by Jodi Bassett at planetthrive.com
In trying to explain how extreme the suffering is, and how urgent the need is for genuine advocacy in Myalgic Encephalomyelitis (M.E.), just relating the basic facts isn’t enough. I can tell you the following basic M.E. facts:
• What defines M.E. is a specific type of acquired damage to the brain (the central nervous system) caused by a virus (an enterovirus). It is an acute (sudden) onset neurological disease initiated by a virus infection with multi system involvement which is characterised by post encephalitic damage to the brain stem.
• The term M.E. was coined in 1956 and means: My = muscle, algic = pain, Encephalo = brain, mye = spinal cord, itis = inflammation. This neurological damage has been confirmed in autopsies of M.E. patients.
• M.E. can be more disabling than MS or polio, and many other serious diseases. M.E. is one of the most disabling diseases there is. More than 30% of M.E. patients are housebound, wheelchair-reliant and/or bedbound and are severely limited with even basic movement and communication. In some cases M.E.is fatal.
• Many patients with M.E. do not have access to even basic appropriate medical care. Medical abuse and neglect is also extremely common and often results in the disease becoming severe (and in some cases, death is caused).
• Governments around the world are currently spending $0 a year on M.E. research....