Long Covid in the media and social media 2023

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“Before COVID there really wasn’t this diagnosis of brain fog,” Dr. Halpin said.

maybe not a 'diagnosis' (because it was almost uniquely associated with ME/CFS) but it doesn't take much searching to find its use as a key symptom.
 
Akiko Iwasaki interviewed on The Long Covid Sessions podcast (Feb 13). Interesting to hear that her initial interest in LC came via Ed Yong, and that then led to her ongoing collaboration with David Putrino, who had also been interviewed by Ed in April/May 2020.

She also discusses the importance of Twitter to her communication with patients and that she's stayed despite the recent management changes.

"I would be nowhere where I am now without that kind of direct patient engagement and learning from the patients." "I really - on a daily basis - am learning new things about what the patients are experiencing ..."
 
Martine used to work 60 hours a week. Long COVID changed everything

Martine van Boeijen used to grind out more than 60 hours a week at her Perth veterinary clinic while maintaining a strong running regime and a busy social life, but she now struggles to complete basic chores after long COVID turned her life upside down.

The 46-year-old, who first contracted COVID-19 in April last year, is one of about 500,000 Australians battling the aftershocks of COVID-19 and says more needs to be done to recognise and respond to its heavy burden.

Dr van Boeijen’s business, the Perth Cat Hospital, which was founded in 2016, struggled in her absence, losing about $400,000 in turnover. Growth at the clinic, which employs 21 people, has declined from 25 per cent in the first two years to about 15 per cent.

She returned to the clinic a month ago but can only manage about seven hours of admin work a week, which she completes on Mondays and Fridays. Long gone are her days of running 30 kilometres a week up and down the Swan River, and regularly socialising with friends.

“My life has been taken away from me,” Dr van Boeijen told The Australian Financial Review.

An interesting statistic (see figure also):

Dr Rachel David, the chief executive officer of Private Healthcare Australia, the industry peak body, said nearly $10 million had been paid out to members with long COVID and that it could put upward pressure on health insurance premiums.
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These figures relate just to private health insurance (which most Australians do not have).

I'd be very interested to see figures on income insurance payouts for Long Covid.
 
I made a short submission to the current Australian parliament committee into Long Covid. Mostly just noting the parallels with ME, and asking them to learn from that experience and not make the same mistakes. Plus more masking, and indoor air filters (because few things at this stage could deliver more short and long-term value for LC than those two, via increased prevention).

What did you do, Prof?
 
One could well ask when is Coyne's profession – psychology – going find a spine and put the rogue psychosomatic cult within it, that is quite clearly the root cause of all this unnecessary trouble for ME and LC patients, on a very short stout leash?

How come the pros can't manage to deliver on their end of the deal? We have more than delivered on ours.
 
The Conversation
We got some key things wrong about long COVID. Here are 5 things we've learned

quote:

In the past we had not devoted sufficient resources to treat post-infectious or immune syndromes such as myalgic encephalitis or chronic fatigue syndrome (ME/CFS). These syndromes are defined by excessive fatigue, which worsens after exertion, and include cognitive impairment or brain fog.

These symptoms are responsible for much of the disease and disability associated with long COVID in many people and are often more prevalent than respiratory problems.

Severe cases of long COVID, ME/CFS and other post-infectious syndromes may include a condition known as POTS (postural orthostatic tachycardia syndrome), where an excessive heart rate results in falls in blood pressure with even mild exertion.

Unlike survivors of COVID pneumonia, people with POTS are much less likely to benefit from traditional exercise-based rehabilitation programmes. Such programs may even exacerbate their symptoms.

Instead, approaches are proposed that have been previously applied to ME/CFS and POTS are proposed, including exercise pacing, and medication regimes. However, there is a lack of good evidence, and while trials are underway, they are few, especially in Australia.
 
The Conversation
We got some key things wrong about long COVID. Here are 5 things we've learned

quote:

In the past we had not devoted sufficient resources to treat post-infectious or immune syndromes such as myalgic encephalitis or chronic fatigue syndrome (ME/CFS). These syndromes are defined by excessive fatigue, which worsens after exertion, and include cognitive impairment or brain fog.

These symptoms are responsible for much of the disease and disability associated with long COVID in many people and are often more prevalent than respiratory problems.

Severe cases of long COVID, ME/CFS and other post-infectious syndromes may include a condition known as POTS (postural orthostatic tachycardia syndrome), where an excessive heart rate results in falls in blood pressure with even mild exertion.

Unlike survivors of COVID pneumonia, people with POTS are much less likely to benefit from traditional exercise-based rehabilitation programmes. Such programs may even exacerbate their symptoms.

Instead, approaches are proposed that have been previously applied to ME/CFS and POTS are proposed, including exercise pacing, and medication regimes. However, there is a lack of good evidence, and while trials are underway, they are few, especially in Australia.
Author is Peter Wark, Conjoint Professor, School of Medicine and Public Health, University of Newcastle, AU.
 
Only scanned a comment above but this looks OK to me-
"[James Coyne] Where are the citizen scientists of the #MEcfs #pwME community when someone needs to explain the horrors of an invalid #medically unexplained symptoms” diagnosis, and how it discourages exploration of the physical causes of complex illnesses?"

I've tried to engage with the log covid community [emails and one comment/response to a post on social media] and had one response. Others, on this forum, seem to have been more successful, especially via social media, - well done.
I've suggested this forum to those advocating for long covid.

There are lots of exemplars, like Jonathan and others who worked to improve the NICE guideline - well done, so I'm not so much asking where are the ME/CFS advocates as --- were are the long covid advocates?
 
were are the log covid community?
Where do you think they should be?

I would imagine that, just like the ME community, the vast majority are trying to deal with the devastating effects of their condition, while the few who are able to engage in advocacy are trying to do what they can with the limited amount of energy available to them. Neither communities owe anybody anything, despite what you might think.
 
One could well ask when is Coyne's profession – psychology – going find a spine and put the rogue psychosomatic cult within it, that is quite clearly the root cause of all this unnecessary trouble for ME and LC patients, on a very short stout leash?

How come the pros can't manage to deliver on their end of the deal? We have more than delivered on ours.
Frankly, looking at what has happened with LC, we punched way above our weight. We even did a lot of debunking ourselves, it's just that it turns out that evidence is irrelevant in evidence-based medicine, and that, clearly, some patients are way less equal than others.

We lead the horse to the water. We showed it the water. We mimed drinking some of the water. We took water and splashed it on its mouth, then pointed at the water.

We literally cannot do more than this to get a stubborn horse to drink. So I guess we're dealing with something more like a mule, but that may not be fair to mules as they aren't that stubborn.
 
There is a virtual event today on Long Covid, featuring a US Senator pwLC, Tim Kaine (who was Hillary Clinton's VP candidate), and the assistant secretary of the department of Health.
Starting soon! Solve M.E. and @IAmBiotech are kicking off a #LongCovid virtual event series today, featuring opening remarks from Senator @timkaine.
ADM Rachel Levine, MD @HHS_ASH discusses leveraging the patient experience to develop #LongCovid therapeutics and provide pathways to remission and recovery, and explains how these efforts will benefit people with #MECFS, #Dysautonomia, and other associated conditions.
 
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