Long Covid in the media and social media 2023

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We could be doing exercise test studies where some intervention is given to see if it changes the response to the test. Over time as more studies of this kind are done it could lead to some understanding of what is going wrong.
 
Jonathan Edwards said:
Maybe this is an illustration of something that I have speculated before about - that the reason why nobody has any idea about ME is the same as the reason why nobody has any idea about LongCovid. Simply because it is too hard. We don't have the understanding or the means to solve this type of illness yet. Of course, it must be good to have all this focus on post-viral illness, but the first lesson is that it hasn't been cracked before because it isn't easy.
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ME does not really behave how we expect illnesses to behave:
  • It doesn’t fit at all comfortably into how we currently subdivide bodily systems, which means no one relevant medical specialism owns it though one irrelevant specialism, psychiatry/psychology, has been allowed to claim it and pontificate with no meaningful evidence base.
  • It varies between and within individuals so much that it is hard to pin down what it actually involves. Though variation does occur in many conditions, ignoring that variation does not prohibit reasonable understanding of those conditions. Any understanding of ME must include understanding that variation
  • Exercise or exertion makes the condition worse, but it is an article of faith in modern medicine that fitness and exercise are universally beneficial.
  • At a very superficial level people with ME are not prevented from doing things as a one off, we are not prevented from walking in the same way that someone with spinal cord damage is, rather we ‘choose’ not to do things to avoid the negative consequences of doing them. Unless the clinician is familiar with severe and very severe ME they can misunderstand the limits of ME as a personal choice rather than a disability.
  • There is often a gap between cause and effect in ME, in that PEM may not appear for one or more days after the exertion that triggered it. Humans have particular problems spotting and understanding such delayed consequences, for example people steering supertankers require additional training in order to deal with the fact that navigation requires starting and stopping steering well in advance of the vessel responding.
Long Covid is even more confusing because we see the damage resulting directly from the acute infection both with and without concurrent ME presumably trigger by the Covid-19 virus. I don’t think it is surprising that medicine struggles to understand ME and Long Covid, but it is profoundly depressing how many are wilfully choosing not to attempt to understand, actively ignoring the confusing aspects of ME/Long Covid with ME or even refusing to believe it exists.
 
Jonathan Edwards said:
Maybe this is an illustration of something that I have speculated before about - that the reason why nobody has any idea about ME is the same as the reason why nobody has any idea about LongCovid. Simply because it is too hard. We don't have the understanding or the means to solve this type of illness yet. Of course, it must be good to have all this focus on post-viral illness, but the first lesson is that it hasn't been cracked before because it isn't easy. I doubt the old chestnuts like neuroinflammation, viral persistence and autoimmunity will get us anywhere. More likely Maureen Hanson's urine metabolites or GWAS. Something nobody has predicted. Maybe Edinburgh should put in for money to repeat the GWAS on 10,000 LongCovid cases.
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Nailed it in too many ways - I'm hoping that GWAS will be a way in i.e. to focus research on productive areas in MECFS. I'd like to see this application @Simon - "Edinburgh should put in for money to repeat the GWAS on 10,000 LongCovid cases".

To me a lot of people labelled as long covid would have been labelled MECFS pre-pandemic i.e. they have the same underlying illness. Therefore, a LongCovid GWAS may benefit people with MECFS --- even people with Lyme (PTLD).
 
Jonathan Edwards said:
it hasn't been cracked before because it isn't easy. I doubt the old chestnuts like neuroinflammation, viral persistence and autoimmunity will get us anywhere. More likely Maureen Hanson's urine metabolites or GWAS.
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It's just so tragic that all the 'research' done on exercise was so geared towards proving 'it worked' and that 'any adverse effect couldn't possibly be as a result of the treatment'.

Had they done similar, or any, before/after testing (like with urine metabolites) and accepted there was a problem and possibly followed up on any findings, we might be a lot further along.
Even if the results had just been recorded somewhere, the data might have shown something over the decades.

(Although having said that, I doubt the likes of Wessely,Sharpe, White and Chalder ever had the necessary scientific know-how to conduct any trustworthy investigative research).
 
Sly Saint said:
It's just so tragic that all the 'research' done on exercise was so geared towards proving 'it worked' and that 'any adverse effect couldn't possibly be as a result of the treatment'.
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Didn't the PACE study researchers send out a memo to the physiotherapists after it started stating that if any of the GET participants suffered a setback it wouldn't be due to the GET as this works however they may wish to consider if a component of the treatment may be responsible and adjust the therapy accordingly.

It was like issuing a statement saying "my car did not hit that pedestrian", "however I will concede that maybe a component of my car hit them".
 
Why we need a deeper understanding of the pathophysiology of long COVID
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00053-1/fulltext

Syndromes like Long COVID are not new. Other PAISs, such as myalgic encephalomyelitis and chronic fatigue syndrome and post-treatment Lyme disease syndrome, have overlapping symptoms with long COVID.
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Thus, the inclusion of individuals with other forms of PAIS as comparison groups in long COVID research is important for broadening overall understanding and widening the impact of this research. Finally, the current knowledge surrounding long COVID would not be possible without the hard work and dedication of patient-led communities striving for answers.​

Somehow I still expect several of the studies that will push the same old failed psychosomatic model to be published in the Lancet.
 
Jaybee00 said:
Anyone with access who can post article?

https://www.theatlantic.com/ideas/a...d-symptoms-chronic-illness-disability/673057/
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I had a free article left.

I don't want to post the whole thing due to copyright issues but here's an excerpt.

The fact is, no one—including doctors (especially doctors, dear God, these doctors)—knows the right things to say to those of us who have long COVID, because no one seems to be thinking about this wretched condition in the right way. Nor does anyone seem to understand the unique psychological suffering associated with this condition. It’s hideous—arguably worse than some of the very worst of our physical symptoms. Which, let’s face it, are already pretty grim.

Shall we begin? For starters: Asking “Are you doing any better?” doesn’t help. One has to think of long COVID as a chronic illness—cause unknown, cure unknown, recovery timetable (assuming there is one) unknown. I had to explain this early on to my parents. While I appreciated their frequent texts inquiring about whether I’d seen any improvements, they were a certain recipe for misery. I wasn’t; I’m not. I’m on month eight and still declining in many crucial respects. “How are your symptoms today?” is a far better question.

A related-but-different point: Long COVID symptoms often change. This syndrome is wily, protean—imagine a mischief of mice moving through the walls of your house and laying waste to different bits of circuitry and infrastructure as they go. That’s what I’m experiencing. In the past month, I started developing blood-pressure problems when I stood up. Good times! The month before that, I became breathless when I walked. Why? No clue. But now it’s a new feature of my life.
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"Month eight and still declining." Boy, I remember when 8 months of illness seemed like a long time.

Anyway, She goes through her own story listing symptoms and how they change. She also mentions feeling shame and having depression.

Last paragraph:
If you encounter them [people with Long Covid], remember that they are suffering. Remember that they don’t want to be pitied. Remember that they’ve each developed their own idiosyncratic strategies to cope, and that they don’t need to be told to do more or to do less or to approach things differently. Be gentle. Disease eventually ensnares all of us; when it happens to you, you’ll crave the same.
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I haven't done a great job summarizing this article but I hope these extracts are helpful.
 
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The haunting brain science of long Covid
By E. Wesley ElyFeb. 16, 2023

Matt Fitzgerald used to bike up and down 3,500 feet through the Santa Ana Mountains on three-hour rides just for fun. Now, nine months after being infected with SARS-CoV-2, the virus that causes Covid-19, he can’t muster walking on flat surfaces for 20 minutes without days of exhaustion.

“My long Covid life remains terrifying,” he told me. “Last weekend I washed my car, dried it, put it back in the garage. Then I got violently sick, could hardly get up to get food. I was unable to read or even call my mom. I’m a shell of myself. But my physical issues aren’t half as bad as my brain problems. It’s hard to describe. You can say brain fog, but that doesn’t come close to doing it justice.”

Another patient of mine, Barbara Nivens, was forced into early retirement as a result of long Covid. Four months after recovering from a mild case of Covid-19, “My memory began to fade,” she told me. “I struggled cognitively as a manager and then HR came after me.”

It’s no wonder that depression and PTSD rates are up in people living with long Covid. There are no approved therapies for the physical or cognitive disabilities that now plague 65 million people around the world, a conservative estimate given the degree of undocumented cases. It is now clear from U.S. and U.K. investigations of approximately 2,000 previously hospitalized Covid patients that six months later more than half have problems managing finances and paying bills as well as completing everyday activities like preparing meals, bathing, getting dressed, or walking across a room.

But what exactly is going on inside the brains of these people from a biological and pathological perspective?
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https://www.statnews.com/2023/02/16/the-haunting-brain-science-of-long-covid/?utm_campaign=rss
 
US broadcaster PBS aired a very tactful and empathetic segment on long Covid on the news last night.
People living with long COVID explain how the disease changed their lives
It's 10 minutes long and includes a transcript. People with LC were candid about their physical, emotional, financial, and social suffering:
Michelle Lewis said:
Physically, long COVID has absolutely just ruined my life. I mean, it really has. There's no other way to say that.

Many days, I still can't even get out of bed. I now have chronic migraines. I can't walk very far at all without running out of breath. I'm constantly getting dizzy. I'm constantly having to go to the E.R. because I have fallen somewhere. My joints hurt all the time, all the time.

That's something that people don't realize is just how much pain is involved in long COVID.
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Then they interviewed David Putrino who minced no words about the cause:
David Putrino said:
But what we know for sure is that long COVID is an organic disease. So, we understand that the virus has really changed things within the body. Now, there are three or four different ways that the virus can change the body's physiology and start to lead into the symptoms that we're experiencing with long COVID.

But what we understand very clearly is that this is not a psychological illness. This is not a psychosomatic illness. This is an illness that has been caused by the body responding to a previously unknown virus. The immune system has become very dysregulated as a result of the virus, and it's leading to these highly debilitating symptoms.
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rvallee said:
Why we need a deeper understanding of the pathophysiology of long COVID
https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(23)00053-1/fulltext

Syndromes like Long COVID are not new. Other PAISs, such as myalgic encephalomyelitis and chronic fatigue syndrome and post-treatment Lyme disease syndrome, have overlapping symptoms with long COVID.
10
Thus, the inclusion of individuals with other forms of PAIS as comparison groups in long COVID research is important for broadening overall understanding and widening the impact of this research. Finally, the current knowledge surrounding long COVID would not be possible without the hard work and dedication of patient-led communities striving for answers.​

Somehow I still expect several of the studies that will push the same old failed psychosomatic model to be published in the Lancet.
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Trial By Error by David Tuller
Correctives from Putrino & Iwasaki (and Others) to the Long-Covid-Is-Psychosomatic Claims

quote:
The Iwasaki-Putrino essay pokes holes in the argument that the failure to have already unravelled all of long Covid’s pathophysiological mechanisms means that this outpouring of reported symptoms is largely the result of “psychosocial strain” and related constructs.
 
Merged thread
Also discussed up thread here

The haunting brain science of long Covid

Interesting article on Long Covid. Actually mentions ME too! I particularly liked how the chap with ME post Covid describes Brain Fog!

“At work my brain is just begging for rest. I struggle with finding words and completing tasks in a timely manner. It’s the worst. I’ll be in a meeting and know exactly what I want to say before I say it. I’ll start saying it and I’ll get to a word, and I just cannot think of the word. I’ll just be like, ‘Give me a moment,’ and I’ll go through my brain cycling through words. This week it was consistent. I couldn’t think of the word consistent. I kept thinking it was coincident or concentric or constant.”
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I watched the PBS report posted here. Impressive work. It begins with patient excerpts and they really capture the overall impact well. Very impressed, PBS Newshour remains one of the best news program out there. Worth watching, although nothing new for most here.

Impressed by Putrino as well. As far as I can tell he's one of the few who didn't need to experience it or have a loved one do to actually get it. Not even minor red flags, truly a unicorn. The only disappointment is the lack of context, the fact that this is a set of old neglected problems that medicine could always have done something for, and instead did everything against.

All this really shows how trivial it was to bury small-scale epidemics of this, even a backdrop of millions. There are gaps in medicine so huge you can fit over 100M people as long as they trigger machine thresholds for alarms or some test or another. So basically anything smaller than disabling 100M and leading to horrible quality of life and early death could be found in those gaps. Maybe it could even fit a billion. At this point is there really even a limit?
 
One day I was standing at the grocery store checkout with a red cabbage on the scale. It didn't have a number sticker so I was trying to enter the name on the keyboard. After 5 seconds or so of not getting a name I set it aside and ran other items through. When I got through all the items I put the red cabbage back up and still had to stand and casually look around for 20-30 seconds before the name came to me. It isn't an unusual ingredient, I use it all the time.

Four hours later my partner came home and when I told the story I still couldn't remember red cabbage. It took days before I could recall the name again.

This happens to me quite a bit with single words. I lost "mitochondria" for quite a while when talking with my doctor. Even using "powerhouses of the cell" the name was gone for weeks. Eventually the word comes back with proper recall and another word becomes the target of disappearance.
 
From the American Medical Association :banghead:

https://www.ama-assn.org/delivering...h-patients-knew-about-long-covid-19-brain-fog

What doctors wish patients knew about long COVID-19 brain fog

Brain fog is not new

“It’s a term that’s been around for a while, but we’re just hearing about it more now because it is one of the more common symptoms of long COVID,” Dr. Pannel said, noting that “people also refer to brain fog when they’re sleep deprived or experiencing a migraine.”

“Before COVID there really wasn’t this diagnosis of brain fog,” Dr. Halpin said. “There were cognitive issues caused by a variety of different things, whether it was brain injury, dementia, brain infection or other condition.”
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Exercise your body and mind

“Sometimes it's tough for people to just start exercising if you don't feel well or if you have fatigue. But it’s about starting slow,” said Dr. Sousa. “Sometimes it may be five or 10 minutes, but make sure you put yourself in a situation where you can see how your body responds to exercise so that you’re not completely fatigued the next day.”

“Ultimately, getting up to 30 minutes five times a week of aerobic exercise is helpful,” he said.

“A lot of patients with brain fog are feeling anxious and it’s making them feel down, so meditation, yoga, any of that can not only address the memory and brain fog component of it, but also the mental health part of it,” Dr. Pannel said, noting that “you get anxious because you don’t know when it’s going to go away or if it will go away.

“But also try to stimulate and work your brain,” she added. That “means you can do crossword puzzles, read books, learn new skills, all of that to challenge your brain.”
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