Long Covid in the media and social media 2022

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As expected, Long covid patients in Australia are about to face the same abuse and gaslighting those of us with ME/CFS have experienced:

‘Crushing exhaustion’: Long COVID takes toll on young patients

After running a broad spectrum of tests – which all came back clear – her GP referred her to Dr Morgan Hee, one of the rehabilitation medicine physicians who will treat her at the St Vincent’s Hospital clinic.

She will participate in a rehabilitation program, including a graded exercise program to build up endurance and strength and psychological treatments for fatigue.
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And a timely warning for those with Long Covid:

‘Don’t have this treatment for long Covid’
Alice Rumble ended up hospitalised after having this treatment. Now she’s warning against anyone in Australia having it for long Covid.

In 2015, I heard about a fatigue clinic in my city attached to a prestigious Australian university. The clinic was designed to help people with unexplained fatigue, including ME. I felt lucky to be accepted into the program. I believed they offered a cutting edge treatment. There was hope.

The program mandated that I would alternate sessions between a psychologist and an exercise physiologist. The paperwork made clear that I was lucky to be in the program and that it was my responsibility to do the “work”.

It stated this was a multidisciplinary clinic offering graded exercise therapy (GET) and cognitive-behavioural therapy (CBT), which had a “strong scientific evidence base”.
...
After completing the program, the clinic sent me a survey about my progress. I replied honestly and referred to recent research developments indicating that GET was dangerous for people with ME. I never heard from the clinic again.

GET made my illness much worse. These therapies were prescribed by a team of doctors, exercise physiologists and psychologists. They are still recommended in Australia for people with ME.
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As far as I know, there's only one "fatigue clinic" in Australia attached to a university (and we know who runs that one).
 
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Poor Maia: I didn't realise she'd been out so long (and it makes me feel old, remembering her as a promising junior). There are other tennis players I'm aware of out there who are in a similar situation - and at least one ballet dancer I know of, too. Horrible for all of them.
 
Long Covid Podcast interviews doctor and researcher Ziyad Al-Aly, based in St Loius, USA about Long Covid. Not much news, but emphasis on the seriousness of the disease and how many people that are affected. He also says the work from patient advocates has been crucial for the field.

Towards the end ME and other post viral illness are mentioned, and dr. Al-Aly says the Long Covid research is a silver lining as it will bring more help to ME sufferers. He also says that post viral illnesses have been known for over a hundred years but swept under the carpet. However, if it had been researched earlier, we would have been better prepared now to meet the challenges with Long Covid. Hopefully we'll not drop the ball again. People chose to ignore it, so now we have to start from scratch.

https://www.buzzsprout.com/1835170/10209583

He's on twitter and seems to be tweeting quite a lot on Long Covid, if anyone wants to follow him
https://twitter.com/zalaly
 
(They mean people who end up more disabled as a result of exercise rehabilitation program, translation isn't great)
The reports of long-COVID-affected people who end up in need of care through rehab are piling up every day. Nevertheless, the concept will continue to be adhered to, according to the motto "a lot helps a lot".
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Also interesting for the legal eagles on the forum, and in general: long haulers stating they will pre-empt any attempt at forcing them into rehabilitation programs that they will hold service providers responsible if they deteriorate as a result:
If I am offered rehabilitation, I will have a "legally secure" letter drawn up, which I have to sign and that the procedure there will be in accordance with the latest guidelines, which no longer contain the known harmful therapies. Otherwise compensation
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Of course the service would simply discharge a patient doing that. I don't think anyone expects there to be any actual accountability for those services, they are fully assumed to be risk-free.
 
Today in the journal of the Swedish Medical Association:

Ny rapport om postcovidvården: Många upplever sig misstrodda
https://lakartidningen.se/aktuellt/...ostcovidvarden-manga-upplever-sig-misstrodda/
Auto-translate said:
New report on postcovid care: many feel distrusted

People who have had long-term symptoms after covid-19 for more than six months are more likely than others to feel they have not received the care they need, according to a report by Healthcare Analysis. About two out of three respondents also feel distrusted by the health care system.
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Failure to consider long Covid impact will hit UK economy, says expert (Guardian, 31/3/22).

Speaking at a Royal Society conference on the science of Covid on Thursday, Dr Nathalie MacDermott, a specialist in paediatric infectious disease at King’s College London, said high levels of infection would result in more long Covid that would blight people’s lives, harm children’s education and undermine the economy.
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The Office for National Statistics (ONS) estimates that 1.5 million people in UK households are living with long Covid, where symptoms from fatigue and brain fog to loss of smell and taste persist for more than four weeks after infection. Nearly half of those surveyed by the ONS reported ailments lasting at least a year.
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Article also includes comments from Clare Gerada and Chris Whitty:

Speaking at a separate conference held by the Royal Society of Medicine, Clare Gerada, the president of the Royal College of GPs, said doctors also needed to be mindful of not over-attributing illnesses to long Covid. “There is a real risk of attributing the chronic cough to long Covid when it’s actually lung cancer,” she said. “As a doctor sitting there [we have to] think long Covid, but then we [should] think: ‘What else could it be?’”
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Speaking at the RSM conference, Prof Chris Whitty said the pandemic was “not over yet” and that Covid would “keep throwing surprises at us over the next few years”.
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Speaking at a separate conference held by the Royal Society of Medicine, Clare Gerada, the president of the Royal College of GPs, said doctors also needed to be mindful of not over-attributing illnesses to long Covid. “There is a real risk of attributing the chronic cough to long Covid when it’s actually lung cancer,” she said. “As a doctor sitting there [we have to] think long Covid, but then we [should] think: ‘What else could it be?’”
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mumble mumble :grumpy:

:speechless:
 
Paywalled long read article in Swedish newspaper DN.

Anna Voltaire fick postcovid: ”Jag blev 90 år över en natt”
https://www.dn.se/vetenskap/anna-voltaire-fick-postcovid-jag-blev-90-ar-over-en-natt/

ME is not mentioned in the main body of the article. However, at the very end there's this:
Auto-translate said:
Facts. Myalgic encephalomyelitis, ME

When Jonas Bergquist, a professor of analytical chemistry and neurochemistry at the Biomedical Centre at Uppsala University, heard the first patients with post-covid tell of their fatigue, brain fog and pain, his interest was piqued. These are symptoms described by another group of patients: the 10 000 Swedes, mostly women, who have the disease myalgic encephalomyelitis, ME (formerly called chronic fatigue syndrome).

- Both conditions are triggered by a viral infection. In ME patients, it's often the flu or glandular fever," he says.

However, he doesn't think they are the same disease.

- But there may be similar mechanisms behind them, and that's what we're looking at now in our research, says Jonas Bergquist.
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SNT Gatchaman said:
Failure to consider long Covid impact will hit UK economy, says expert (Guardian, 31/3/22).
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The following has been passed on by a member with details of the event referred to in the quotes:

The Science of COVID | Royal Society (30-31 March 2022)

https://royalsociety.org/science-events-and-lectures/2022/03/tof-covid/
The Science of COVID | Royal Society (30-31 March)

https://royalsociety.org/science-events-and-lectures/2022/03/tof-covid/

1 talk on 'Long Covid':

Long Covid: A long lasting legacy of the pandemic?
Dr Nathalie MacDermott, King’s College London

(Clinical lecturer in paediatrics, paediatric infectious diseases and Immunology and bone marrow transplant )

Program PDF here:

https://royalsociety.org/-/media/ev...a=en-GB&hash=D7590FE9FD1F76B4ABA69C27C1E1CC59

From biography / Abstract:

Dr Nathalie MacDermott, King’s College London

Biography: Dr MacDermott is an academic clinical lecturer at King’s College London funded by the NIHR. She works clinically as a paediatric infectious diseases doctor, but her research background is in epidemic and pandemic diseases. Her PhD, awarded by Imperial College London, investigated genetic susceptibility to outcome from Ebola virus disease in Sierra Leone [....] including post-Ebola conditions in Ebola survivors.

She is currently investigating post COVID-19 problems (‘Long Covid’) in children utilising multidisciplinary clinical assessment, magnetic resonance imaging, immune phenotyping and, in the longer term, genetic analysis to understand the different phenotypes and pathogeneses of the varied presentations of this condition. Dr MacDermott also suffers from a Post COVID condition following becoming infected while working on the front line.


Abstract:
Long Covid: A long lasting legacy of the pandemic?

Long COVID covers a multitude of persistent symptoms and conditions which follow on from acute COVID-19, whether severe or mild. The most recent report from the Office for National Statistics (ONS) estimates that 1.5 million people (2.4% of the UK population) were experiencing self-reported long COVID as of 31st January 20221, of which 45% had symptoms for longer than a year. The middle-aged adult population is most affected, particularly females.

Reports from employers suggest a quarter put long COVID in the top three reasons for long term sickness absence. Similarly, there has been a 20% increase in applications for Personal Independence Payments in the last year. Long COVID affects approximately 2% of children and young people following acute COVID19, impactingtheir education, future earning potential and resulting in parental work absence. The economic impact of long-term sickness among the UK working population due to long COVID remains unclear but is likely substantial.

Why has long COVID not been considered when deciding public health measures to mitigate spread of SARS-COV2? The long-term morbidity and disability of the UK population must be given due consideration, it will be a long-lasting legacy of the pandemic.

But there's also:

Lessons learned from the Pandemic for science communications in an
emergency
Fiona Fox OBE, Science Media Centre

(abstract see progam link above)
 
Montreal Gazette The link between long COVID and a medical mystery

quotes:

Once known as chronic fatigue syndrome, myalgic encephalomyelitis (ME/CFS) has long been poorly understood, overlooked and often stigmatized.

Now, early research suggests, up to half of all COVID long-haulers could meet the criteria for an ME/CFS diagnosis. And as experts probe the link between the two illnesses — and COVID-19 cases continue to accumulate — ME/CFS patients new and old are urging people to recognize how debilitating and life-altering it can be.

...

As early as the fall of 2020, the AQEM tried to raise the alarm about a possible link between long COVID and ME/CFS. In interviews, they warned people about the risks and pushed the government to prepare for the influx of ME/CFS patients they saw coming.

But they feel their calls went ignored, compounding years of frustrations.

For decades, Prud’homme said, people with ME/CFS in Quebec have felt neglected by the system, with little access to services or compassionate care, in large part due to health professionals not understanding the illness.

...


Even in the most conservative of estimates, he believes the pandemic will lead to the number of people with ME/CFS in Quebec — estimated to be more than 70,000 at the moment — nearly doubling in size.

“We weren’t equipped before the pandemic to take care of people with ME/CFS,” Moreau said. “So imagine now.”

Simon Décary, a researcher at the Université de Sherbrooke, expressed similar concerns. He describes long COVID as an umbrella diagnosis with clusters of different diagnoses that fall under it, including ME/CFS.

“We know there is a link, because we have the evidence of the overlap of the clinical symptoms,” Décary said. “But is it exactly the same biological process? That we don’t know yet.”
 
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