Long Covid in the media and social media 2022

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Emerson Wheeler: We are failing the many people struggling with long Covid

Whatever you want to call it — a limbo, a purgatory, a void — the waiting periods between symptom onset, diagnosis and treatment are excruciating. They are times filled with anxiety, fear, shame, guilt, self-blame, and eventually anger and grief.

They often also involve months of waiting for appointments and then lots of smiling, encouraging providers reassuring you that your results "look normal" without any acknowledgement that “normal” results can be devastating for someone who feels anything but.
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This is a biological disease and we actually know a whole lot of the science behind it. We also know that there are many comorbid disorders that occur with it, many of which have options for symptom management. Some of these disorders include but are not limited to: postural orthostatic tachycardia syndrome, myalgic encephalomyelitis/chronic fatigue syndrome, autonomic dysfunction, autoimmune diseases, and much more.
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https://vtdigger.org/2022/11/21/eme...g-the-many-people-struggling-with-long-covid/
 
Highly validating and resonates with my own early illness experience. Both of our experiences completely contradict the biopsychosocial model.
The BPS model:
Focusing on symptoms also contributes to impairment and fatigue, and a low perceived sense of control over symptoms also induces fatigue.
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An actual patient's words:
I had ignored my symptoms until I couldn't deny them any longer. I was losing function in my legs, fainting outside patients’ rooms, and experiencing migraines and concentration and memory problems. I spent my little free time desperately searching for answers.
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Long Covid: Urgent research needed into effects of illness on children
There is still too little known about long Covid and particularly how it affects children.

But this programme can reveal that half the patients at a new clinic for those with the severest form of the illness had already been diagnosed as being on the autistic spectrum, a surprise finding that has led to calls for more – and urgent research.

And even for those not on the spectrum, help is often hard to find – we spoke to one young patient whose recovery has taken more than 10 months.
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6minute segment
https://www.channel4.com/news/long-covid-urgent-research-needed-into-effects-of-illness-on-children

 
Young Scots teacher left unable to read books after crippling long covid battle
After 12-weeks of suffering with crippling symptoms, Mel attended her GP surgery but with information on long covid vague at the time, her symptoms were put down to fatigue. A lung health check revealed damage from the disease one month later and Mel returned to her doctor as her symptoms showed no signs of improvement.

She was officially diagnosed with long covid and Myalgic encephalomyelitis, also called chronic fatigue syndrome. With research into long covid still ongoing, Mel doesn't know if she will ever recover and is currently on nerve pain medication for a wide range of symptoms.
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https://www.dailyrecord.co.uk/news/scottish-news/scots-teacher-left-unable-read-28545918

I wonder how many LC patients are being diagnosed with ME...... but I think the gov recently said (qs in parliament thread) that they have no intention of collecting this data(?)

has any organisation (in the UK ) tried to set up some kind of online registry?
 
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Half a million Australians could soon be experiencing long COVID. So what do we know, and what support is available?

https://www.abc.net.au/news/2022-11-23/long-covid-cases-mount-amid-omicron-wave/101650436

University of Queensland's Paul Griffin, an infectious diseases physician, said the main challenge posed by long COVID was there was "too many unknowns" relating to prevention, diagnosis and treatment.

"The answer to nearly every question at the moment is still 'I don't know'," he said.

"Like the rest of our response to the pandemic, we need to try and gather more information, collect some really good data and address some of those unknowns so that we can improve the outcomes.

"I guess the one thing we do know is it's very significant and it's only going to increase."
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A good article overall, though Mr Griffin may be a little optimistic about the numbers who recover.

"We think that the majority of people will make a full recovery in time," Dr Griffin said.​

Maybe. I hope so. But we will see.
 
Mentions Long Covid

The puzzle of UK’s half a million missing workers

For the first time, more than 2.5 million people in the UK are out of work because of a long-term health problem. The number has jumped by half a million since the start of the pandemic - but, BBC News analysis reveals, the impact is spread unevenly across the country, with some regions and types of job far more affected.

Something strange seems to be affecting the UK workforce.
The country is in its fourth year of sharply rising chronic illness.
The highest rates are among 50- to 64-year-olds - but there have also been significant increases in some younger groups.
Although the link is not conclusive, the Bank of England has said record NHS waiting lists are likely to be playing a "significant role".

But the largest increase in long-term sickness is in the catch-all "other health problems" category, likely to include some of those with "long Covid" symptoms.

https://www.bbc.co.uk/news/health-63625989


 
Dianna Cowern on Twitter said:
With symptoms this bad, what I think some doctors don’t get is that being told to “just rest,” this much, and for this long, is as good as asking me to just… not live.
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Decades and millions wasted on a psychosocial model have not come up with anything as relevant as this small nugget from someone who is new at this. Regardless of anything, all of their work combined has never managed to grasp the reality of chronic illness anywhere near close to this errant thought.

Medicine's blanket dismissal of the lived experience of patients is one of the worst mistakes in the history of our species. It has stagnated the very profession we depend on to be healthy.
 
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Eleonore Léone lider av postcovid: ”Tungt att lyfta ett finger”
https://www.svt.se/nyheter/inrikes/eleonore-leone-lider-av-post-covid-tungt-att-lyfta-ett-finger
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Eleonore Léone suffers from post-covid: "It's hard to lift a finger"

(Video, 2 minutes)

- It's a fatigue unlike any other. It's heavy to lift a finger.

Influencer and artist Eleonore Léone now spends her days on the couch, exhausted, feverish with heart palpitations. It's been that way since May 2021.

Eleonore Léone suffers from long-term symptoms following a covid infection. She is far from alone. In her home region of Östergötland alone, 2,147 people have been admitted to primary care in the past 18 months with a diagnosis of postcovid. However, the curve is slowly declining.

How many of those who has had covid is suffering from long-term symptoms is difficult to answer because the diagnosis is still quite new.

Mirjam Schimanke, a doctor at the covid clinic in Norrköping, refers to a large Dutch study that indicates that almost 13% of covid-19 sufferers have long-term symptoms.

Doctor: "Brain fatigue" most troublesome

To have symptoms as severe and long-lasting as Eleonore Léone's is unusual. But for many, it takes a long time to fully recover.

- It's the "brain fatigue" that's most difficult," says doctor Mirjam Schimanke. It's the one that makes it most difficult to return to a functioning everyday life. Difficulty concentrating, memory problems, stress sensitivity and crippling fatigue.

Can take time to recover

The care offered by the Norrköping clinic is very much about coordinating the efforts of different specialists: neurologists, cardiologists and so on. As well as finding ways back to work with the help of occupational therapists. Patients need to be patient - for many it can take time to fully recover.
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Professorn om post-covidsjuka: De är inte inbillningssjuka
https://www.svt.se/nyheter/inrikes/professorn-om-post-covidsjuka-de-ar-inte-inbillningssjuka
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Professor on people with post-covid: They are not hypochondriacs

Extreme fatigue, endless fever and heart palpitations. More than 50,000 people may have suffered from post-covid in Sweden in the aftermath of the pandemic. The road to recovery may be long - but scientists are at least beginning to understand what's really going on in the body of those who have the disease.

- We need to find a cure. I'm very hopeful that we can do that, but it's taking a frustratingly long time," says immunology professor Petter Brodin.

Since 2020, 9,225 people have been diagnosed with post-covid among hospital inpatients. But the vast majority of people with postcovid do not end up in hospital, but in primary care. Since the regions measure in different ways, it is difficult to know exactly how many people are affected, but based on regional statistics from the Örebro region, there could be almost 50 000 people affected in Sweden.

According to Petter Brodin, a paediatrician and professor of immunology at Karolinska Institutet, the figure is many, many more.

For post-covid patients, the symptoms are many and diffuse, and the road to diagnosis is often long. Brodin believes that it is precisely the broad range of symptoms that makes it difficult to map the prevalence of post-covid.

The body's physiological systems go haywire

One of the most common symptoms experienced by many patients is brain fatigue. Many report a numbing fatigue - which some interpret as imaginary.

- That's because it's an undefined diagnosis. From very mild symptoms to very severe ones, says Petter Brodin.

When can you tell that someone has postcovid?

- What we know from all our studies, especially of the more severe cases, is that this is not imaginary illness. It's very clearly caused by different physiological systems that are derailed and don't work properly after this infection,' he tells SVT Aktuellt.

Watch the professor of immunology explain what's going on in the body during postcovid in the video above.
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More here, on the news/Aktuellt (video, 13 minutes, in Swedish):
https://www.svtplay.se/video/86Y2RW...6Y2RW7&position=1384&highlight=postcovid-1384

It surprises and disappoints me that prof Petter Brodin, who has previously been involved in ME research, says in the interview that he's feeling very hopeful that they are going to be able to cure these conditions in 1-2 years (he used the expression "nåt år" in Swedish). Unrealistic expectations are not helpful.

He also talked about what they believe is the cause of post-covid: the fact that the body always has to make adjustments when it gets an infection. How hard should the immune system try to get rid of the infection? Trying too hard can be harmful too. The hormones, heart and nerves sometimes stop regulating themselves normally, and they believe that's the cause of post-covid.

He talked about other kinds of post infectious conditions, but did not mention ME.

Talking about effective treatments and a cure, he says that they believe viruses remaining in the body is one factor and they are working on treatments to remove them.
 
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mango said:
It surprises and disappoints me that prof Petter Brodin, who has previously been involved in ME research, says in the interview that he's feeling very hopeful that they are going to be able to cure these conditions in 1-2 years (he used the expression "nåt år" in Swedish). Unrealistic expectations are not helpful.
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It's been over 2.5 years and no progress was made at all, medicine still hasn't even caught up to the 90's on this issue. The blatant refusal to even try is evident.

Very bad idea to make such promises when the real work hasn't even started yet at the scale it's needed. No more hopium, damnit.
 
Washington Post: Desperate covid long-haulers turn to costly, unproven treatments

Regular link (paywall)


Gift link (no paywall for 2 weeks)

Washington Post said:
For the burgeoning population of covid long-haulers, there is an abundance of new treatment options: Specially formulated nutraceuticals imported from India that promise to “get you life back from covid.” Pure oxygen delivered in a pressurized chamber. And, if time and money are no obstacle, a process known as “blood washing” that’s available in Cyprus, or $25,000 stem cell treatments in the Cayman Islands.

Months-long waits at long-covid clinics combined with the sluggish pace of research have left vulnerable patients clamoring for immediate care as manufacturers bring novel remedies to market, often with little data behind them.

“I have tried, I would say, as many different things as anyone could do in my situation,” said Donna Davis-Doneghy, a 62-year-old accountant with Hearthside Food Solutions in London, Ky., who has been tormented by headaches since coming down with covid in November 2020.
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