entering the full text screening. As a result, 59 studies are included in this review. The data extraction, analysis and discussion are expected to be completed by the end of August.
Implication for research and/or (healthcare) practice: This project is expected to help raise awareness for stigmatisation of individuals with ME/CFS, including stigmatisation by health care professionals, and provide information about the disease burden of ME/CFS.
Funding: Other funding; Project name: DFG-Graduiertenkolleg (“Managerial and economic dimensions of health care quality”); Grant number: GRK 2805/1
