Long Covid in the media and social media 2022

https://twitter.com/user/status/1579789643499081729

 

WHO chief urges immediate action to tackle ‘devastating’ long Covid (Guardian)

This post has been copied to join a series of Guardian articles on a new thread:
Series of Guardian articles on Long Covid, October 2022

 

More push-back against the claim that Long Covid isn't a problem in Australia:

 

An article in the Washington Post about the Covid in Scotland Study:

I'm struck by the number of comments on this related reddit thread from people suffering with symptoms following covid infection. Most would not seem to identify with the "Long Hauler" label yet many are significantly affected.

[It reminds me of feedback I've had from people after I've told them that my ME was triggered by EBV infection. The amount of seemingly healthy and successful people who have said "I've never been the same since having EBV" is quite staggering.]

Link to the thread on this study:
https://www.s4me.info/threads/outco...id-in-scotland-study-2022-hastie-et-al.29943/

 

Please respect the do not participate link here but the doctor with a humbling journey with long hauling story has hit reddits medicine sub and the discussion has gone as expected, lost of dismissal of long conditions and saying there is no knowledge on long covid or even if it exists again by plenty of flaired (confirmed by that subs process) participation:

 

It's groundhog Day ..

https://twitter.com/user/status/1580526939688738816

 

Long covid may set you back a decade in exercise gains
Scientists say that exercise intolerance should now be considered a new symptom of long covid

https://www.washingtonpost.com/wellness/2022/10/13/long-covid-exercise-symptoms/

eta: thread on study https://www.s4me.info/threads/use-o...d-meta-analysis-2022-durstenfeld-et-al.29966/

 

Yup. It's time to say it: medicine isn't learning and has miserably failed the test. It's just not happening. A few good apples out there, but still barely enough to fill a school gymnasium.

We keep hearing from friendly doctors that everyone they know who works in healthcare thinks it's BS. And seeing comments confirming that. It's almost universal dismissal. Which is usually how systemic failure happens.

I still think it'll move forward, medicine is doing everything they can to maximize the harm and thus is both the problem and the solution, but the whole profession has thoroughly and completely failed at this. At the 2.5 years mark, all the excuses have crumbled into dust.

 

I've heard of some long haulers who get taken seriously by some docs. Medicine is learning. It's just at the pace of a glacier, and it needs to be at the speed of a bullet train. GET and gaslighting are harming people. It's even slow slow that I'm like, "Hello! I'm only gonna live so long! I want treatments in my lifetime!"

 

In my very unscientific watching of the medicine subreddits and forums I have seen no sign of softening of the position of physicians. The few descanting voices have always been there, drowned out by the quorum and 95% majority believing its all illfuencers.

 

In the first 6 months to a year? Sure. Whatever. Literally the barest minimum expected. Still terrible, all things considered, when the entire point of experts is that they can understand and act faster, preferably in advance. Being able to predict and prepare in advance is basically the best of what expertise can do, what's generally expected.

2.5 years later? No. The "this is new" excuses are over. Those are still the excuses, the same as from the start, same as day 1.

If the computer profession were as bad as medicine, on January 1 2000 people would have been woken up everywhere in panic, wondering what the hell is happening to their systems crashing left and right, because this entire industry of professionals would have been sleeping through it, then have neglected it for months and months, clueless as to what could possibly be happening.

We did not sleep through Y2K. We dealt with that shit like pros so well that people are asking what it was all about. This is what real experts do. By definition. They don't sleep through problems, especially not huge ones.

 

TBH many many people were out, drinking, eating, etc., not using computers, when the Y2K bug was supposed to hit.

Most of the rest were probably watching TV.

I of course could neither be bothered, afford to go out, nor see any point in celebrating a purely arbitrary non event.

I was, probably, asleep.

It's cheaper, more environmentally friendly, and far less pointless - quite simply a more productive use of my time.

 

Wisconsin Public Radio "Medically maligned Chronic Fatigue Syndrome holds clues to long Covid"

Great 20-minute interview with Dr. David Kaufman and Jamie Seltzer with a Q&A session.

Description:
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex chronic illness that has long been under-researched and poorly funded, has striking similarities to long Covid. We delve into what the two conditions reveal about each other, and how the mass-disabling event of long Covid may shed light on those who have suffered with ME/CFS for years

https://www.wpr.org/listen/2017496

 

Medscape Will Fatalism Kill the Needed Response to Long COVID? Commentary by David Putrino, PhD

quotes:
Given the enormous numbers of people who develop long COVID symptoms following acute infection, and the general air of fatalism that we are observing toward long-term public health policy to prevent SARS-CoV-2 infection, it's clear that we have failed to adequately sound the alarm about long COVID.

As a result, the long-term health of millions of Americans could be forever changed.

...
The only silver lining in our shadow pandemic is the emergence of a new age of health advocacy. Patient-led research organizations for long COVID have begun to actively collaborate with seasoned researchers, patients, and patient advocates from other complex chronic illness areas, such as Lyme disease, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and Ehlers-Danlos syndrome.

 

When it matches with the patient experience I think its as representative as the patients who are saying they have a problem on social media. You either dismiss both or neither and that also means dismissing the opinions of all those on S4ME about their condition and treatment as well. Not willing to go there myself, its as representative as any online study (more error but still indicative).