Long Covid in the media and social media 2022

A mass disabling event: The effects of long COVID don’t stop at the individual

https://www.dailykos.com/stories/20...-t-stop-at-the-individual?utm_campaign=recent

 

Everyone's an activist, most just haven't lived the experience to make it come out yet.

There is mention of a group of physicians with LC that are baffled by the BPS chokehold on the issue. Seemingly out there, not talking in public, until yesterday. This is not very useful, silence will not move things forward.

https://twitter.com/user/status/1582493217701826560

 

How about I transcribe this for those lack the time or health to watch:

Dr. Mason-Whitfield: I really want to apologize to you too, on behalf of some of my medical colleagues because as senior clinicians. We are being laughed at by some of our colleagues in clinic, but we're quite stroppy doctors and we can get through that. But, as a group of clinicians, we are dispairing at what is happening to non-medical patients. And Mikayla, that should never have happened to you. It's happened to me, from a neurologist. I wasn't able to retort back to him because I sounded like a zombie and I couldn't speak. He thought I was anxious. And you both deserve an awful lot better than that. And I despair of what is happening within the medical profession as well, who are just utterly overwhelmed. And even the ones I would expect to be behaving in a better fashion are completely unable to do so right now. So it's easier to just push people away.

Maddie is absolutely correct about the long Covid clinics. These should be medically-run clinics that have then access to all hospital specialist clinics, whereas in reality, even if you do have a GP or doctor-run clinic, they try to refer to specialists and are then refused. So the gaslighting's not just happening to the patients: it is also happening to the GPs. I have GP colleagues who phone me for advice on how and who to refer to and who's working privately that can possibly see their patient because they are being refused all referrals. This should not be happening. It's great that we have lots of long Covid clinics. But they are not doing what they say on the tin.

Some of the funding that has been used for research in the UK has gone to some of the most dubious research you can imagine, such as "does talking therapy improve long Covid symptoms?", such as "does Slimfast weight loss powders improve long Covid symptoms?" We need proper biomedical research happening that is happening around the world and is not happening in the UK. And the UK are ignoring the research that's happening in various other countries because it didn't happen in the UK.

Edit: Arrange paragraphs better

 

What we need is physicians like this sticking their necks out and publically countering this narrative in the media and among their colleagues rather than worrying about the damage to their reputation.

 

https://twitter.com/user/status/1583488280649244673

 

Extremely annoying to see the endless loop of saying the same things while badly wanting to keep a separation:

https://twitter.com/user/status/1583448500972290050

 

I am very much looking forward for that attention and the effort that it implies, when it takes a different form than "we hope that the scraps of our work may trickle down to you but we will make zero effort at it, also did you know that unlike ME, LC is not just fatigue?".

https://twitter.com/user/status/1583463315795083264

 

Personal essay on CNN website:

Opinion: Doctors didn’t believe that I had Covid-19. I found a way to make them listen
Opinion by Chimére L. Smith

https://www.cnn.com/2022/10/17/opinions/long-covid-health-care-smith/index.html

 

Cardiopulmonary Tests in Long COVID Offer Some Clues, Pose More Questions

https://www.tctmd.com/news/cardiopulmonary-tests-long-covid-offer-some-clues-pose-more-questions

Thread on the research discussed in the article is here:
Use of Cardiopulmonary Exercise Testing to Evaluate Long COVID-19 Symptoms in Adults - A Systematic Review and Meta-analysis, 2022, Durstenfeld et al

 

There are perfectly good treatments for chronic fatigue, at least as far as I am aware - rest, and improvement in working/living conditions so that rest can actually be achieved without dire financial and social consequences. If fatigued - rest.

Thing is no one seems to give any thought as to why someone may be suffering from chronic fatigue, only, in some cases, how to 'treat' them, or more likely penalize them if they aren't bulliable into 'ignoring' it.

A problem comes when idiots think that chronic fatigue is the sem thing as CFS, ME, or ME/CFS, or mix them up, and conclude that as there is no treatment that works for ME/CFS that there is no treatment for chronic fatigue.

Which IMO is as idiotic as saying that as there is no treatment for decapitation that there is none for neck ache (assumign there is a treatment for neck ache, and that it doesn't self resolve every time).

 

On a lighter note, some art:



Notice how GET is listed on the same level as all the nasty symptoms and loss, alongside gaslighting and the fantasy LC clinics. I don't think that even cancer patients would describe chemotherapy or their treatment at the hand of medical professionals alongside all the awful stuff cancer does, since it's actually a solution worth suffering through. It's genuinely hard to find any comparable failure out there.

Credit:

https://twitter.com/user/status/1583021795682439169

 

In Cleveland and beyond researchers begin to unravel the mystery of long COVID-19

https://www.cleveland.com/news/2022...-to-unravel-the-mystery-of-long-covid-19.html

I've not had time to read this, just skimmed it, but didn't see any mention of ME/cfs.

 

Long covid in children on Swedish TV this morning:

TV4 Nyhetsmorgon
Stor studie om barn med postcovid: ”Behöver bedöma varje barn individuellt”, 13 min
https://www.tv4play.se/program/nyhe...höver-bedöma-varje-barn-individuellt/13797506

 

Thread

 

A rare Long Covid article from Norway where research director at the Norwegian Institute of Public Health, Signe Flottorp, actually seems to acknowledge the phenomenon. She's still sticking to a biopsychosocial approach though and says there's no need to test for antibodies for Covid-19 because it will have nothing to say for treatment, as it's possible to have the same symptoms without having had Covid-19.


Google translated quote:

Infectious diseases caused by both viruses, bacteria and parasites can cause long term issues. It can affect patients who have had kissing disease (mononucleosis), Q fever or the diarrheal disease giardiasis.

- It is known that several patients who have had exactly these diseases have later developed ME (Chronic Fatigue Syndrome). Having had an infectious disease is often a triggering factor for getting ME.

Why does someone get it?
- The short answer is that we don't know why some people experience late effects, while most people recover completely. There are several theories that are being researched. When the body encounters a virus it does not recognize, the immune system is activated. For some, this alarm does not go off, says Flottorp.

Both biological, psychological and social conditions can play a role. The brain can interpret the signals incorrectly and this can contribute to the persistence of the symptoms.

https://www.aftenposten.no/norge/i/...-med-utmattelse-og-hjernetaake-etter-covid-19
google translation: https://www-aftenposten-no.translat..._sl=no&_x_tr_tl=en&_x_tr_hl=en&_x_tr_pto=wapp

 

A reply on the thread .

https://twitter.com/user/status/1583456066243006465

 

https://twitter.com/user/status/1558190386463625217


Post copied to Is Long Covid a type of ME/CFS? Discussion thread

 

Deaths and hospital admissions are falling, so does this mean that the virus is less severe?
The BMJ asks the experts

Is covid-19 really getting milder?
The short answer is no. Covid-19 is still a deadly disease, having killed almost 1.1 million people in 2022 at the time of writing. There remains a high risk of hospital admission and death for anyone without prior immunity. With some populations still largely unexposed to the virus, such as in China, and variation in the types of vaccines used in different places, it would be cavalier to call covid-19 anything but serious.

“It’s really hard to compare the severe disease aspects of [variants] because the immunity of our population is so different,” says Steve Griffin, associate professor at the University of Leeds. “When people call omicron mild, yes, there’s probably a lesser tendency for it to go deep in the lungs. But if you think about the clinical impact of it, because of its massive prevalence, even though it’s got a lower chance of causing the sorts of severe disease we’re talking about with acute covid-19, the actual clinical impact is still very, very marked.”

David Strain, senior clinical lecturer at the University of Exeter Medical School, points out that covid-19 tends to make other diseases worse. “It doesn’t matter what those other diseases are,” he told The BMJ in August 2022. “Patients who’ve got longstanding Crohn’s disease are coming in with exacerbations of their Crohn’s or their coeliac or their arthritis.”

Monica Verduzco Gutierrez, professor and chair of the Department of Rehabilitation Medicine at the Long School of Medicine in San Antonio, Texas, also emphasises that even mild covid-19 could cause long covid, with lingering symptoms and debility.

She adds that we’ve yet to fully understand the impact of reinfections. A study of the health records of six million people held by the US Department of Veteran Affairs, released as a preprint in June,1 suggested that people who had a second or third covid-19 infection had considerably higher rates of heart disease, kidney disorders, and other health problems during the first 30 days of infection, as well as in the months that followed, than people who had been infected only once.

...

Is long covid the real worry?
Yes, says Griffin, describing the still high levels of virus circulating as “a real worry.” He adds, “I don’t think we should just pretend that prevalence doesn’t matter. And that’s why I really quite strongly disagree with the ‘living with covid’ strategy. I think it’s fundamentally wrong. It’s disregarding vulnerable people. It’s disregarding long covid.”

A report issued in July by the UK’s Institute for Fiscal Studies estimates that one in 10 people who develop long covid stop working, generally going on sick leave rather than losing their jobs altogether. The report suggests that, as long as the prevalence and severity of covid remain at current levels, the aggregate impact is equivalent to 110 000 workers being off sick.4 Griffin adds, “If you look at the risk groups in terms of profession, things like teachers, social workers, healthcare workers, bus drivers—these are the people more likely to develop long covid because they’re obviously in person facing roles.”

“We’re breeding long covid with all of this,” says Topol. “It’s really unfortunate that we’ve seen this response, which is to just let it rip. It’s not acceptable. In my view, too many have given up the fight, and that’s sad because we know of really good measures that are innovative, that we have the foundation for, which we’re not advocating and we’re not putting priority and resources.

“We’re decreasing funding when in fact we should be investing, because it’s a very wise investment. The ability to get ahead of the virus will save us inordinate amounts of cost later.”

https://www.bmj.com/content/379/bmj.o2516

 

Long COVID: how lost connections between nerve cells in the brain may explain cognitive symptoms

For a portion of people who get COVID, symptoms continue for months or even years after the initial infection. This is commonly referred to as “long COVID”.

Some people with long COVID complain of “brain fog”, which includes a wide variety of cognitive symptoms affecting memory, concentration, sleep and speech. There’s also growing concern about findings that people who have had COVID are at increased risk of developing brain disorders, such as dementia.

Scientists are working to understand how exactly a COVID infection affects the human brain. But this is difficult to study, because we can’t experiment on living people’s brains. One way around this is to create organoids, which are miniature organs grown from stem cells.

In a recent study, we created brain organoids a little bigger than a pinhead and infected them with SARS-CoV-2, the virus that causes COVID-19.

In these organoids, we found that an excessive number of synapses (the connections between brain cells) were eliminated – more than you would expect to see in a normal brain.

Synapses are important because they allow neurons to communicate with each other. Still, the elimination of a certain amount of inactive synapses is part of normal brain function. The brain essentially gets rid of old connections when they’re no longer needed, and makes way for new connections, allowing for more efficient functioning.

One of the crucial functions of the brain’s immune cells, or microglia, is to prune these inactive synapses.

The exaggerated elimination of synapses we saw in the COVID-infected models could explain why some people have cognitive symptoms as part of long COVID.

https://theconversation.com/long-co...e-brain-may-explain-cognitive-symptoms-192702

Original study pdf:
https://www.nature.com/articles/s41380-022-01786-2.pdf