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#MEAwarenessDay
(1/8) If someone had told a few years ago that I will suffer from an illness called "chronic fatigue syndrome", I would never have estimated its severity. I might have thought of people getting tired a little faster.
What do you think of when you hear "fatigue"?
(1/8) If someone had told a few years ago that I will suffer from an illness called "chronic fatigue syndrome", I would never have estimated its severity. I might have thought of people getting tired a little faster.
What do you think of when you hear "fatigue"?
(2/8) The feeling after a long day at work or after exercising, right? #ME(CFS) couldn't be further away from this feeling. The first time you heard "CFS", did you think of a serious illness like end-stage cancer or AIDS? Probably not.
(3/8) However, the level of suffering is similar for the most severely affected people with "#MECFS".
People know the feeling of #fatigue & therefore falsely draw the conclusion of being able to suspect what the illness feels like.
People know the feeling of #fatigue & therefore falsely draw the conclusion of being able to suspect what the illness feels like.
(4/8) And I don't blame them. The name doesn't reflect the complexity or severity.
Fatigue is part of countless illnesses. I remember my neighbour telling me "I had CFS during my chemotherapy, too". Again, this has nothing to do with the independent illness ME.
Fatigue is part of countless illnesses. I remember my neighbour telling me "I had CFS during my chemotherapy, too". Again, this has nothing to do with the independent illness ME.
(5/8) The name is, in my opinion, largely responsible for the lack of understanding in society, among physicians, and for the reluctance of scientists to conduct studies.
It also leads to sufferers themselves not recognizing that they have this illness
It also leads to sufferers themselves not recognizing that they have this illness
(6/8) because "Chronic Fatigue” sounds as if one is only exhausted, although you yourself feel seriously ill and have all the other symptoms such as flu and concussion-like feeling, muscle weakness, orthostatic intolerance etc. that are all downplayed by the name.
(7/8) ME is a neuroimmune, severe energy-limiting illness involving mitochondrial, metabolic, endocrine, & autonomic dysfunction. In other words: The body is totally f***.
(8/8) Obviously, the illness involves a form of fatigue. However, it is not the healthy form of being exhausted but an energy production impairment at a cellular level.
#millionsmissing #pwME #MyalgicEncephalomyelitis #LongCovid #MEAwarenessDay2023
#millionsmissing #pwME #MyalgicEncephalomyelitis #LongCovid #MEAwarenessDay2023
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