•ME/CFS-THE DISEASE THAT CHANGED MY LIFE• Myalgic Encephalomyelitis (inflammation of the spinal cord and brain with musculoskeletal involvement)/Chronic Fatigue Syndrome is a complicated multisystematic neuroimmunological disease It causes EXTREME FATIGUE and there are more than 200 symptoms known that worsen with physical or mental activity (post excertional malaise= PEM) but don't fully improve with rest. The cause of ME/CFS is unknown because there is HARDLY ANY RESEARCH DONE. It could be caused by dysregulation of the immune system, cellular energy metabolism and the central and autonomic nervous system, which controls breathing and the heartbeat and in some cases autoantibodies, oxygen deficiency in cells/tissue, chronic inflammation, disturbed microcirculation and circulatory disorders can also be detected It is most likely triggered by viruses (such as Covid or Epstein-Barr) but also vaccines, accidents, pregnancies, antibiotics,… have caused ME/CFS before. 17-24 MILLION people are suffering worldwide and DISAPPEARING from their everyday life and yet no one really seems to care. This cruel disease has the LOWEST QUALITY OF LIFE out of every single disease existing on this planet and leaves way too many of us SEVERLY DISABLED, in need of constant care, bed- or housebound and 60% are unable to work. It is an extremely lonely and isolating life as many of us are unable to maintain social contacts. ME/CFS doesn’t know age or gender and anyone can get sick with it. However, most of the patients are young females. It can take centuries to get properly diagnosed because we constantly get GASLIGHTED by medical staff, “friends” or family members, not enough doctors are educated and currently, there is no single test to diagnose ME/CFS. Doctors make a diagnosis by excluding all other illnesses that might be causing symptoms and following accepted diagnostic criteria. The person's results from routine medical tests will often be normal, but additional tests may show abnormalities. Many of us are advised to go beyond our activity limits to “train ourselves back to life” which only worsens our condition drastically. ME/CFS IS NOT A MENTAL ILLNESS! Often the disease rarely occurs alone and brings with it many accompanying diagnoses, such as MCAS or POTS, which are also difficult to diagnose. There are HARDLY ANY SPECIALIZED FACILITIES and many of us are too sick to go to the doctor or the hospital. There is NO APPROVED MEDICATION or CAUSAL TREATMENT available due to the LACK OF RESEARCH. There only a few treatments or off-label medications that may relieve some symptoms but they are often extremely costly and hard to access. We all have to carefully manage our energy levels (PACING) to prevent PEM and crashes and stabilize( or even improve) our condition. Otherwise, we run the risk of getting worse over time. Some people may go into remission or improve their condition remarkably. The younger and earlier the disease is detected and the better the pacing, the better the chances WE NEED TO BE HEARD WE NEED TO BE SEEN WE NEED TO BE TAKEN SERIOUSLY WE NEED MEDICAL CARE WE NEED RESEARCH WE NEED HELP #postviralfatiguesyndrome #mecfs #mecfsawareness #mecfswarrior - @laura.wchlz