Salzburg ME/CFS support project delayed after hospice group withdraws

A project to support people with ME/CFS and their family carers in Salzburg has been delayed after the organisation that was due to run it withdrew, ORF reported. A new project partner is now being sought.

The Salzburg state parliament unanimously approved the project in April following a proposal by the Green Party. The Salzburg Hospice Movement, an organisation providing hospice and bereavement support, had initially agreed to adapt a project from Vienna and run the service.

However, after examining the issue in detail, the organisation withdrew, Green state parliament member Kimbie Humer-Vogl said. It would be willing to provide occasional services for people with ME/CFS, she said, but could not take on family support in the form originally planned.

New provider being sought

Although the limited level of research means that expertise in ME/CFS is lacking across many institutions and professional fields, Salzburg has enough potential providers for the project, Humer-Vogl said. With sufficient commitment, they could acquire the necessary knowledge, she added.

Initial discussions with potential partners are under way, and the project is expected to begin by next year at the latest. A report by the state social affairs department also confirmed that existing state support services for relatives do not currently meet the need.

Call for mobile care service

Estimates suggest that almost 1,000 people in Salzburg can no longer leave their homes or even their beds because of ME/CFS. The most severely affected may lose the ability to speak or require tube feeding, creating a need for specially trained staff.

Patients, relatives, doctors and politicians are calling for more support for people with severe and very severe ME/CFS. Families still lack a mobile care service, even though the new ME/CFS contact centre in Zell am See has received widespread praise.

About 4,500 people affected in Salzburg

For many people with ME/CFS, also known as myalgic encephalomyelitis or chronic fatigue syndrome, the illness leads to the loss of their ability to work and, in many cases, to a need for care that can extend to artificial feeding. They are severely chronically ill.

The main symptom distinguishing ME/CFS from other illnesses accompanied by fatigue is post-exertional malaise, or PEM. This is an intolerance to exertion that causes a worsening of the condition after even minor physical or cognitive effort. The deterioration can last for hours, days or months.

Estimates indicate that up to 74,000 people in Austria have ME/CFS, including about 4,500 in Salzburg.