Trial By Error: 'An Essay on Living with Severe ME'

forestglip

forestglip

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Trial By Error: 'An Essay on Living with Severe ME'

First paragraph of a guest essay:
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"I started writing this, a few sentences a day, because I didn’t think it’d be long before I couldn’t type at all. I’ve had Severe ME for twenty-five years now: I can’t walk or get out of bed, I can’t sit up or speak or press the power button on my toothbrush, and I can’t even cry or rage or feel the full horror of my condition because the resulting exhaustion will make me worse. I probably shouldn’t feel that I have to explain the severity of my illness as though I’m at fault for not recovering, but I do. I would just like to explain the mechanics of the disease that can wreck a person’s life in this way."​
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https://virology.ws/2026/01/27/trial-by-error-an-essay-on-living-with-severe-me/
 
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I can choose to exceed my limits, but I can’t choose to recover from exceeding them, and telling me to try is like telling a diabetic who’s being forced to eat a box of fudge to “try” not to become hyperglycaemic
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In the past I’ve equated the situation we face with the NHS to being like telling someone with a broken leg to run to the hospital to get treatment. But I think I’ll adopt this sentence, It encapsulates the impact of activity and PEM so well.
 
I liked this description. It is so hard to explain that I can't arrange an appointment for a specific day because I won't have recovered from one three days before. It's completely incomprehensible to most people.

"First of all, the problem with fatigue in ME is not up front, in how much you can do in the first place. The problem is how much you can recover from. The disease is defined by exertion intolerance, which sounds like a euphemism for laziness, but in fact it means that your body doesn’t respond to exertion in the normal biological way and you don’t recover properly from even trivial effort."
 
The idea of how much you can recover from—rather than how much you can do—is such a good way of expressing it.

This should explicitly be included as an outcome measure in trials, shouldn't it. Measuring how much activity people do after treatment is obvious, but I can't remember anyone looking at it the other way round and considering the time they spent recovering afterwards as the most important outcome. Yet it is, and I've no idea why it never occurred to me before.
 
'It’s true that the psychiatrists who hijacked this friendless disease decades ago weren’t using psychiatry to claim that ME isn’t “real”. They were, on the contrary, using ME to try and emphasise that psychiatry is real – “Look how properly actually sick your delusions have made you!” They’ve filled the gulfs in their knowledge with ideology instead of evidence'

This is so true and so well put.
 
Kitty said:
The idea of how much you can recover from—rather than how much you can do—is such a good way of expressing it.

This should explicitly be included as an outcome measure in trials, shouldn't it. Measuring how much activity people do after treatment is obvious, but I can't remember anyone looking at it the other way round and considering the time they spent recovering afterwards as the most important outcome. Yet it is, and I've no idea why it never occurred to me before.
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and is a lesson people with moderate ME can definitely take from severer people
 
Utsikt said:
I’d much rather try to assess how much that can be done without PEM.
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If there is no recovery period, either the drug has worked or the individual is still pacing and doing no more than they were before treatment—which will need explaining.

If there is a recovery period, and it's no shorter than it was when measured pre-treatment, the drug hasn't worked.

By focusing only on measuring activity, the need for recovery time can get overlooked—yet it's the most characteristic sign of ME/CFS. It needs to be included to make sure trial results don't talk up increases in activity (which are very likely to happen, participants will want the drug to work) as proof of effectiveness, overlooking the fact that they still can't sustain it without negative consequences.
 
Kitty said:
overlooking the fact that they still can't sustain it without negative consequences.
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I get what you’re saying, but isn’t this why you should do up to a year of tracking of activity with e.g. step counters?

We know PEM is unpredictable and it seems like an unnecessarily complicated way to do it to track recovery time because you’d have to match it to an exertion/stimuli level regardless.
 
V.R.T. said:
'It’s true that the psychiatrists who hijacked this friendless disease decades ago weren’t using psychiatry to claim that ME isn’t “real”. They were, on the contrary, using ME to try and emphasise that psychiatry is real – “Look how properly actually sick your delusions have made you!” They’ve filled the gulfs in their knowledge with ideology instead of evidence'

This is so true and so well put.
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It certainly is.
 
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