Ed Yong: Articles on Long Covid, 2023

It also has plenty of good quotes from Keller, Systrom, Putrino, and probably a couple I'm forgetting. The difference is that it's about illness, not the medical conception of it, but who else but the patients would know that anyway? Doctors love to say that patients are the experts on their illness, we're the only exception to that. Well, discriminated chronic illness in general, not just ME/CFS.

 

So Ed Yong is leaving the Atlantic. Twitter thread worth reading.

https://twitter.com/user/status/1684970608302706689

 

https://threadreaderapp.com/thread/1684970608302706689.html

 

So many powerful posts on this thread. I can definitely relate to this feeling of catastrophic loss or absence of personality. Most days I feel utterly disconnected from the rest of the world, as if I'm not a real person. I absolutely dread socialising or even workplace conversations. Other people talk about going on vacations, theatre, movies, concerts, books they've read etc. and I'm just sitting there feeling like an alien. These things seem incomprehensible to me. Doing any non-essential activity or having any interest or hobby is impossible. Inconceivable actually.

 

The problem isn't an inability to be interested in things or people but the difficulty in developing these interests.

As person that does not leave the house for long, and usually only once per day, there are certainly fewer opportunities to form interests, but this is not the limiting factor.

Ed Yong's tweet presenting his article has now been retweeted 4600 times with 1.7 million views.

 

Edited to add:
Tweet by Julie Rehmeyer:
An audio version of ed yong
very very powerful piece on fatigue and PEM can be downloaded for free heredropbox.com
Ed Yong - Fatigue Can Shatter A Person_01.wav
Shared with Dropbox

 

worth quoting in full.

 

Ed has posted this on Twitter, which shows how valuable good articles like this one can be.

"Whenever I write about long-covid or ME, I get waves of emails from chronically ill folk who feel seen/heard. But with this piece, I'm *also* hearing from healthy people saying they finally get what their loved ones are going through. Which feels amazing."

"I'd always hoped these pieces could function in this way, that they'd act as an empathy bridge--a tool that long-haulers could use to open up conversations with dismissive, skeptical, or well-intentioned-but-confused people in their circles."

 

Tbh, he put it into words better than I ever could've. Even when I read other patients accounts here, I feel like I know what they mean but that non-ME people won't. Yong really nailed it here.

 

I've been thinking recently to myself about how the fundamental, underlying 'framing' of the condition is what needs to be nailed - ie people thinking 'back to' principles of 'chronic fatigue' as a basis has always been an unhelpful way of picturing it and certainly doesn't scale to either the different severities or how they operate e.g. someone mild might be able to seem to live at a normal pace but then crash whereas the 'chronic fatigue' idea gives some mental picture to me that others think how tired someone seems in front of them and how fast they move in that moment is the disability.

But I'm torn between it being defined as 'energy-limiting' versus that need to underline that it is illness and horrible debilitation. Which then when you think about debilitation and what underlies the 'level of disability' full-circles the paradigm needed back to 'energy-limiting' because there seems to be a line at around the bottom of severe where what you have is less than what you need just to lie in bed unable to move forevermore, which people seem to be unable to imagine (and begin their scale at some level where of course you can get to the loo and eat and it is just about trips out and exercise which is so far off the mark).

This does feel like a key thing to nail because its current conceptualisation is so misleading and off-beat and I think part of the reason why if someone finally reads some of these analogies it must be a massive penny-drop of 'gosh I've been blinkered into totally the wrong territory'.

I do wonder as well whether an issue is the term fatigue, the bad definition of it not having a sub-term - if what we experience when we can't literally support out own arms isn't actually also 'fatiguability' or 'fatiguability-related' rather than fatigue [if not then it feels to me that is based merely on the technicality of it not being the arm muscles but the central system that feeds them] or is it some contradiction in defintiion where it is 'fatigability' until you've then overdone it at which point having 'exhausted' the muscle or whatever is apparently defined the same as 'the feeling of being tired' that can be meleded up witht he types where you just need a cup of coffee or a jog on the spot and it goes away forever with no long term effects.

We live under vile tropes others seem to think are acceptable to utter like 'lie in bed all day' said with a wry smile as a substitute for those who are so ill they are stuck trapped unable to be anything but horizontal for hours (days, weeks, years for some) and the vulnerability and awfulness of that.

And we have horrible symptoms and pain that mean the opposite [of such people's insinuated 'must be nice to get so much rest/not be busy'], so when that person is having a lovely night's sleep we might be in raging PEM with our legs raised and revving in huge pain whilst all our other joints ache and are hunting for cool sheet and at the same time we need the loo every 30mins despite being too exhsuated and debilitated to not be horizontal. Not to mention the migraine like symptoms and all the rest feeling genuinely more unwell than they probably ever felt with any illness they've ever had.

Energy-limiting it certainly is, and needs to be understood much better from a disability perspective because [there seems a current trend at the moment for norms to engage themselves in 'ennui' and 'busy-making/I'm so busy habit'] wasting someone's little bit of energy they have for a task is a callous habit some are doing, and they justify it to themselves by saying if they had the energy set aside to do that in the first place then they weren't disabled then don't wait around for the aftermath of them then being debilitated for days and not having got that essential task done.



EDIT: that 'not so sneaky' tactic is to me the equivalent of kicking a disabled person's cane out from under them when others aren't watching then telling onlookers 'whoops they are losing it and need another lie down', just to give themselves some weird competitive personal boost (as if it makes them a better person to have 'won' over someone else, something I've never understood but witnessed in too many).

The BPS'ers misogynist-y 'fatigue in their head --> get tired --> are 'distressed' misognyinist, game-playing tropes (not to be forgotten women can be some of the worst misogyinists to other women) and the sadly warped-CBT/toxic positivity 'I don't/can't care about others' attitude (and then spout 'why do they care what others think' when they've actually done or not done things based on it) has provided a perfect cover for pretending this is both acceptable and the problem of the disabled person simply by engaging 'ad populus' ergo 'its OK because I've found lots of horrible others who also have the same stinky attitude so we must be the normal ones' ... in my opinion.

It has really managed to hit home when they engage the mental picture of treating us like over-tired toddlers rather than disabled people who've just had a cane kicked out from under us, rude tropes and then looked at on the floor obviously disabled by someone who deluded tells themselves they 'can't see it' and can't make themselves care' and so convert a fair reaction of 'what's wrong with you' into fake assertions of that person must be 'distressed' rather than rightfully telling you that you can't do that in order to carry on dismissing reality from themselves. So yes, the 'tiredness' and 'fatigue' and 'chronic fatigue' TOY needs to go and be taken away from all of this.

 

MassME Annual Meeting
October 28, 1-3 pm ET
We are excited to announce that Pulitzer Prize winning science writer Ed Yong will be the guest speaker at our Annual Meeting this fall.

MassME.org is one of the better state organizations for us. This meeting will be on zoom.

 

Yong's article is already making a difference in my life by giving me words to explain myself. Conversation with my mother yesterday:


Her; wouldn't it have been better if you had come on holiday?

Me;It would have triggered severe PEM.

Her: PE?

Me: PEM. Post-exertional-malaise.


My symptoms would have gotten a lot worse for a long time and I would have gotten extra symptoms. Like feeling very poisoned. It would have taken away the possibility to do anything for weeks.


End of conversation.

 

I'm gonna get PEM sometime in the coming weeks. When they ask me why I wasn't more careful thanks to Yong I'll have the words to explain:


I don't always know when I'm gonna get PEM. It happens a day or several days later. So that makes it very hard to avoid.


Also I already live like I'm training for the Olympics, my only reward for that is that I don't get worse. Some empathy please.

 

I'm getting a bit emotional, which to me is very rare. But I've explained it to my father this morning and it's the first time I feel truly understood. Both my parents signaled this morning that they really understood it. I'm sure I'm gonna have to regurgitate it a couple of times seeing how they're both getting forgetful but this is so huge...

This is absolutely huge for advocacy if used properly. My parents have kept me alive all this time and help me with everything, but they never fully understood, they just did. Now they understand. I'm gonna make sure I get the message about PEM across to everyone I know. Will make my life easier, but hopefully will also serve as a means to get the word out about us.

 

I had similar thoughts. The misunderstanding seems to work like this:

The exertion intolerance and PEM are ignored or misrepresented as fatigue.

The fatigue is misrepresented as chronic fatigue that does not change much. It is then assumed that the way a patient looks at any given moment is representative of how sick they are.

 

I would argue that most, including some ME/CFS researchers, do not understand that;

1. we start with reduced energy levels before we do anything at all.
2. doing anything costs us more energy (at least in relation to the amount of energy available to us).
3. that doing too much almost certainly causes a delayed reaction which is excessively disabling.
4. that we can only know in broad terms how much energy we have, and how much exertion is too much.
5. that, no, we can't just build up our energy levels.
6. and that all the above will vary from patient to patient.

Anybody who is normally healthy has such an excess of, and easy ability to regenerate, energy, compared to us, that it is extremely hard for them to understand our experience; we might as well be aliens to some people.

 

Ordinary people can just keep going for hours or most of the day, with little impairment. If they become fatigued it's not a major problem and they can recover easily.

 

Well, sure, but you could easily argue that each item in my list needs a qualifier like that.