Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’

[Countrygirl]

https://theconversation.com/ignored-blamed-and-sometimes...

Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’​

Published: October 21, 2024 10.35am BST

There is a city nearby that we hide from view. Its people are of all ages, ethnicities and classes. What unites them is a disease: all are diagnosed with myalgic encephalomyelitis, or ME.

We hide them there because we don’t know where else to put them. Like a plague village, we have no plans to treat them, to study their disease or to trial possible drugs for them. We could choose to draw up such plans, to give the residents hope for their future health. But our country’s choice is to turn away and forget about these 250,000-plus inhabitants altogether. A city the size of Brighton that we deliberately ignore.

Worse, when we don’t ignore them, we blame them, telling them that they are all free to rise from their beds and wheelchairs, to walk away from the city. Doctors tell them they can free themselves of the disease by changing their belief systems. Make the effort, they say, and you will regain your health and previous lives............................

 

[southwestforests]

That bit,

Eventually, we managed to secure a £3.2m award for DecodeME, a hunt for ME’s genetic causes.

DecodeME is not just the world’s largest study of the genetic causes of ME, but it was the first to place people with experience of ME at its heart. A total of 27,000 people with ME in the UK took part. We will report the study’s results as soon as we can. When we do, we will give them back first to the ME community whose data and samples we hold in trust.

Brings to mind,

Part of a thing I sent to three friends this morning with that blood thing I posted about a little bit ago today.

And since it is what I said, I'm not denoting it as a quote,

Dad telling about when military doctors investigating his sudden health decline there in Virginia Beach in the early and mid 1980s said, "There's something wrong with your blood but we don't know know what it is."

Dad was the US Navy's first medical retirement with Fibromyalgia and ME/CFS, plus he had half a dozen other health things happening along with them.

It all began like that proverbial flipping a switch.

One moment he was a Navy officer happily doing his morning run. He was in to that kind of thing, did track and field while at MU. And it didn't hurt his military physical fitness any.
Next moment he suddenly had too little energy to take another step.

Then in 2005 that same Fibromyalgia and ME/CFS hit me during Christmas in retail.

But I didn't yet know it was them -- I hadn't been in the military, hadn't been those places, hadn't had those vaccinations, hadn't been exposed to those toxins and irritants,
hadn't spent 3 to 6 months every year being 24/7 on ships which reeked of fuel oil and paint thinner, so, of course that which had happened to him was not going to happen to me.

(Hmm, let's see, if Dad was born in 1940 and that hit him in 1982, and, I was born in 63 and this hit me in 05 ... wait a minute, we were the same age when this hit, is there some kind of genetic time bomb thing going on???????)
(And, Dad, the now late Grandma Maxine, Aunt Susan, are all known to have an inheritable blood disorder)