Long Covid in the media and social media 2023

JemPD · Jun 3, 2023

SNT Gatchaman said: ↑

Quoting for truth. I stopped listening after that era - it's been a shadow of its former self to put it kindly. My wife and I used to look forward every week and eagerly await its return from its regular hiatus.

ETA Honestly some of the best days of the before times were dropping mooring lines, motoring out, getting the sails up and settling down to the sound of lapping water, Sandi's commentaries and Jeremy's rants.
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I was actually going to say that Jeremy would have made mincemeat of the whole 'we know who's going to get LC' rubbish, but i didnt like to predict the opinionsof a man who's no longer with us. I must admit to fantasising about him going on a rant in support of PwME/LC, its certainly a rich pool for satirising, for one who is good at that!

Midnattsol · Jun 4, 2023

A new "how did we do with regards to the covid 19 pnademic" report has come out here in Norway, and one of the authors have been retweeting the interview with Iwasaki on infection sequelae and have had some comments about the importance of caring for long term ill
https://twitter.com/user/status/1665267512374640640

She has been supportive of pwME in the past.

Mij · Jun 4, 2023

Long covid survivor claims marathon run 'a victory for all the family'
Thousands turn out for Cork City Marathon as runners celebrate recovery from long covid, finishing college, and much more

The Ballynoe runner was taking part in his first marathon in three years and yesterday marked a comeback from long covid for him.

Exhausted but ecstatic, Noel said: “I was two years out of running so I am delighted. I came in about 3:12.”

https://www.irishexaminer.com/news/...he Cork City Marathon,but also for his family.

mango · Jun 4, 2023

An article in one of Sweden's largest newspapers today. ME is mentioned. Prof Jonas Bergquist and BPS proponent/researcher Anna Andreasson are quoted.

Postcovid-gåtan – varför sätts vissas liv på paus?
https://www.svd.se/a/GMq4jV/gatan-postcovid-varfor-satts-livet-pa-paus-for-vissa

Auto-translate said:

The post-Covid mystery - why are some people's lives put on hold?

There are some reasons why post-covid occurs - and probably others that make the symptoms persist, says a Swedish researcher. symptoms persist, according to a Swedish researcher. But is post-covid even a single disease?
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Auto-translate said:

The figure of how many people got post-covid varies depending on how you measurements, but it is probably far from the one in three that was first feared. According to a large Swedish study of half a million people with confirmed COVID-19, two per cent were diagnosed.
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A comprehensive characterization of patients diagnosed with post-COVID-19 condition in Sweden 16 months after the introduction of the International Classification of Diseases Tenth Revision diagnosis code (U09.9): a population-based cohort study
https://www.ijidonline.com/article/S1201-9712(22)00612-9/fulltext

Some of them, unclear how many, have been sick for three years now. It is not yet clear how this group will get well. Perhaps it is difficult precisely because they should not be considered as a group, according to a growing number of people. For example, Jonas Bergquist, professor of neurochemistry at Uppsala University.
- 'This is why it is so important to develop effective, customised treatments,' he says. [...]

Jonas Bergquist himself is conducting a study involving people with post-covid and myalgic encephalomyelitis (ME). He is developing a method for imaging the fluid around the brain of patients with neurocognitive disorders, such as concentration and memory problems, and looking for biomarkers.

- "We are still in the collection stage and have not yet received samples from so many patients with post-covid. But I can see that there are both similarities and differences between the patient groups in terms of inflammatory markers," he says.

He hopes to develop a tool for making a diagnosis.
- But also to follow the the course of the inflammation in patients. In the future, the method could the method could be used to understand if the treatment is effective treatment, regardless of which treatment," he says.
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Swedish researchers at Karolinska Institutet will now test whether the suspected suspected viral reservoirs can be treated with an antiviral drug.
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imPROving Quality of LIFe In the Long COVID Patient (PROLIFIC)
https://clinicaltrials.gov/ct2/show/NCT05823896
ETA: Forum thread here.

- 'It is probably the case that we need to distinguish between factors that cause post-covid and factors that prevent the symptoms from resolving over time,' says Anna Andreasson, a researcher in psychoneuroimmunology at Stockholm University.

She is particularly interested in fatigue and tries to understand how the brain, immune system and behaviour interact to prevent fatigue from passing. 'When the immune system is activated, for whatever reason, you get tired,' she explains.
- But sometimes the immune system continues to be active even when the root cause is gone, she says.

Anna Andreasson says that fatigue can also remain even after an immune activation has ended.
- 'Much like pain can persist after an injury has healed. The fear of a setback is understandable, but it is also a burden that can both drive a stress surge and also cause you to refrain from doing things that would have provided energy," she says. 'This leads to a vicious spiral.'

- 'We also believe that fatigue can lead to changes in, for example, dietary intake and sleep patterns that further perpetuate fatigue,' she says.

In an ongoing study at Stockholm University, which aims to find individualised interventions for fatigue, the research team is now following a hundred people with post-covid for two years, as well as an equal number with exhaustion disorder and ME. This is because the researchers believe that there are different groups of patients with fatigue who can be helped in the same way regardless of the doctor's diagnosis.

The researchers measure substances that are released when the immune system is activated and hope to find out how, for example, diet can contribute to fatigue sometimes not going away. But also how sleep and psychosocial factors
factors have an impact.

- "Lifestyle-related measures such as improved diet and sleep are harmless and seem to be a necessary complement for some patients to achieve improvement," says Anna Andreasson.

Jonas Bergquist continues to look for biomarkers that indicate inflammation in the brain.
- "Maintaining factors are a possible idea, even though our measurement methods show more biochemical changes. But you have to be open to customising treatments for the individual and can't rule out rule out that CBT can work for some people, but it is difficult to prove it," he says.
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Forum thread about Andreasson's study here (was originally a ME study).

Sly Saint · Jun 5, 2023

‘Pacing’ for long COVID can help people cope, but there’s a tradeoff

Chronic fatigue associated with long COVID forces many people to rest and disengage from activities they used to do — but limiting your life can feel powerless.

This story is from The Pulse, a weekly health and science podcast.

Editor’s note: We’re calling the main subject in this story “Susana” to protect her privacy.

When Susana was growing up, she was pretty much an only child. Her two siblings were much older than her, and she often found herself roaming the world on her own and fending for herself.

“I was a latchkey kid,” she said. “And I think that when you grow up in that kind of environment, you kind of just feel like… you don’t need anybody else’s help.”

Susana eventually grew into a self-sufficient individual. She often carried out activities independently and avoided the need to ask for help. And as her personality blossomed, she became much of an adventurer — constantly interested in challenging hikes and roller derby competitions.

She thought of herself as daring. “I like to prove people wrong. If somebody tells me I can’t do something, I will show them I can.”

But this all changed in 2021 when Susana got a mild case of COVID-19, which later led to long COVID.

“I was practically bedridden for the first few weeks,” she said. “It was hard for me to lift my arms up. Then it was hard for me to sit up, and it was hard for me to eat.

Susana was experiencing chronic fatigue that usually led to excruciating pain if she tried to fight it. Her persistent symptoms proved to be a significant inconvenience in her life.

By the third month of her symptoms, she saw a specialist at the Post-COVID Assessment and Recovery Clinic at Penn Medicine in Philadelphia. The clinic was established in March 2021 to provide care for patients experiencing lingering side effects from a COVID-19 infection and to study the nature of long COVID.

“I expected an answer,” she said. “I expected to hear this is what’s happening to you, here’s how we treat it, and this is how long you can expect to get better. And that’s definitely not what happened.”

For Susana’s symptoms, the post-COVID clinic was unable to offer her a ‘cure-all’ treatment — but they did suggest ways to manage her fatigue. One was called pacing — as in pace yourself. It’s a long COVID strategy where the patient is active when they’re able and resting when they’re tired — rather than pushing through their symptoms.

Pacing sounds simple enough, but the strategy forces patients to quit activities that many people take for granted — like chopping vegetables for dinner or pushing a heavy door open. It’s like making a list of things to do and crossing off half of the list based on the amount of energy you have.

Susana tried it out. She no longer walked her dog as much as she wanted to, and she stopped making long grocery lists so that she could actually carry the items back home. She also retired from one of her favorite and satisfying hobbies, assembling Ikea furniture.

But there were times when pacing fell short. When she was totally exhausted — she had to ask for help — which was a difficult task for her. The independence Susana had embodied for most of her life was slipping away while she was coping with the effects of long COVID.

“Having long COVID takes all of that away,” she said. “Not just like the physical, fitness aspect, but like really being in control of your body and being independent.”

As months passed, Susana began to feel better. Her fatigue had lessened, and she could resume most activities after almost a year. It’s unclear if pacing helped with her symptoms as research is still being conducted on the method and its effectiveness on long COVID.

But then, history repeated itself.
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https://whyy.org/segments/pacing-for-long-covid-can-help-people-cope-but-theres-a-tradeoff/

ahimsa · Jun 5, 2023

Study finds 27% rate of long COVID in infected health workers

https://www.cidrap.umn.edu/covid-19/study-finds-27-rate-long-covid-infected-health-workers

A new case-control study of Brazilian healthcare workers (HCWs) suggests as many as 27% developed long COVID after infection, and multiple infections raised the risk. The findings were published today in Infection Control & Hospital Epidemiology.

Estimates of the prevalence of long COVID, defined by the Centers for Disease Control and Prevention as new, returning, or lasting symptoms persisting 4 or more weeks after initial COVID-19 infection vary, with some studies showing as many as 43% of infected people will have some lingering symptoms 1 month after COVID-19 confirmation.

Because HCWs have occupational exposure to COVID-19 and were vulnerable to infections the pre-vaccination era of the pandemic, they may be uniquely primed for developing long COVID.

The study is based on confirmed symptomatic COVID-19 HCWs who worked in a Brazilian healthcare system in Sao Paulo from March 1, 2020, to July 15, 2022. Symptoms persisting longer than 4 weeks after acute infection were assessed during 180 days of follow-up.
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Jaybee00 · Jun 6, 2023

Um ok. Am I allowed to be cynical here? I think people sometimes confuse prolific tweeting with making substantive scientific contributions.

https://twitter.com/user/status/1665781522429771778

https://twitter.com/user/status/1665756466131746816

SNT Gatchaman · Jun 6, 2023

I don't think her contribution to science is in question. Being an effective science communicator is an additional skill that benefits the science.

Personally I am pleased she has been awarded 2.5m Euros to further her research into ME/CFS and Long COVID. I am also pleased that she is an established researcher from a relevant field who is now investigating our disease. I agree you could be cynical about the fact that scientists need to have a profile to fund raise — money isn't just handed out by benevolent governments, regardless of the scientist's ability or the population's need. Although I believe she actually has received some of the RECOVER funding to evaluate paxlovid in LC.

Sly Saint · Jun 7, 2023

https://twitter.com/user/status/1666167339799269377

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Midnattsol · Jun 7, 2023

A quite good article in Aftenposten about long covid today. A swedish woman who have been ill since the end of 2020. Cognitive impairment. PEM. Talks about her situation, the long covid clinic she is at in Stockholm, and a doctor from the clinic is also interviewed. The Norwegian long covid association is interviewed about how it is in Norway (no specialist centers).

I did feel they made the Swedish situation look better than I get is the case from reading social media (and Swedes on here). Also find it a bit funny that it is noted how serious it is to lose 50% of your level of function, when in Norway this "mild" ME is not bad enough to give you disability for serious illness because it's considered- you guessed it - mild. The doctor made a weird comment on that LC differs from ME in that LC people get better over time, and that pwME don't have cognitive impairment or breathing issues... which is weird, but he did at least mention they are similar and that people stay ill for a long time.

Norwegian, as google translate and Aftenposten haven't been working for me lately: I Sverige blir long covid-pasientene behandlet på spesialistmottak på det fremste universitetssykehuset

Amw66 · Jun 8, 2023

Oh to have questioning like this on record .

https://www.youtube.com/watch?v=p2rCtaBBdwE

SNT Gatchaman · Jun 8, 2023

0:33 "So did you have evidence?"

0:43 "I'm still waiting. Was there an evidence base [...] to argue that it was safe to remove mandatory 5-day isolation?"

1:10 "Well that's interesting. I'm sure if you've got a policy of forced infection, I'm sure that's true"

1:16 "but did you lead the charge [...] to remove 5-day isolation, knowing it would lead to an increase in infection, re-infection, disability and death?"

2:03 "Well don't worry Dr. Woodruff is looking forward to having a chat."

<Discomfort intensifies>

2:55 "Do you think it is satisfactory - do you think it is responsible to allow the continued infection and re-infection of children with a novel coronavirus, that is vascular, that causes long term sequelae, brain damage, increases in childhood diabetes [...]"

3:58 <Discomfort intensifies> "I understand your point of view."

4:00 "No you don't. I don't think you do. I don't think you've allowed it to permeate your consciousness. Otherwise you wouldn't be conducting yourself this way as Premier."

The whole thing is worth a watch. (Sunlight is the best disinfectant.)

ahimsa · Jun 8, 2023

From The Guardian:

Long Covid can impair quality of life more than advanced cancers, study says

https://www.theguardian.com/society/2023/jun/08/long-covid-impact-quality-of-life-cancer-study

SNT Gatchaman · Jun 8, 2023

ahimsa said: ↑

Long Covid can impair quality of life more than advanced cancers, study says
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Thread for study: Impact of fatigue as the primary determinant of functional limitations among patients with post-COVD-19 syndrome (2023)

Sly Saint · Jun 8, 2023

Oonagh Cousins: Great Britain rower forced to retire with long Covid, but at peace with decision

Oonagh Cousins is accepting of the cards life dealt her but the emotions around what might have been remain raw.

Pre-selected for the Tokyo Olympics, her biggest ambition was on the verge of being ticked off when in March 2020, she contracted Covid.

Three years on, such have been the lasting effects of her diagnosis of long Covid, she has been forced to retire from rowing.
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She took a year and a half off training, a period of time in which her symptoms - mainly fatigue, though it's a word she feels underplays its severity - meant she could do little more than four hours of "basic tasks" a day like cooking or showering, a short walk at an absolute push.

But come September 2021, she felt she had "turned a corner" and started a slow, steady return, able to increase her load to the point at which her doctors gave her the all-clear and she was training 10-11 times a week.

"For most people with long Covid, that's like a million miles away," she notes. In late summer 2022, she felt it was time to return to the British Rowing programme.

"It was massive," she says. "It was such a victory but at that time, I think it was actually also my emotional blind spot, I was actually getting more ill at that point and I was ignoring the warning signals.
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https://www.bbc.co.uk/sport/rowing/65669929

rvallee · Jun 8, 2023

I think it was last year that this fund provided, in part by the founder of Ethereum (sort of a Bitcoin alternative but also more than that), allocated $5M to patient-led research on Long Covid. Proposals were recently submitted but I don't think there's a thread for this.

The whole thing will not be for Long Covid, but they are adding another $100M and LC will remain a priority focus:

Vitalik Buterin said:

Last year @CryptoRelief_ led by @sandeepnailwal allocated $100m to Covid research projects I wanted to fund Sandeep and I discussed and jointly concluded these and other projects are high-impact and need follow through grants. Hence we decided to put $100m more to these projects
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The most salient risks from Covid today are the very high number of people experiencing very-long-term symptoms (aka #LongCovid), and so Long Covid research continues to be a primary focus.
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The research thus far, including on cryptic lineages and wastewater studies, strongly suggests we should be looking at viral persistence as the deep cause of Long Covid.
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https://twitter.com/user/status/1666860085375643676

Cryptobros doing work that governments are too cowardly to do. Now that is the intersection of late-stage capitalism and late-stage medicine.

ahimsa · Jun 10, 2023

Sly Saint said: ↑

https://twitter.com/user/status/1666167339799269377

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For anyone who was not able to read this Boston Globe article due to a paywall here's a link that the #MEAction group shared in a recent email:

https://archive.is/tQZst

(tagging @Dakota15 who posted about this problem earlier in the thread)

John Mac · Jun 10, 2023

Tell us: have you been diagnosed with long Covid?
We would like to hear from people who have been diagnosed with long Covid – and for whom it has had a life-changing impact

Although the pandemic is no longer a global health emergency, the impact of long Covid continues to be felt by many. An estimated one in 10 people who contract Covid experience ongoing symptoms in the following months or years, which often include fatigue, depression, anxiety, breathlessness and brain fog.

With this in mind, we’re keen to hear from those who have been diagnosed with long Covid – and for whom it has had a life-changing impact. Perhaps it caused the end of a relationship? Or maybe it significantly disrupted your education and career path? Tell us about it below.
Share your experience
How has long Covid affected you?

https://www.theguardian.com/society/2023/jun/09/tell-us-have-you-been-diagnosed-with-long-covid

Amw66 · Jun 11, 2023

https://www.churchtimes.co.uk/artic...res/features/in-the-shadow-of-long-covid?s=09

Andy · Jun 11, 2023

Webinar: Long Covid: What Needs To Happen Next, 5th and 6th July

Click thumbnail for more detail or see tweet below.

https://twitter.com/user/status/1665767150693281796

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Long Covid in the media and social media 2023

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