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

The @Simon M quotes and references so poignant.

 

Thank you @Chris Ponting

 

I so loved the city metaphor @Chris Ponting.

 

Very nicely written.

I now wince every time with the McE and B red herring but apart from that all very powerful and clear.

 

Really powerful article thankyou so much Chris and Simon. I'll be sharing this with my friends and family

 

Thanks @Chris Ponting and @Simon M
Not an easy read but hopefully it will surprise and perhaps shame a few outside of the community into taking notice.

 

This is superb - huge thanks to @Chris Ponting for his deep care for, and understanding of patients, and to our brave @Simon M for his powerful testimony of the personal cost of this horrible disease.

 

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:

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:

 

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.

 

"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.

 

Aww. Thank you for sharing this story.

 

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.

This made me cry. I wish you could have included it in the article. We all need friends like Chris.

 

Thanks, Rob. We do. And Just thinking back to what Chris did then makes me tearful.

 

Now I've regained my composure from the blubbering mess I was after reading this earlier today - an enormous thank you to Chris and Simon.