What Severe ME is and isn’t: When Myalgic Encephalomyelitis is Living Death
What is Severe ME? And what do you need to know about it?
☆SevereME affects 25% of people with myalgic encephalomyelitis, a debilitating post-viral neuroimmunological disease.
☆Severe ME has a massive range of severity from "only" housebound, to patients who are bedbound with severe symptoms requiring tube feeding and IV Hydration.
☆Severe ME Day is August 8th, the birthday of Sophia Mirza, a severe ME patient who died from inappropriate treatment and psychiatric Incarceration.
☆Very Severe ME patients are as sick as late stage AIDS patients but can live like this for years or decades in a state often referred to as "Living Death."
☆Adrenaline Surge symptoms can mask the severity of ME.
☆Severe ME patients suffer medical Neglect due to their inability to access telehealth or home Visits from doctors. There is no cure ard research is underfunded. Help: donate to @openmedf
☆Severe ME patients do not often have good choices for safe care and living arrangements due to poverty leaving them extremely vulnerable to abuse. Help: support @mutualaidforme
☆Severe ME patients in hospital suffer forced inappropriate treatment such as improper physical therapy, psychiatric incarceration, and dangerous levels of stimulation. Help: sign at linktr.ee/thereforme There For ME
There are 55 Million people with MECFS and these Millions Missing are joined by Millions More with Long Covid. The majority of these patients will not have "severe" ME. Only the "mild" sort that reduces your functional capacity by 50%.
But for those with severe ME, our invisible Illness is made doubly so, often only recognized in death. Most severe patients are too for social media advocacy. Certainly to ill to call politicians or show up at protests. Help: @meactnet
Imagine how many voices are silenced. Imagine how many are never diagnosed at all. How many die undiagnosed, homeless, neglected or abused.
So now you know what severe ME is and isn't. What are you gonna do about it?
