Language Matters: What Not to Say to Patients with Long COVID, ME/CFS, and Other Complex Chronic Disorders, 2025, Nancy J. Smyth et al

It’s cruel how people trying to help can make you so much worse. I’m sorry you had to go through that and still have to live with the consequences.

 

He played Superman in the 70s and 80s and he was pretty famous back then for it. His story was of course tragic in itself to begin with but the fact that he was widely known as Superman, the opposite of a paralyzed person basically, probably touched a lot of people back then even more (he had a horse accident and got paralyzed from the neck down in his early 40s).

 

There is nothing wrong with not losing hope. Medicine's impotence doesn't necessarily have to translate to despair though. My analogy has been that of getting lost in the wilderness. The rescue chopper not being able to find you doesn't mean that you have to give up. You still can try to find your way home by picking up little clues here and there. (I know, staying put till the rescue reaches you is the best policy in normal situations). Will that make any difference in the context of ME/CFS? Maybe, maybe not. But that at least gave me a tiny bit of sense of purpose, at least when I was not knocked out, and kept me moving. That in turn made life a little bit more bearable in otherwise bleak circumstance.

 

Certainly not. But hope based on what feels like (at least to me) a false premise isn’t my cup of tea. I base my hope on DecodeME, SequenceME, etc. My doctors give me no reason to have any hope - if they were in charge I would have been profoundly severe.

My life doesn’t become unbearable if there currenlty are no solutions to my missery. But I’m in no position to dictate how others should feel regarding this topic. My way isn’t the correct way, it’s just mine.

 

It was a great documentary Wyva - my wife and I watched before xmas and found it moving and tragic with overt similarities to ME/CFS, with so many people struck down capriciously in the prime of life and capability/potential.

Gosh that's quite a cultural divide! His accident in 1995 shook the world, as so many had grown up with him in the late 70s and early 80s and he was much admired. Children, their parents and grandparents had gone to the cinema to see Superman 1 and 2 (though a bit like the Alien series, we don't really talk about 3 onwards).

I had a related experience running a clinical meeting recently where, for reasons, a reference to Elvis was a mandatory response. Except only I and the other consultant were onboard and the 8 juniors in the room had never heard of Elvis Presley. Honestly, kids today…

 

I was born in 1995, so that might explain why I don’t know the story. We have something similar in Norway. A footballer (soccer), Dagfinn Enerly became paralyzed after an accident during a match that ended in a draw. I attended the match because my local team would have won the national top league for the first time in forever if they won the match. We barely talked about it after, because everyone were worried about Enerly.

 

I agree, nobody needs false hope. At the same time though, I don't think the rescue chopper is coming for us any time soon; it could well be the choice between die waiting or try to find the way back home on our own, as unlikely as the possibility may be. That's why I'm an advocate for trying anything and everything as long as they are safe and cheap. But then, I'm sure people are already doing that, so there probably isn't even a point in saying it...

 

As long as it doesn’t interfere with acceptance.

It seems like it’s part of human nature to want to do things. Sometimes the best solution is to not do something.

There’s a quote from business management that I stumbled upon today:

There is nothing so useless as doing efficiently that which should not be done at all.​

 

Totally. "Hopeful acceptance" that some patients have been talking about could be a good compromise.

 

MThanks for the link! I’ll see if I can find some time to read about it

 

I’ve read the page and skimmed a few others. It feels like a very mixed bag. There are ‘success stories’ that describe people that got better, and one person partially attributed it to volunteering at a church, a supplement, a chiropractor and staying positive.

I’m quite opposed to only labeling recovery as ‘success’. Recovery is not an option for many, so success could just as well be to achieve some kind of quality of life, even if the life is very limited.

Some healthy people get burnt out by always moving the goalpost. They never reach their goal. I’m not sure it’s beneficial to always chase recovery if it’s unattainable.

 

They should be offering realistic hope and emotional support. My ME doctor told me 30 years ago to try to take it day by day and get adequate rest between activities. Obviously it wasn't what I wanted to hear back then but now I understand what me meant.

 

Regarding hope:
Too much focus on hope can mean patients don't adapt e.g. get mobility aids. But also that health professionals won't help patients adapt e.g. supply disability aids and accommodations.

An example of that on steroids can be seen in comments by Peter White on the draft version of the previous NICE guidelines

https://meagenda.wordpress.com/2007...g-the-nice-guidelines-for-cfs-me-tom-kindlon/

 

I stopped reading after a few paragraphs because it made me feel sickened. What an utterly disgusting view of ME/CFS and disability.

 

And for anyone who doesn't know, he has been very influential in the ME/CFS field. And had seen lots of patients for 15-20 years before writing this including running the NHS CFS/ME service for a portion of England. He's not some random doctor.

 

P D White diagnosed me with Fibromyalgia and recommended GET and CBT back in these days.

“Luckily” the physio dept wasn’t actually set up for GET (I had two sessions; 1. Do these exercises. 2. Did you do them? Ok, just keep doing them and increase the reps) I just had the psychological warfare of CBT.

My recent ME/CFS diagnoses all reference that I met the criteria for ME now, and since then, and that I have always had ME for 15+ years.

I would have been better not seeing him.

 

Yeah, nobody knows if those with "success stories" recovered by chance alone or by what they did. I think the take-away from "hopeful acceptance" philosophy is the recognition that "whether I recover is out of my hands" but still having some "confidence that there would always be things I could do to improve my situation, even if I didn't recover fully." This may as well be delusional optimism that we humans are famous for. But it rings true for me as I'm constantly theorizing and testing to figure things out by picking up bits and pieces. I think that is particularly important if you buy into the theory that each ME/CFS case have its own personality (aka each patient is different).

edit: added the last sentence.

 

I don’t think that’s categorically true. I’m not saying that you believe so either.

Optimisation is one of my favourite topics, so I’m very familiar with the search for ‘better’. But I’ve learned that the search comes with a cost, and the cost sometimes outweigh the benefit.

There’s also the question of when something is good enough. At some point, the possible added benefits become too small.