Region: Austria
Health

ME/CFS: Recognition, medical care & protection for affected persons and research funding

Petition is directed to
Federal Austrian Government , Austrian parliament
26.924 Supporters 19.973 in Austria
Collection finished
  1. Launched 07/11/2021
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Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome – ICD-10 G93.3

ME/CFS is a severe multisystem disease that currently affects between 26,000 and 80,000 people in Austria [1]. Depending on its severity, the disease leads to severe physical limitations and loss of the ability to work in most affected individuals. Despite the high number of affected people and the severity of the disease, ME/CFS is little known, insufficiently researched and affected people are inadequately cared for in the health and social system. 

Demands

This petition calls on Austrian politicians to support ME/CFS sufferers in four areas: 1. information and education, 2. development of medical treatment and care facilities, 3. social security, and 4. research funding. For the implementation of the demands and ongoing evaluation, a working group is to be formed.

 

1. Information and education

  • Information, education and training of Austrian physicians and health care staff according to current research to create awareness and expertise in dealing with ME/CFS, to reduce the currently high time span of 5-8 years until receiving the diagnosis and to eliminate outdated dogmas.
  • ·       IInclusion of ME/CFS in the curricula of Austrian medical universities in order to sustainably improve care.
  • Public education campaigns to raise awareness in society as a whole 

2. Development of Medical Treatment and Care Structures

  • Financing public contact points for the diagnosis, care and treatment of ME/CFS patients
  • Interdisciplinary care and contact to existing resources for ME/CFS affected persons according to current research to ensure efficient use of existing resources.
  • Ensure financial support for examinations necessary to diagnose ME/CFS in the existing healthcare system.

3. Social Protection of affected Persons 

  • Targeted training of assessors in the structures of the social insurance institutions as well as the Social Ministry Service for the recognition of ME/CFS diagnoses for benefit claims.
  • Creation of nursing and care facilities for persons severely affected by ME/CFS
  • Targeted use of existing as well as the expansion of flexible work arrangements to keep mildly affected ME/CFS patients in the labor market  

4. Research Funding

  • Funding of research on ME/CFS for the creation of treatment options and care for those affected according to state of the art research.

In order to implement these demands, it is proposed that a working group be formed, which will not only be entrusted with the realization of the individual demands in close cooperation with the Austrian Society for ME/CFS, but will also be responsible for the ongoing evaluation of progress and measures taken. 

Reason

Situation of ME/CFS affected persons in Austria

ME/CFS affected persons are hardly cared for in the Austrian health care system and are not sufficiently covered by the social system.  

One of the biggest challenges for affected people is getting the correct diagnosis. Due to the low awareness of the disease, 84-90% of affected individuals are not (correctly) diagnosed [2,3]. Most often, ME/CFS is mistaken for a mental illness, which leads not only to incorrect, but often also harmful treatment. In Austria, affected individuals take about 5-8 years on average to receive an accurate ME/CFS diagnosis [4]. 

Even after appropriate diagnosis, affected persons are inadequately cared for and protected. There are neither publicly funded contact points, counseling services, support services, nor rehabilitation and care facilities. In socio-legal proceedings, the diagnosis of ME/CFS is usually not recognized despite mandatory ICD coding (ICD-10 G93.3). The severity of the disease, the lack of care and the lack of official recognition of ME/CFS often lead to dramatic financial and social situations for those affected.

Exacerbation of the situation due to Covid-19.

Although the exact causes of ME/CFS have not been adequately elucidated due to the lack of research and insufficient research funding, data show that in a large proportion of cases, the disease begins with an infection. International studies therefore link ME/CFS and long covid and show great similarities in symptoms and underlying mechanisms. Researchers hypothesize that a substantial proportion of covid sufferers may be left with ME/CFS [5,6]. The current covid pandemic highlights the long-term consequences of postviral disease through the large number of people affected, and highlights the extent to which ME/CFS has been neglected in care and research to date.

Link to the detailed petition text incl. statements of Austrian physicians and researchers: https://cfs-hilfe.at/petition/ 

 

Sources

[1] Lim, E. J. et al. (2021). Systematic review and meta-analysis of the prevalence of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). J. Transl. Med., 2020, 18, 100. https://doi.org/10.1186/s12967-020-02269-0

[2] Jason, L. A. et al. (2006a) The face of CFS in the U.S. CFIDS Chronicle 16-21. Link: http://www.researchgate.net/profile/Leonard_Jason/publication/236995875_

[3] Solomon, L., and W. C. Reeves. 2004. Factors influencing the diagnosis of chronic fatigue syndrome. Archives of Internal Medicine 164(20), 2241. https://doi.org/10.1001/archinte.164.20.2241 

[4] Österreichische Gesellschaft für ME/CFS (2021) ME/CRS Report Österreich 2021. https://cfs-hilfe.at/report-2021/

[5] Kedor, C. et al. (2021). Chronic COVID-19 Syndrome and Chronic Fatigue Syndrome (ME/CFS) following the first pandemic wave in Germany: a first analysis of a prospective observational study. medRxivhttps://doi.org/10.1101/2021.02.06.21249256 

[6] Komaroff, A. L., & Bateman, L. (2021). Will COVID-19 lead to myalgic encephalomyelitis/chronic fatigue syndrome?. Frontiers in Medicine7, 1132. https://doi.org/10.3389/fmed.2020.606824

Thank you very much for your support, Österreichische Gesellschaft für ME/CFS , vienna.

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