2023-05-07 04:07:07
An estimated 26,000 to 80,000 people in Austria suffer from ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). This imprecise figure alone shows that there is a lack of knowledge and research on this. In addition, there is a need for contact points and more recognition, the Austrian Society for ME/CFS, as an organization for those affected, demanded on the occasion of World ME/CFS Day on May 12th. Events and campaigns are intended to make the disease more visible.
ME/CFS is a severe neuroimmunological multisystem disease that, depending on its severity, can lead to severe physical limitations, loss of ability to work and the need for care up to and including artificial nutrition. The main symptom is post-exertional malaise (PEM). This is a stress intolerance that causes the condition of those affected to deteriorate following (often even mild) physical and/or mental exertion. This deterioration can last for hours, days, or even permanently.
“According to international studies, the quality of life of those affected is lower than with many other serious chronic diseases. However, the supply situation is not comparable in the slightest. There is not a single public contact point for ME/CFS in Austria,” criticized Kevin Thonhofer, chairman of the Society for ME/ CFS. At the end of April, the Ministry of Health and Science were unanimously asked by the National Council to work towards better diagnostic and therapeutic care for ME/CFS.
As with other viruses, ME/CFS can also be triggered by the SARS-CoV-2 coronavirus. However, the pandemic has led to increased international interest in ME/CFS research, the Society for ME/CFS informed. Among other things, the massively slowed down regeneration of those affected or an increased sodium content in the muscles have been proven as possible causes of considerable muscle weakness. So far, however, there is not a single drug for the causal treatment of the disease.
Global awareness of ME/CFS will be raised on May 12th. In Austria, a protest action will take place in front of the parliament from 10 a.m. Under the motto “#unsupplied since 1969”, as a reference to the recognition of the disease by the World Health Organization (WHO) since 1969, those affected and their families draw attention to the poor supply situation. Shoes and messages put up “stand for those affected who are too ill to protest and stand up for their rights,” explained Thonhofer. The campaign is supported by prominent speakers. Also, as in the past, landmarks and buildings in Austria and other countries will be illuminated in blue on World ME/CFS Day. On May 13th there will be a benefit reading of “The Suspects” in the Breitenseer Lichtspiele in favor of the Society for ME/CFS.
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