Ed Yong Articles on Long Covid & ME/CFS

Exertion is seen through a physical activity lens.
Cognitive and emotional exertion are more difficult to gauge and can impact a lot more ( in our experience ) .
This tends to be less well appreciated .

 

Agreed. The reason I gave up advocacy for almost a year (and only write stuff occasionally now) was due to this cognitive hurdle and worsening. I could do so much without physically over-exerting myself on the advocacy front but cognitive PEM just kills me.

 

This is why I feel any references to "spoons" ought to be retired permanently.

Some people who were open minded enough to try and understand what it's like to live with chronic illness now assume that people know how many spoons they start the day with. Why wouldn't they? It's what the spoon theory (which isn't about ME) appears to say.

At best it's been hugely unhelpful.

 

Here is an excerpt from Ed Yong's latest newsletter:

..........
Two newsletters ago, I mentioned my last piece for the Atlantic--I resigned last week for those who missed that news--which is about what "fatigue" really means for people with long COVID, ME/CFS, and related illnesses.

Whenever I write about these conditions, I get waves of emails from people who say that they finally feel seen, heard, and validated--sometimes after years or even decades of disbelief. Such messages are gratifying, but they also feel like a horrible indictment of our societal capacity for empathy.

But with the new piece, something slightly different happened. Alongside the usual messages, I also got a wave of notes from people who are themselves healthy and able-bodied, but who finally understand what their chronically-ill loved ones are going through, and who, armed with that new knowledge, will show up for said people in a better way.

It is hard to express how much that means. I always intended these pieces to act as empathy bridges--tools that long-haulers could take to medical appointments, send to family group-chats, and use to open up conversations with people in their lives. I become more hopeful when that model actually works, and even more so when long-haulers--who, I'll remind you, have energy-limiting illnesses--don't have to do the hard work of initiating those conversations themselves.

Of course, this model only works if people can actually access the work, and diseases like long COVID often leave people in financially difficult positions where magazine subscriptions can be unfeasibly costly. So if long-haulers, anyone with related chronic illnesses, or any of their family, carers, or doctors, need to read my long COVID or MECFS pieces and cannot afford to, email edyong210@gmail.com and I'll send you a copy. I did this work to help people.

..........

 

https://buttondown.email/edyong209

 

These two paragraphs are key to me. Is I noted further up this thread my parents finally understood me. I'll talk about this some more with parents, family members etc. But the thing is, if they understand it, they can make others understand. I've heard my parents try to explain ME/CFS to other people but failing to put it into words, now I think they easily can.

Consequentially, if we go somewhere and people ask questions about it my family members can step in and explain, saving me some much needed energy. My own social circle is very small, but the people in it have pretty large social circles and they do give updates to people that know me about how I'm doing. They can now do so with much more accuracy.

I'm hoping this not only leads to acceptance but also to commitment in getting me and other patients better through donations for example.

 

"As a medical term, fatigue seems suspiciously unspecific. Is it just the common tired we all feel, but extra? Is it more like a bad, long day? A state of mind? This lack of clarity made me assume that “fatigue” was a medical mystery and thus impossible for doctors to diagnose or treat. In this episode of Radio Atlantic, former Atlantic staff writer Ed Yong disabuses me of that idea. I was surprised to learn the medical establishment actually knows quite a bit about the mechanisms of fatigue. What often gets in the way of understanding or treating it can be based more in bias than in an absence of knowledge."

Podcast and transcript, https://www.theatlantic.com/podcasts/archive/2023/08/fatigue-can-wreck-you/675030/

 

Trial By Error: DecodeME Team Describes Study Sample; The Atlantic’s Ed Yong Covers PEM; STAT Busts NIH’s Stumbling Long Covid Efforts

https://virology.ws/2023/08/24/tria...stat-busts-nihs-stumbling-long-covid-efforts/

 

I often feel that I have been stumbling around the ME Maze for a long time, made much more difficult as if I have one leg strapped up so having to hop, blindfolded and with one arm tied behind my back.
(Obvs only an analogy)

Maybe this isn’t in right place? Or even a useful expression. Just delete if inappropriate.

Maybe it’s because I am in a tough place atm 12 days on from my third COVID bout . The last Covid infection was July 2022 and that caused my level of functioning to be roughly halved. This time again my energy is drained so maybe this post helpful to warn of circulation of new SARS variant in U.K.
……or feel free simply to delete this if not seen as useful?

 

Uhhh, they do not. It has been distorted, misrepresented and maligned for a long time. Still is. But there is no medical understanding of the mechanisms of fatigue. And ME/CFS is not fatigue, and neither is PEM. Fatigue is a multi-system, a whole organism, issue, there is no specialty of medicine that does that, and generalists know even less, stuck with old 19th century nonsense of the biopsychosocial model.

Now, we do know a lot more about prevalence and impact of what gets commonly reduced to fatigue, but there is still zero understanding of the mechanisms. What follows is a discussion of dysautonomia, reduced blood flow and mitochondria, which may be part of the mechanism, but it's still widely disputed, and we still have zero respect for it.

Anyway the discussion appears quite good but this is always annoying, especially as medicine continues to essentially be useless whenever they don't understand the biology, and here they obviously and completely do not even come close to. The main issue is that they dismiss all other types of evidence, choosing instead to go with pseudoscientific nonsense.

It's not just a lack of understanding, it's a preference for absurd magical explanations that soothe their ego and make them satisfied that they're doing their job, even when they're explicitly refusing to. They're OK with failing at their duties, as long as it complies with job requirements that incentivize them not to bother, two wrongs that don't make a right.

 

Posts moved from the Long Covid in the media thread


Ed Yong opinion piece on Long Covid and ME/CFS in the New York Times.

Reporting on Long Covid Taught Me to Be a Better Journalist

https://www.nytimes.com/2023/12/11/opinion/long-covid-reporting-lessons.html

it may be paywalled for some people.

 

The Ed Yong piece is probably the best opinion piece I have ever seen about ME/CFS. Here's a link for those who don't have a subscription: https://www.nytimes.com/2023/12/11/...GhON.s75HamWRJeia&hpgrp=c-abar&smid=url-share

 

Definitely deserves to be widely shared.

 

Thank you so much for this link!

 

The ever amazing Ed Yong. He has shared link to the guest essay also in an email newsletter today, of which he writes:

Beyond a mere reflection on my experience, I hope that this serves as a guide to reporting on patients with chronic energy-limiting illness, a call to do more such reporting, and a mission statement about why such work is necessary and what it can achieve. It’s really about journalism as a whole, and how my long Covid work made me re-evaluate some of what I had internalized about my industry’s values and practices. It forced me to do better. I hope this piece inspires others in the same way.

 

Ed Yong,
New York Times Opinion piece 12/11/2023

"Reporting on Long Covid Taught Me to Be a Better Journalist"

(temporary free-access)

https://www.nytimes.com/2023/12/11/...e_code=1.FE0.Oheh.Ofc6stWGiHko&smid=url-share