Ignored, blamed, and sometimes left to die – leading expert ME explains origins of a modern medical ‘scandal’, Chris Ponting, The Conversation, 2024

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

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.

https://theconversation.com/ignored...he-origins-of-a-modern-medical-scandal-241149
 
This is a great article. It strikes the careful balance between being formal and informative while emphasizing the human aspect in a way that people can relate to.

I wish 'scandal' wouldn't have been quoted, but I assume the editors insisted. This is a scandal, one of the biggest in the history of modern medicine. I know it's a quote but still, a spade is a spade.

I especially like this:
That’s the irony – it’s society’s lack of effort to understand this illness and its treatment; our societal inertia; our failure to accept patients’ symptoms that perpetuate their exile.
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The irony of major illness being discriminated and misrepresented as laziness, only to be met with misrepresentation and laziness by those responsible. It's quite a catch, that catch-22:
“The more I said that I had a physical illness, the more they said I had a mental illness. The more I questioned the nature, the reality of the mental illness, the more I was found to be in denial, deluded.”
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All bias aside, I think this is a powerful and persuasive article.

Chris has been a great friend, and we have had many good times over the years. I'd like to share one story about how he helped me.

In 2000, I was bed bound with hardly any energy to talk, and living back with my parents after my marriage had broken up under the strain of severe ME. I was physically isolated from friends, as well as struggling in many ways. Chris took a day off work to see me. Half the day was on the road, most of the rest was waiting for me to have enough energy for another fragment of conversation.

And he did that repeatedly. It wasn't as if he had the time - he'd recently become a professor and was working ferociously hard. Chris helped keep me afloat in the most difficult of times, and it is typical of him.

Thank you, Chris.
 
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"I never know how much it is safe for me to do. It’s like I’m surrounded by an electric fence that will trigger a bad day if I touch it. But the fence is invisible, and moves every day."

Thank you Simon, so well expressed. And thank you Chris for your committed efforts.
 
Simon M said:
All bias aside, I think this is a powerful and persuasive article.

Chris has written about me. He has been a great friend, and we have had many good times over the years. I'd like to share one story about how he helped me.

In 2000, I was bed bound with hardly any energy to talk and living back with my parents after my marriage had broken up under the strain of ME. I was physically isolated from friends, as well as struggling in many ways. Chris would take a day off work to see me. Half the day was on the road, most of the rest was waiting for me to have enough energy for another fragment of conversation.

And he did that repeatedly. It wasn't as if he had the time - he'd recently become a professor and was working ferociously hard. Chris helped keep me afloat in the most difficult of times, and it is typical of him.

Thank you, Chris.
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Aww. Thank you for sharing this story.
 
Binkie4 said:
"I never know how much it is safe for me to do. It’s like I’m surrounded by an electric fence that will trigger a bad day if I touch it. But the fence is invisible, and moves every day."

Thank you Simon, so well expressed. And thank you Chris for your committed efforts.
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It described very well the “mental load” always hanging over us, doesn’t it?
The invisible line of the electric fence, where is it just now? It was over there, before -ouch that’s an electric shock- I guess it’s now much closer than I thought.
 
Great article. Huge thanks to Chris and Simon.
Simon M said:
All bias aside, I think this is a powerful and persuasive article.

Chris has written about me. He has been a great friend, and we have had many good times over the years. I'd like to share one story about how he helped me.

In 2000, I was bed bound with hardly any energy to talk and living back with my parents after my marriage had broken up under the strain of ME. I was physically isolated from friends, as well as struggling in many ways. Chris would take a day off work to see me. Half the day was on the road, most of the rest was waiting for me to have enough energy for another fragment of conversation.

And he did that repeatedly. It wasn't as if he had the time - he'd recently become a professor and was working ferociously hard. Chris helped keep me afloat in the most difficult of times, and it is typical of him.

Thank you, Chris.
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This made me cry. I wish you could have included it in the article. We all need friends like Chris.
 
Simon M said:
All bias aside, I think this is a powerful and persuasive article.

Chris has written about me. He has been a great friend, and we have had many good times over the years. I'd like to share one story about how he helped me.

In 2000, I was bed bound with hardly any energy to talk and living back with my parents after my marriage had broken up under the strain of ME. I was physically isolated from friends, as well as struggling in many ways. Chris would take a day off work to see me. Half the day was on the road, most of the rest was waiting for me to have enough energy for another fragment of conversation.

And he did that repeatedly. It wasn't as if he had the time - he'd recently become a professor and was working ferociously hard. Chris helped keep me afloat in the most difficult of times, and it is typical of him.

Thank you, Chris.
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Thanks for sharing this
All I can say is I’m sending a big hug to you and to Chris
 
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