Long Covid in the media and social media 2022

Hutan · Jul 3, 2022

Two posts about BBC items about a person with ME/CFS' experience with the North Cumbria Integrated Care Trust have been moved here:
United Kingdom: North Cumbria Integrated Care Trust

John Mac · Jul 3, 2022

Children with 'long Covid' actually have a mental illness, suggest health chiefs

Government official told mother of child suffering from chronic condition that some children struggled 'to adapt to challenges presented by Covid pandemic'

Civil servant wrote: 'Whilst many children have shown remarkable resilience... there are those who have found this period especially difficult for their mental health and wellbeing'

The letter adds that children with 'serious mental health illnesses' will be offered face-to-face psychotherapy session

The phrase 'mental health' is used 15 times in the 470-word response. Long Covid is not mentioned

Sammie McFarland, 46, first wrote to the Prime Minister in April, urging more research into finding a cure and greater accommodation for children struggling to keep up in school.
Her daughter Kitty, 16, has suffered with long Covid for more than two years.

The ballet dancer still suffers from chronic fatigue and has often missed school.

Sammie, from Dorset, has since set up a charity, Long Covid Kids, which lobbies for greater support and awareness.

She says when she received a response to her letter – from an unnamed official at the Department of Health and Social Care (DHSC) – she was outraged.

'To suggest that children with long Covid are not resilient enough is hugely insulting, not just to my child but to all children with this chronic health condition.

'This letter shows that those at the heart of Government don't understand the condition at all.'
Click to expand...

https://www.dailymail.co.uk/health/...lly-mental-illness-suggest-health-chiefs.html

Sean · Jul 3, 2022

'This letter shows that those at the heart of Government don't understand the condition at all.'

And don't want to.

Lilas · Jul 3, 2022

Interesting article and report appeared this week on Ici Radio-Canada (French).
https://ici.radio-canada.ca/nouvell...ail-covid-longue-milliers-quebecois-symptomes

There are probably thousands in Quebec who have not fully recovered their abilities after contracting COVID-19. Even a year after infection, some are still very far from returning to work. And the science begins to understand that their rehabilitation is much more complex and more strewn with pitfalls than we thought.
Click to expand...

Geneviève never returned to work in her position as director of trade missions at Laval University. She is being closely monitored by a team of health professionals, as her symptoms are still numerous and, above all, incapacitating.
“ My energy limit is very, very low. I would say my battery is maybe at 10%. If I expend 12% energy, I experience post-exertional malaise. Symptoms come back, but in a really exaggerated way ", she says.
Click to expand...

Poor her, because of her disabling limitations, she had to go back to live with her parents at 36 years old... The article also reports the testimony of an occupational therapist working with people suffering from long covid and explaining why the return to work is so laborious for this clientele :

Why is it so hard? Because usual rehab practices don't work with people who have persistent symptoms of COVID-19. Getting them to surpass themselves is a serious mistake, says Ms. Théberge.

“ We say well, by reactivating, it will be better, we will go up. But with the long COVID, the opposite is happening. As soon as people push their limits a little too much, they fall back, they make their symptoms worse. People experience misunderstanding, a lot of distress, stress."
— Caroline Théberge, occupational therapist at the Iso-Santé Réadaptation clinic
Click to expand...

The journalist also highlights the worrying lack of precise data on the number of people affected in the Province. He mentions a recent study by the National Institute of Public Health of Quebec alerting to these prolonged absences in the health network which could even end up harming the care offered to the population.

* excerpts are translations

Sean · Jul 4, 2022

Why is it so hard? Because usual rehab practices don't work with people who have persistent symptoms of COVID-19. Getting them to surpass themselves is a serious mistake, says Ms. Théberge.

“ We say well, by reactivating, it will be better, we will go up. But with the long COVID, the opposite is happening. As soon as people push their limits a little too much, they fall back, they make their symptoms worse. People experience misunderstanding, a lot of distress, stress."
Click to expand...

This is encouraging. The reality is starting to break through.

rvallee · Jul 4, 2022

It would be the deepest irony if the stranglehold of this rotten ideology came to an end because too many medical professionals happened to experience its cruelty and ineptitude at the same time, happen to see what's on the other side of the looking glass. They don't seem to make the connection yet, though. This makes the whole "this is completely new and unprecedented" message so important.

I think it's more likely that they will carve out exceptions for themselves and leave everyone else rotten. At least at first. Which is really awful, considering the medical profession is entirely responsible for this disaster. But it won't work, there will be no fixing this issue for some. It will either be fixed for all or no one will be spared. Either everyone is protected, or no one is.

Long Covid forces 10,000 NHS staff off sick for longer than three months
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Health staff suffering from long Covid plan legal challenge against HSE
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https://twitter.com/user/status/1543996557820719104

https://twitter.com/user/status/1543611257282076675

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mango · Jul 5, 2022

The long covid specialist clinic in Uppsala, Sweden, is likely to be closed down.

Uppsalas postcovid-mottagning kan läggas ned – trots långa väntetider
https://amp.svt.se/nyheter/lokalt/uppsala/framtiden-ar-osaker-for-uppsalas-postcovid-mottagning

Auto-translate said:

Uppsala's post-covid clinic may be closed down - despite long waiting times

Uppsala's postcovid clinic opened in 2021 to help people who have fallen through the cracks with their problems after covid-19. But the clinic will probably have to close after the end of the year, as the state subsidy will end then. No new funding looks likely.

The waiting time for Uppsala's post-covid clinic is long, according to several people SVT has been in contact with. But Mikael Köhler, director of health and medical services in Uppsala Region, says patients will get better help by being sent to specialists.

So are you saying that a cohort clinic doesn't really fulfil its function anymore?

- Not at the moment, but in the future it might be when we know even more about what to use the post-covid clinic for, says Mikael Köhler.

What do you have to say to patients who are affected by long covid and who are worried about the closure?

- We have a lot of respect for the fact that you may have symptoms that we have to take care of, but we are doing this because we see that you can be better caught up where the knowledge and working methods already exist.

"Should raise ambition"

Tove Lundberg, president of the Swedish Covid Association, is critical of the proposal.

"We do not share the region's view and still receive testimonies from sick people who are forced to seek care in Stockholm to get help. Uppsala with its university hospital should raise - not lower - the ambitions for patients with severe post-covid. Learning will also be more effective in multidisciplinary clinics, as recommended by the WHO," she writes in an email to SVT.

In the clip: hear Mikael Köhler answer questions about why the post-covid clinic is being closed.
Click to expand...

Cilia lider av postcovid – oroad inför mottagningens framtid
https://www.svt.se/nyheter/lokalt/uppsala/cilia-lider-av-postcovid-kritisk-till-nedlaggningen

Auto-translate said:

Cilia suffers from post-covid - worried about the future of the clinic

Uppsala resident Cilia Johansson, 27, has been suffering from postcovid since 2021. She is satisfied with the care she has received at the postcovid clinic and is critical of the fact that it is likely to be closed down after the end of the year.

- It feels like crap, she says.

Cilia Johansson fell ill with covid-19 in February 2021. A few months later, her body and brain had taken such a beating that she was bedridden. In January this year, she was able to start sitting up for longer periods.

Today she is feeling better, although she is far from recovering. She suspects that she suffers from postural orthostatic tachycardia syndrome (POTS), which causes severe drops in blood pressure. In the autumn, she hopes to resume her studies, from which she has had to take sick leave, but it is uncertain whether she can cope.

- This is not what I wanted, this is not what anyone wants, says Cilia Johansson.

She believes that multidisciplinary clinics would have been the best option, as her symptoms, like those of many other post-covid patients, are varied in nature, which can make it difficult to know which specialist to refer her to.

In the clip: hear why she doesn't believe in the region's new plan for the patient group.
Click to expand...

She believes the plan won't work because no one knows which specialist doctors to send these patients to: neurology, cardiology, a lung doctor, there are no "fatigue specialists" or specialist in multisystemic diseases. She believes the multidiciplinary post-covid clinic is valuable because of the clinical experience: seeing so many post-covid patients enables the doctors to learn a lot about the condition, and to start develop knowledge about what usually helps and what doesn't, and so on.

In the video she also mentions that she gets a fever when she does too much, and gets really ill when taking a shower, as if a weighted blanket has been put on top of her.

rvallee · Jul 5, 2022

Are We Giving the Wrong Advice To People with Long COVID?
https://bylinetimes.com/2022/07/05/are-we-giving-the-wrong-advice-to-people-with-long-covid/

The first time she started to feel a little better Paula took their advice, and crashed almost instantly. “I pushed through it and I ended up in bed. For a week and a half, literally, without the energy to get out,” she said. She could barely muster the strength to go to the toilet.

In February, when Paula had an appointment at her local Long COVID clinic at Addenbrooke’s Hospital in Cambridge, she was ready for some guidance and support. Instead, she was told to exercise.

The idea that exercise is a useful treatment for people with chronic illnesses is not new. Chronic fatigue syndrome (ME/CFS), which like Long COVID is most prevalent in women, has historically been dismissed by medical professionals, often attributed to laziness or mental-health issues. A gradual increase in physical activity, known as graded exercise therapy (GET), was promoted as a cure, as was cognitive behavioural therapy.
...
GET is not mentioned in the Long COVID treatment guidance, which is limited, reflecting how new the condition is, but a spokesperson for NICE said that it “does not recommend either [cognitive behavioural therapy] or GET in the management of post-COVID-19 syndrome”, which is another name for Long COVID.

And yet they are almost universally used, even asserted to be effective. Despite no evidence. And in the case of ME, against evidence, showing beyond any doubt that evidence is entirely irrelevant in evidence-based medicine, it's popularity of evidence, regardless of its substance.

Art Vandelay · Jul 6, 2022

I suppose this is a positive story in that the medical practitioners involved have realised that pacing is key and that rehabilitation is not effective or safe. That being said, they still appear to be putting patients through useless exercises. Old habits die hard.

Coping with long COVID: Ottawa rehabilitation program offers tools, support and hope for patients

Those who have participated in the week-long, small-group, virtual program say it has been a game-changer. Not because it cures them, but because it gives them tools to cope and helps them understand that they are not alone.

“I had no grand expectations that this rehab was going to fix me,” 50-year-old Kerri-Lynn Herbert said. “For me, it was about confirming that I wasn’t alone.”
...
Tellingly, some of the program’s key lessons include acceptance and learning to pace themselves. With long COVID, pacing is everything.
Click to expand...

I know I'm preaching to the converted but these quotes also explain why trials of CBT and GET may lead to improvement on subjective outcome measures. The patient feels less alone and listened to. But, of course, they don't make any objective improvements.

SNT Gatchaman · Jul 6, 2022

Prof. Jack Lambert said:

"Patients have chronic fatigue syndrome (ME) as part of their long COVID. So many patients ... for decades have been told there's nothing wrong with them, and just to exercise more. ... There's this belief that the patients are making up their illness: if they just try harder and be mindful they'll get better. But the reality is most of the patients I took care of are healthcare workers, who've never missed a day in their life ... and here they are ... two years later they've done everything they possibly can, including private care ... and they're basically told 'there's nothing wrong with you, just exercise more' ... and that doesn't work for this condition. ... There's brain inflammation there: patients are not making this up."
Click to expand...

https://twitter.com/user/status/1544684818734239748

Sean · Jul 7, 2022

rvallee said: ↑

It would be the deepest irony if the stranglehold of this rotten ideology came to an end because too many medical professionals happened to experience its cruelty and ineptitude at the same time, happen to see what's on the other side of the looking glass.
Click to expand...

Whatever it takes. *shrugs*

Dolphin · Jul 7, 2022

SNT Gatchaman said: ↑

https://twitter.com/user/status/1544684818734239748

Click to expand...

One-third of long Covid sufferers have serious brain issues after one year
Infectious disease expert tells Oireachtas committee up to one-in-20 with condition unable to function or get out of bed
https://www.irishtimes.com/health/2...rers-have-serious-brain-issues-after-one-year

No mention of ME or CFS in this article

SNT Gatchaman · Jul 7, 2022

The Guardian: Who’s clapping now? UK healthcare workers with long Covid have been abandoned
Kelly Fearnley and Shaun Peter Qureshi

mango · Jul 7, 2022

News article, Sweden:

Barn med postcovid blir friska snabbare än vuxna
https://www.dn.se/sverige/barn-med-postcovid-blir-friska-snabbare-an-vuxna/

Auto-translate said:

Children with post covid recover faster than adults

Around 500 children in Sweden have been diagnosed with post covid, but how many are affected is uncertain. The symptoms can be confused with other conditions.

- What we in Stockholm call postcovid may be called chronic fatigue elsewhere," says paediatric infectious disease physician Olof Hertting.

A year and a half has passed since Olof Hertting and his colleagues at the postcovid clinic at Astrid Lindgren Children's Hospital admitted the first children with long-lasting symptoms after covid-19. So far, around 200 children have been assessed by the team's paediatrician, paediatric nurse, physiotherapist, occupational therapist, counsellor and psychologist. Only a few children had experienced such severe symptoms of covid-19 that they required hospital treatment.

Olof Hertting is now compiling his experiences of the children's symptoms in a study that is awaiting publication in a scientific journal. [...]

Statistics from the National Board of Health and Welfare show that about 30 000 Swedes have so far been diagnosed with postcovid, or post-infectious condition, after covid-19. Almost 500 of them are children and young people up to 17 years old. [...]

- We see a higher school absence in these children than in other diagnoses, and that can cause problems in the long term," says Olof Hertting. [...]

The children's symptoms make it difficult to make a diagnosis, he says. Mental illness is on the rise among young people, and the pandemic hasn't helped. [...] children may be diagnosed with exhaustion or depression because of their symptoms, even though they have post-covid.

- At the same time, other children may be diagnosed with postcovid when they actually have depression or another infection. This makes it difficult to know how many children have postcovid. [...]

One important lesson that Olof Hertting and his colleagues have learned over the past year is that children with postcovid do not get better from passive rest.

- Children need to be activated at the level they are currently capable of. For some, that means getting out of bed and eating dinner at the dining table; for others, a first step is to go outside the house where they live. Or going to football practice and just watching the others play.

Sometimes symptom-relieving medicines are needed, such as painkillers, anti-nausea medicines, antihistamines and beta-blockers to suppress a high heart rate. [...]

But Olof Hertting points out that young people are slowly getting better, and it seems to be happening faster than for adults with post-covid.

- It's about slow improvement, so it takes time. But it looks hopeful for the children, we see the vast majority feel better over time.
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Kalliope · Jul 7, 2022

It's worrying that they recommend "activating" children with Long Covid. Why so dismissive of convalescence?

Mij · Jul 7, 2022

https://twitter.com/user/status/1544890299196968961

Sean · Jul 8, 2022

One important lesson that Olof Hertting and his colleagues have learned over the past year is that children with postcovid do not get better from passive rest.
Click to expand...

Good thing that nobody is advocating that approach.

Amw66 · Jul 9, 2022

What a combination. Carson and Stone researching LC . What could go wrong ?

https://twitter.com/user/status/1545367120296517634

Dolphin · Jul 9, 2022

https://twitter.com/user/status/1545367866505060352

Click to expand...

Charles B. · Jul 9, 2022

Amw66 said: ↑

What a combination. Carson and Stone researching LC . What could go wrong ?

https://twitter.com/user/status/1545367120296517634

Click to expand...

For American friends on the forum who may be less inclined to feel that the Carson/Stone axis is relevant to Long Covid care in the US, I’ve noticed that Carson and FND are becoming incredibly popular amongst the Adam Gaffney cohort. Gaffney has intimated FND represents a plausible explanation for Long Covid and he wields considerable influence. Troubling stuff. Hopefully word can spread to potential participants to steer clear. Any ideas on how this could be better achieved?

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Long Covid in the media and social media 2022

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