Long Covid in the media and social media 2023

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InitialConditions said:
According to the Freeview online TV guide, there is case of long covid on tonight's episode of GPs: Behind Closed Doors at 7pm on Channel 5 (UK)
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It was a case in a young boy—headaches and tiredness since third(!) covid infection. A link with exertion was made, as his Mum said his headaches were worse after he's been to football. Doctor said this fits with long covid, and very briefly brought up the concept of pacing.
 
Been a long time but surely when ill anything that increases blood pressure is likely to cause a headache?

Things like pointlessly running around trying to victimise spherical objects may possibly increase BP in the living.

Dunno, not a doctor, but it seems possible, and normal, no need to invoke LC.
 
I suppose this article is a step in the right direction, however it completely glosses over the fact that there are virtually no specialists for people with ME/CFS in Australia, there is very little support and even getting a diagnosis can be insurmountable.

Their contention that Australians with ME/CFS have access to sensible help in managing their illness is ridiculous.

We can learn a lot about long COVID from years of diagnosing and treating chronic fatigue syndrome
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While some long COVID symptoms are unique (microclots, lung scar tissue, or organ damage due to acute infection), most resemble the clinically very similar disorder myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome.

While the term myalgic encephalomyelitis is preferred by many patients who have fought to have the illness recognised as an illness that affects the brain rather than just tiredness, we’ll use the term chronic fatigue syndrome here for simplicity.

As similar post-viral illnesses, there is much we can learn about long COVID from our years of diagnosing and managing chronic fatigue syndrome.
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Managing post-viral illnesses
Looking at how chronic fatigue syndrome is managed has proved useful in managing long COVID, with the current management guidelines closely mimicking each other.

This includes educating and supporting patients to manage and monitor their symptoms, rehabilitation from a multidisciplinary team (which may include physicians, physiotherapists, occupational therapists, psychologists and others), and modifying lifestyle and work routines.

Techniques often used in chronic fatigue syndrome are also likely to be useful in long COVID patients. These may include activity-pacing, sleep hygiene, pain medication, and increasing fluid and salt intake, which can help manage rapid increases in heart rate experienced by some patients when they get up from sitting or lying down.

It may also be beneficial to refer long COVID patients to clinicians with expertise in chronic fatigue syndrome, particularly for health professionals who are less familiar with treating post-viral fatigue syndromes.

Post-viral illnesses are not new, and long COVID may represent the latest addition to this family.
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Chronic fatigue informing long Covid treatment
Dr Sarah Annesley, Senior Postdoctoral Research Fellow in Cell and Molecular Biology, Dr Elisha Josev Senior Research Officer and Paediatric Clinical Neuropsychologist at Murdoch Children's Research Institute, Dr Michelle Tavoletti Adjunct Research Officer, La Trobe University

Long COVID reportedly affects about 10% of post-COVID patients, and describes a range of ongoing or new symptoms three months post-infection.

Given the COVID pandemic has infected more than 750 million people worldwide, it’s clear long COVID will create a significant burden on society for years to come. Australia’s parliament is currently undertaking an inquiry into long COVID, with hearings this week.

While some long COVID symptoms are unique (microclots, lung scar tissue, or organ damage due to acute infection), most resemble the clinically very similar disorder myalgic encephalomyelitis, more commonly known as chronic fatigue syndrome.

While the term myalgic encephalomyelitis is preferred by many patients who have fought to have the illness recognised as an illness that affects the brain rather than just tiredness, we’ll use the term chronic fatigue syndrome here for simplicity.

As similar post-viral illnesses, there is much we can learn about long COVID from our years of diagnosing and managing chronic fatigue syndrome.

https://www.latrobe.edu.au/news/articles/2023/opinion/chronic-fatigue-informing-long-covid-treatment
 
Yesterday I noticed two articles posted on forums not particularly frequented by long haulers, general public forums, discussing growing evidence of Long Covid and generally sequelae of Covid and the tone is really shifting, so many people have seen their health seriously degraded, or a loved one. Or several.

So many comments adding their own experience to it. More in general terms, there are few mentions of ME, dysautonomia or POTS, but many of the problems described are clearly typical chronic illness. Most with no support, healthcare is of no help.

It's hard to say how bad this all is since medicine is pretty much refusing to count so they don't have to do anything about it. But even far from the worst-case scenario, the reputational harm to medicine will be enormous for having allowed to happen on copious whiffs of hopium.

Usually on those articles there are a few comments. But lately it's more and on those two it was the vast majority when I checked last night. I had years of declining health before it got too bad, it sounds very familiar. I pushed through and didn't think much of it, though in part because I knew medicine is useless at this stuff.

/r/Coronavirus: Long Covid causing job losses and homelessness in Australia, inquiry hears

/r/EverythingScience: Three in five patients with long COVID had damage to at least one organ, a year after their initial symptoms
 
Fiona Lowenstein writes in Wired:
It's Fine to Never Meet IRL

quotes:

As high-risk individuals are marginalised from a society eager to ignore pandemic harms, tech companies must do more to expand accessible virtual spaces.

...

When the pandemic first began, many events and offerings became newly accessible, and relationship apps and social media sites exploded with activity. “All of a sudden, people were acting how I had to act prepandemic,” says Liz Weaver, a neuroscientist interested in interdisciplinary policy, health equity, and science communication, who lives with myalgic encephalomyelitis (ME/CFS) and describes herself as “homebound.”
 
Why Long Covid rehab must be very, very slow
When Judith first came down with Long Covid, in March 2021, she couldn’t imagine being able to return to her job: a demanding role in business development for a global engineering company. She suffered from fatigue, brain fog and breathlessness so debilitating that she had to ask her parents to care for her and her two children.

She counts herself lucky that, about six months later, she was able to resume full-time hours. It was the culmination of a careful increase in activity guided by an occupational health specialist experienced in chronic fatigue, provided by her employer.

“The support kept me restrained from increasing my hours too fast,” says Judith, 43, who did not want her full name published. “I had no experience of this condition — or any idea of what I needed to support me.”

She is one of 2mn people in the UK — about 3 per cent of the population — that the Office for National Statistics estimates is suffering from Long Covid. It defines Long Covid as a strain of the disease in which symptoms persist for more than four weeks, although most sufferers were first infected more than a year ago. For about three quarters of these people, Long Covid symptoms affect their day-to-day activities and, for one-fifth, those abilities are limited significantly.

Judith has also had relapses, brought on by Covid-19 reinfections, which have required her to temporarily reduce her hours. And her recovery is not yet complete, despite the progress she has made. But she has learned how to ration her energy, to keep her symptoms at bay.
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Practices adopted for other long-term conditions with overlapping symptoms, such as chronic fatigue syndrome, have proven effective for many Long Covid sufferers, occupational health experts say. A central concept in managing CFS is ‘pacing’, which warns sufferers against pushing themselves to the limit to avoid so-called boom-and-bust cycles. In CFS, as well as many Long Covid cases, overexertion is counterproductive. Experts say it is important to take an individualised approach because symptoms vary and, in some cases, returning to work may not be possible.
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https://www.ft.com/content/fb77b3ef-0ad6-4bc6-a44b-fd6e0bdfe846
 
Sly Saint said:
Why Long Covid rehab must be very, very slow



https://www.ft.com/content/fb77b3ef-0ad6-4bc6-a44b-fd6e0bdfe846
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That's not rehab, though. That's convalescence. Enough with this crap. Those resources are completely wasted just being there while some improve and others don't. This is all even more worthless than freaking homeopathy. It's literally built for the medical professionals to feel good. Somehow, despite being as useful as a potted plant in the corner. Why do they actually enjoy being less useful than furniture?

The need for medical professionals to feel that they are the ones who helped is ruining healthcare. It's so obvious that their involvement isn't worth anything. Why are they wasting so much while they refuse to spend where it counts? This is maddening misappropriation and mismanagement of public resources.
 
Have the odds of getting long COVID changed?

Here's what doctors know

Story at a glance
  • Long COVID is a broad term describing complication that can last weeks, months or even years.
  • However, as time goes on, the chance of getting long COVID seems to be diminishing, new research suggests.
  • The reasons include vaccination and prior cases of illness with COVID-19.
(NEXSTAR) – Nearly three years into the COVID-19 pandemic, we’ve learned a lot about the virus, and have developed vaccines and antiviral treatments that make the prospect of contracting the virus less deadly for most people. But one aspect of the virus that remains frustratingly mysterious, and scary to many, is the range of outcomes called “long COVID.”

Long COVID is a broad term describing complication that can last weeks, months or even years. Some people have shortness of breath, while others have damage to their senses of smell and taste. Some who suffer from long COVID experience debilitating fatigue and brain fog.

Researchers find 55 long-term COVID effects, these are the most common
“The odds of having long COVID, we do see that rate is going down,” said Michael Gottlieb with Rush University Medical Center, who co-led a recent study on persistent COVID symptoms.

The study found people were more likely to suffer prolonged symptoms if they caught COVID in the “pre-delta period,” compared to the delta and omicron waves of 2021 and 2022. However, the difference has nothing to do with the variants. It has everything to do with vaccination and repeat infections.

“It is generally accepted that, on average, later infections with the same virus are going to be somewhat milder, and have somewhat less of a risk of causing long COVID symptoms,” agreed David Dowdy, an epidemiologist at Johns Hopkins Bloomberg School of Public Health.

https://thehill.com/changing-americ...-have-the-odds-of-getting-long-covid-changed/
 
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