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Fatigue can shatter a person: Everyday tiredness is nothing like the depleting symptom that people with long COVID and ME/CFS experience
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- Title
- Fatigue Can Shatter a Person
- Authors
- Ed Yong
- Published
- Jul 27 2023
- Word count
- 3479 words
There's a YouTuber I watch, Physics Girl; real name Diana Cowern. She's a science communicator and has a kinda high-energy, bubbly personality. But she got COVID about a year ago and then developed ME/CFS. She's literally bed-ridden now. Can barely lift her head up or even speak from the videos that her friends and family have been posting to keep fans apprised of her situation. It's sad. She went from super vibrant and fun to just lying in bed sleeping or resting. Often with an eyemask, because she can't even handle light. It's crazy.
Yeah, that’s such a sad situation, especially with it all happening so soon after her wedding. And even more unfortunately it’s apparently become so bad it’s life threatening now too:
An Update On Dianna's Health from four months ago.
(By Simone Giertz, a friend of Diana’s and another fantastic YouTuber)
P.s. to help support her: https://www.patreon.com/physicsgirl
The last update that I saw was that it was getting better. Still worse than you could have imagined, but less worse than you could have imagined than it was before. Really sad. She doesn't just need the mask, she also (usually?) can't even wear clothes because they irritate her skin too much. Hard to believe it's possible.
Chronic fatigue really hollows a person out. Every little task is transformed into something grueling to be endured - even traversing the short distance across one’s room, standing up out of a chair, eating, taking care of a pet, sleeping. Everything to do with personal hygiene is its own nightmare; notice the prevalence of very short hair amongst the chronic illness population.
I’m quite glad this issue is being forced to the forefront of society’s mind even as I feel pity for those affected. If nothing else, perhaps this new scrutiny will lead to a push of reforms and ingenuity in tackling an old problem.
I have narcolepsy, which causes chronic fatigue, and your comment about short hair is spot on.
You try to trim anything from what you need to do at your worst, and minimize the 'bad' time. I take my first round of meds half an hour before i even wake up; i have several alarms, including one that vibrates inside my pillowcase for bad days. I have an over-ear alarm that goes off if my head nods too far forward during the day.
It takes years of work to actually start living with chronic fatigue, and a LOT of stuff one takes for granted becomes 1) something you need help with 2) something that costs money.
I'd be happy to share my tips and tricks with anyone dealing with it, because 'shattering' is accurate.
The first time I learned about chronic fatigue syndrome was because of Michelle Akers around the 1999 Women’s World Cup. She testified to Congress about it in 1996. It’s scary and sad how debilitating this condition can be for people.
I've been recovering from chronic fatigue syndrome for the past 4.5 years. It was really bad at the beginning, though I wasn't bedridden as I've read some people are. I used to love being active and working out. When I first got sick I had to take a nap after taking a 10 minute shower. I couldn't work and had to take medical leave for 2 months.
Over the past few years I've slowly gained some of my life back, though I still have progress to make. I can currently do a 30-45 minute workout 4 days a week. I also work from home 5 days a week.
What helped me was realizing that there's (often) a very strong mind-body connection when it comes to fatigue. I originally got CFS due to getting mono. As time went on, my brain stayed in fight or flight mode and learned that fatigue is a way of retreating from what it perceived to be danger.
Now, when I feel fatigue, I ask myself what emotions am I trying to cover up or what am I scared of. More often than not the fatigue goes away.
Just wanted to share my experience in case it helps anyone :) Happy to answer questions if anyone has any.
You've given me some food for thought here.
I have experience with interpersonal abuse, and I've called the bouts of immense tiredness a type of response to emotional shock. Usually it happens when something scary happens (another abusive interaction, or interaction with the abuser), or something is triggering the emotional responses.
I never realised this is might qualify for the label of 'fatigue' in the medical sense.
Strong emotions + narcolepsy absolutely cause me to have sleep attacks and increases fatigue, FWIW, and is definitely a known, documented problem.
I do not have narcolepsy, but the abuse has never been a secret, and I feel like I've described my situation to enough professionals that someone should have mentioned this to me.
As it stands, I now have a better way of describing my reactions.
I think a lot of medical professionals are absurdly dismissive of both fatigue and that emotional exhaustion. I had symptoms of narcolepsy for ten damn years before i was diagnosed, it really jacked up my life before anyone took me seriously, unfortunately.
There is a well established link (I believe) between a viral infection and subsequent CFS (indeed, I think Post-Viral Fatigue Syndrome is almost synonymous with CFS), but I caution against your 'mind over matter' mentality your advocate here.
I suffered from PVFS during my undergraduate degree, the point where I missed assignment deadlines and completed my three year course over four years. During my time away from study, I too managed to 'lift myself' out of PVFS and began regular exercise which I found to help immensely. On reflection, I was almost certainly suffering from depression - where malaise and fatigue was a symptom.
The article is positing that there are physiological differences in those suffering from CFS that a 'mind over matter' approach does not help.
(Note: I’m using the royal “you” in this comment)
Absolutely. I definitely advocate getting checked out by medical professionals and seeing if there are any physiological causes. Explore those options to make sure you’re doing everything you can.
However, if all of the physical options are exhausted (pun intended), I do believe that looking at emotions could make a big difference. As you said, depression or other suppressed emotions can cause fatigue. I’m not advocating for “mind over matter” in the sense of powering through the fatigue. You should do the emotional work to understand what you’re really feeling, why you’re feeling it, and why you’re suppressing it.
And you’re correct - I technically was diagnosed with post-viral chronic fatigue syndrome but it mostly ends up being referred to as CFS/ME, at least in my experience.
Multiple Sclerosis can also cause debilitating fatigue. Thanks for the article.
All of the autoimmune diseases and a huge amount of chronic illnesses too. Anything inflammatory is very tiring for the body, and especially for the brain (hence the brain fog).
My medication largely controls my symptoms now, but once a month when the meds start to wear off I’m reminded that yeah, I actually am sick, and the fatigue hits like a train.
Yes, my sister in law has it. My brother in law literally sets a timer for some family visits (depending on how toxic the people are) so she doesn't crash.
I have long covid and I've just realised I should do the same thing.
My mom has CFS. Came out of a bacterial infection combined with pneumonia and Lyme disease somehow - we still don't know.
Even getting a doctor to listen to her that something was wrong was torture. We went to 11 or 12 different specialists, did so many different tests, and 90% of them just told her nothing was wrong and it was in her head, to the point that she began to believe it, and think she was crazy. When we finally found a specialist who actually listened to her and agreed something was wrong, she burst into tears just from relief.
I've watched a woman who was ridiculously healthy and active, who used to play sports with me, go biking and hiking, loved being outside, turn into a shell. Some days even walking down the stairs means she has to sit down on the couch and take a 2 hour nap. And the mental toll this has taken on her is immense. It's really hard to see and to understand, even when I've seen her going through it for 4 or 5 years.
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I had(have?) ME/CFS for 3~4 years after getting a series of bacterial infections and it's absolutely horrible. I was never bedridden but I did get terrible post extertional malaise and couldn't walk for more than 15 minutes without a 2 hour rest afterwards.
Fortunately after a long series of N=1 experiments to build up a better understanding of the properties of my illness and using pre-clinical research I was able to almost completely cure it, but it took a lot of time and energy.
Anything you'd recommend?
Likely ME/CFS has many etiologies. ME/CFS is hard to solve overall but for a single person with enough determination I believe you can make progress. Because the etiologies are varied it's hard to recommend anything specific.
What I did was do a series of experiments using the results of the previous ones to work out which ones to do next. Some of the experiments I did were like low dose naltrexone, tonsillectomy, quercetin, rapamycin, etc (none of these worked for me, these are not recommendations or disrecommendations).
I'm quite convinced ME/CFS is solvable, we just need to find the right lever(s) to tweak.
My impression also - fair point. I'm doing the same but in a long-Covid context.
ME/CFS and long covid are likely the same "disease" in the sense that long covid etiologies should be a subset of ME/CFS etiologies, IMO.
I don't doubt that also - I look for ME/CFS materials when looking for treatments, and some of the treatments I have tried have a basis in pre-Covid experiences of post-viral fatigue syndrome. Also, my symptoms now a pretty much textbook ME/CFS!
Yeah it makes sense hey. I could see long covid being different to ME/CFS for a few months post infection but if it continues for long enough my guess is that the full ME/CFS disease state starts.
I was enjoying my ME/CFS given viral resistance for years until I cured it then I promptly caught covid.
Exertion isn't just exercise, though. It's also having a shower, or reading a recipe for dinner, or being in class.
I am very aware of this, having had issues with those kinds of things too.
The author really articulates the nuance of M.E./C.F.S. very well. It’s incredibly difficult for non-sufferers to understand. I’m fact, it’s difficult for sufferers to understand since it’s seems to make so little sense on the surface.
I’m very glad to see this being covered so competently in mainstream media. I’m also happy that I came across it on Tildes. Great post OP.