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

Surrounded by an electric fence that doctors and society insist is not there and that we are just imagining and inflicting upon ourselves.

Which is about as onerous, cruel and totally unnecessary an additional burden to the disease itself as it is possible to come up with.
 
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Great piece.

Something that also stood out to me was the comparison to endometriosis, simply because this was a comparison I hadn't heard of yet or because I had simply forgotten about it.

I cannot judge how well fitting the comparison is, but it seems that several GWAS have been conducted in endometriosis. It makes me wander: Why are we not doing the same for ME/CFS? Why is nobody conducting a GWAS in Germany (which would have a suitably large population and has many ME/CFS researchers), in the US or elsewhere? (I'm aware of the GWAS in Netherlands but that anyways appears to be a lost cause). If everbody is waiting for DecodeME is that not potentially a rather wasteful use of time?
 
It’s such an honest, heartbreaking and yet hopeful article! Thank you, @Simon M and @Chris Ponting!

Your words, Simon: “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." They reminded me of something similar I wrote ten years ago. It’s quite interesting that many of us use the same kind of metaphors to describe what’s happening, without knowing each other. When I wrote this, I had never heard of ME and didn’t yet have a diagnosis, but I could no longer live a normal life. (English isn’t my first language so I apologize for any errors.)

Know your place

Have you ever tried to touch a live electric fence? Sufficient current flow to keep the animals inside. Imagine that your own body is electrically conductive in the same way. You're fine as long as you stay in your place. As soon as you try to go outside, you get electric shocks.

Place, know your place. You have no business being out there. If you are good and sit really still, we can move the limit. Just enough for you to enjoy a little more space, get some juicier grass. Are you happy now? So happy that you want to go a little further?

Place, know your place. Haven't you learned yet? You can never go beyond the limits of the body. How many times do you have to burn yourself in order for you to learn?

What’s that? Do you want to know where the fence is, where the line is drawn? Do you want to know for how long you have to stay in there?

Don't ask so much. Know your place. No one can measure the limits that are set for you. Besides, it’s only you who gets burned. The shocks get stronger the more you try, so make up your mind. Will you sit pretty and wait?

Want to ask someone else for advice? Why?
No one else sees the fence you're talking about.
 
I also like the invisible electric fence image. My one I invented before I even knew about PEM was that my life was like walking a tightrope where a single misstep or puff of wind could topple me off, and I never knew how far I'd fall and how long it would take to climb back on again.
 
Simon M said:
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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Thank you, Simon.
But what you don't say is how you came to my rescue a decade before. This is what friends do - when they can - and Simon did this first!
 
This is beautiful, thank you both so much. Simon and the rest of us didn't have a choice. You had a choice, Chris, and that you chose not just to stick by Simon as a friend, but to try to help get him and others out of here, despite all that it costs you, is remarkable. Thank you.

Because of the NIH study's focus on our purported "altered effort preference", this is my favourite bit:
ME exiles people from their family, friends, and hoped-for futures. For most, this banishment is for life because nine in ten will never recover, and also because we expend too little effort to end this wicked disease.

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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A moving article which in discussing our metaphorical city of stolen futures and lost hope, reminded me a little of "Jonathan Strange & Mr Norrell" by Susanna Clark (who I believe is a PWME), which I also liked. One wonders if it was an artistic influence.

Good luck with DecodeME @Chris Ponting I am sure the results will be very interesting, thanks.
 
dave30th said:
We were initially scheduled to discuss the "biomarkers" pre-print but switched to this instead once the piece came out. I didn't want to do both together because it would have been significantly longer, and I thought each subject deserved its own conversation. So that other interview will be forthcoming.
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Very good. Have you got a new microphone? The sound was much smoother than usual. Or was this the effect of plush hotel soft furnishings?
 
Ash said:
Have you got a new microphone?
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I think the sound varies depending on the wifi where I am. it's fine when I'm at home. Elsewhere seems to be iffy. Last time I spoke with Chris about something, his connection was terrible. It's always a bit of a crap-shoot. But I'm so technologically challenged that I really need a producer who can edit and spiff things up a bit. My production values are pretty low!!!!
 
dave30th said:
I think the sound varies depending on the wifi where I am. it's fine when I'm at home. Elsewhere seems to be iffy. Last time I spoke with Chris about something, his connection was terrible. It's always a bit of a crap-shoot. But I'm so technologically challenged that I really need a producer who can edit and spiff things up a bit. My production values are pretty low!!!!
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There may be someone on here who would volunteer to help. I believe some podcasters record their live conversations at both ends and send the recordings to the editor. This enables you to produce a high quality audio of a live conversation with a poor internet connection.
 
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