Myth: ALS is a muscle disease

Many people are unaware of the fact that ALS always only affects the central nervous system (brain and spinal cord), never the muscles directly. In Germany, ALS is generally called a "Muskelkrankheit", a muscle disease.[1] In the Netherlands, ALS is called the same, a "spierziekte", a muscle disease.[2] In Norway, ALS is called a "muskelsykdom", again a muscle disease.[3]

However, ALS has nothing whatsoever to do with muscles. ALS is defined as a disease of the nerve cells in the brain and spinal cord[4] (that control voluntary muscle movement). As we will explain, there are two fundamental things provably wrong with this definition, but the basic premisse is correct: Neurons are damaged.

Als neurons and muscle

What is the origin of this widespread misunderstanding, this misnomer of the disease as a "muscle disease"? Medical laypeople see the muscles withering and failing to respond to the commands from the brain, but neurologists know the underlying cause but are doing frustratingly little to dispell the fundamental misunderstandings caused by this widespread myth.

However, medical professionals are doing little to rectify this fundamental error in understanding the disease. Perhaps because focusing on the muscles distracts the attention from the brain? Distracting the attention from the brain makes life easier for doctors.

For imagine a patient with signs of early stage ALS. This patient, as many ALS patients do, remembers a tick bite one or more year prior. If ALS would be a "brain disease", the patient, having read about how Lyme disease can ravage the brain, would insist on getting tested for Lyme. But neurologists hate doing that, as we prove with hard data, published by the doctors themselves.

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