It Seems Impossible That People Don't Believe Having ME Is A Serious Illness

[Sly Saint]

"
Myalgic Encephalomyelitis, chronic fatigue syndrome, CFS/ME. These are just a few terms to describe one of the most destructive illnesses known to man. Manifesting as unrelenting fatigue and profound pain, ME/CFS is destroying the lives of 250,000 people in the UK.

One in four are so severely affected that they are rendered house-bound or bed-bound with some even reliant on tube feeding. Sufferers are often confined to their beds, unable to walk and need help even to shower.

ME is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. But this definition doesn’t even touch the surface. My life has been ripped to pieces and then burnt down into nothing. My life was planned out. My life had so much potential but now as I write this, I haven’t moved for hours, I am in extreme pain all over my body, I lay in the dark because of light sensitivity and wait for someone to return home to take me to the toilet.

My bed is my world. My bed is my support. It has seen me through endless days of torturous pain, fatigue and inner turmoil."

https://www.huffingtonpost.co.uk/en...5lc3M&guce_referrer_cs=P31RtTR09APG8srxpsXQpw

unfortunate that she says 'the most common symptom is extreme tiredness' (as per NHS website).

 

[Inara]

I am not surprised ME goes unseen. You just disappear if you can't run along anymore. People forget you.

In earlier days I imagine most people with ME disappeared and died (e.g. due to lack of water and food) or kept on and died (due to over-doing; but that takes longer and leads to option 1: disappear and die). (I'm a bit cynical today.)

 

[rvallee]

I am not surprised ME goes unseen. You just disappear if you can't run along anymore. People forget you.

In earlier days I imagine most people with ME disappeared and died (e.g. due to lack of water and food) or kept on and died (due to over-doing; but that takes longer and leads to option 1: disappear and die). (I'm a bit cynical today.)

And the myth that it's a first world disease hides what is likely millions of deaths in the developing world over the past half-century. Living with ME in a society that does not have a safety net only leaves one outcome and it's early death. Those are not counted because most people with a disability face the same fate in poor countries, but one day medicine will have to face this reality and I wonder how they'll react.

It's certainly lost given how many are killed by infectious diseases, but I don't understand why the myth endures despite there being contradictory evidence. Denial is one hell of a drug.