Long Covid in the media and social media 2023

It seems more likely that the right idea has simply not been put forward yet. The ideas put forward so far are mostly repetition the established wisdom.

 

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.

 

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.

 

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).

 

https://twitter.com/user/status/1625485436582854656


Thread on the study here:
Preprint Long Covid manifests with T-cell dysregulation, inflammation and an uncoordinated adaptive immune response to Sars-Cov-2, 2023, Yin et al

 

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).

 

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.
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.

 

Anyone with access who can post article?

https://www.theatlantic.com/ideas/a...d-symptoms-chronic-illness-disability/673057/

https://twitter.com/user/status/1625852192304558080


https://twitter.com/user/status/1625853067106336776

 

I had a free article left.

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

"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:

I haven't done a great job summarizing this article but I hope these extracts are helpful.

 

The haunting brain science of long Covid
By E. Wesley ElyFeb. 16, 2023

https://www.statnews.com/2023/02/16/the-haunting-brain-science-of-long-covid/?utm_campaign=rss

 

Some waking up . It could have been so different....


https://twitter.com/user/status/1626397450628915201


This post has been copied and a series of posts moved to this thread:
Causes of death among patients with Chronic Fatigue Syndrome, 2007, Jason et al.

 

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:

Then they interviewed David Putrino who minced no words about the cause:

 

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!

 

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

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