ME/CFS: When tiredness lingers

The long road to diagnosis

As it has not yet been possible to determine the exact causes of ME/CFS, receiving an appropriate diagnosis can be difficult. And there aren't any specific procedures or laboratory tests to identify the disease. As a result, doctors rely on a comprehensive questionnaire regarding the state of the individual's health, as well as physical examinations and the exclusion of other possible causes for the symptoms. One important criterion for the diagnosis is that the person has experienced the symptoms for an extended period of time (normally six months or longer).

Can ME/CFS be treated?

ME/CFS treatments focus on alleviating the symptoms of those affected and improving their quality of life despite the disease. Current therapeutic approaches include:

• Energy management/pacing: Those affected learn how to carefully plan their activities and include breaks to avoid overexertion.
• Medical treatment: In some cases, medication is used to relieve pain, or to treat sleeping disorders or other specific symptoms. There are ongoing drug trials to find out which drugs that work for other, mostly neurological or (auto)immune diseases, could also help with ME/CFS.
• Psychological support: Since many people with ME/CFS also struggle with their mental health, getting psychological support, such as cognitive behavioural therapy or stress management, can be helpful.
• Rehabilitation: Specific physiotherapy and occupational therapy that is adapted to the individual's energy level can help to improve mobility and make everyday life easier without causing a post-exertional malaise, which is typical of the disease.
• Research and innovation: Continuous research is crucial in order to learn about the disease and develop new treatment methods.
  
  

Those affected feel they're not taken seriously

The disease has been a major subject of public debate since Covid-19, because ME/CFS can also be triggered by infection with the coronavirus. Between 10% and 20% of all people suffering from the long-term effects of coronavirus meet the criteria for ME/CFS. Despite the large number of people affected, the disease is often not taken seriously, and those affected are frequently dismissed as malingerers or psychologically unstable by those around them, but also by doctors. Collaboration between patients, doctors, therapists and researchers is crucial to deepening our understanding of this disease and developing more effective treatment options to help the people concerned return to work and help them live fuller lives. This can increase acceptance of the disease within society.