News about Long Covid including its relationship to ME/CFS 2020 to 2021

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Almost makes you nostalgic for the old snake oil peddlers, they don't seem so bad in hindsight. Yeah, yeah, salt but still, come on have some damn common sense here about what it means to represent the medical profession and say stuff like that.

 
'These people aren't crazy': How long COVID could help sufferers of other little understood syndromes

From an Australian news source, focusing on Ross River virus and its long-term effects. Personal stories from two patients (one diagnosed with ME/CFS) and a virologist from Griffin University is also featured.

Mr Guy said he went to a GP who told him he had a normal virus.
He then got a second opinion at another GP who ordered a blood test, which confirmed it was Ross River.

Mr Guy would later learn there was a local outbreak of Ross River virus. He was the first of half a dozen people in his area to be diagnosed with the illness.
The effects of Ross River virus are varied. Many infected with the disease have no symptoms and may never even know they have it; others recover quickly.
However, experts estimate somewhere between 10-30 per cent of people with Ross River will go on to have chronic symptoms.

For Mr Guy, the effects have been debilitating.
"I wouldn't wish this on my worst enemy," he said.
"I am glad it was me who got this and it wasn't my wife or kids who got bitten by that stupid mosquito that day."​

Full article: https://www.9news.com.au/national/r...yndromes/ff3bc951-4fce-4448-82b5-9ed605a81bf9
 
Just wanted to pass here that the Pulminary Wellness Foundation's documentary film, “Long Haul” started yesterday and will run from October 11-24, 2021 as part of the Urban Mediamakers Film Festival.

If interested: you can screen the complete film at https://www.urbanflixtogo.com as part of a 30-day free trial or you may purchase tickets to the festival at https://filmfreeway.com/UMFF/tickets.

Trailer can be viewed here: .

The documentary is about 38 minutes in length.

Plot: "It was initially believed that Covid-19 was "a respiratory virus," that "lasts for 10-14 days. Long Haul is the untold story of hundreds of thousands of people still suffering from Covid's devastating impact months and for many, more than a year after getting over their acute illness; as told by the only people who can truly understand its impact...Long Haulers"
 
newsGP WHO officially recognises long COVID

quote:
Dr Anna Brooks, a cellular immunologist and senior research fellow at the Maurice Wilkins Centre at the University of Auckland, said she hopes the clinical case definition will see more patients receive the care they need.

She said it has been ‘incredibly distressing’ to hear of people in New Zealand who fit the WHO’s criteria previously being dismissed by doctors.

‘This, in part, may also be due to the similarities that long COVID has with myalgic encephalomyelitis/chronic fatigue syndrome [ME/CFS], another poorly-understood and often dismissed condition that can occur following viral infection,’ she said.

‘We hope that the international attention on long COVID, including the announcement of a clinical case definition, will result in all post-viral conditions being taken seriously so that medical care and treatments can be developed once research is undertaken to address this global health burden.’
 
Vaccine rollout strategies: The case for vaccinating essential workers early
COVID causes long-lasting symptoms that can be debilitating [14]. There is a syndrome that has come to be known as Long COVID [15]: extreme fatigue and other COVID symptoms that may last for weeks or months [16], and may turn out to be chronic to the best of our knowledge now [14]. The symptoms are similar to those described by survivors of SARS [17], and fit the clinical definition of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) [18].
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https://journals.plos.org/globalpublichealth/article?id=10.1371/journal.pgph.0000020
 


"The challenge is there are no evidence-based treatments for long-COVID or late COVID POTS (Postural Orthostatic Tachycardia Syndrome) because it's so new. There hasn't been time to do studies. But at the same time, from a patient point of view, it's not reasonable to say 'sit tight' or 'we'll get back to you in 10 years' because the patients are suffering right now". :emoji_thinking:

Some posts about POTS have been moved here
 
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Mij said:
"The challenge is there are no evidence-based treatments for long-COVID or late COVID POTS (Postural Orthostatic Tachycardia Syndrome) because it's so new. There hasn't been time to do studies. But at the same time, from a patient point of view, it's not
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"This is so new", names something that's been known literally for decades. WTF is wrong with this entire profession's inability to learn from experience? If it's not in a textbook taught by a teacher and graded with an answer sheet it's like the process of learning is impaired to the point of being stagnant.

POTS? Yeah doesn't exist. Late COVID POTS? Yeah totally new. I mean it didn't exist before so I guess there's a technical truth to this, this is indeed "new" to most of them. But admitting that something that is literally decades-old is "new" to an expert is an embarrassing admission that should lead to some self-reflection and yet, nope, literally the opposite of that.

No wonder progress takes at least a full generation to take place. It's the entire design of the system that makes it happen this way.
 
Wonko said:
'not reasonable' you say?
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It's very easy to do, though, so that overrules the "not reasonable" part, I guess. And, in truth, it really is very easy to simply not care and pretend it doesn't exist, there is no mechanism to account for that. There are decades of experience behind that indifference.

But the fact that it really is that easy for the medical profession to simply neglect millions is the fundamental problem. It should not be easy to sacrifice millions of lives to an insane ideology. And yet here we are, it's so easy that it continues to happen without any hindrance. They can even express shock at "learning" stuff from decades ago, stuff they've heard of, and dismissed as quackery, but that's too embarrassing to admit, so the failure must go on.
 
Mij said:
"The challenge is there are no evidence-based treatments for long-COVID or late COVID POTS (Postural Orthostatic Tachycardia Syndrome) because it's so new. There hasn't been time to do studies.
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Quite frankly, this is getting very offensive. Post-viral illness has been well-documented for over 100 years.

Maybe the victims of a pandemic in the year 2120 will finally get some decent treatment.
 
Evidence that evidence hardly even matters, because the evidence is there and yet almost no one is reacting to it, they only see what they want to see. What matters is what people do with it. When they do nothing, well, nothing happens, might as well be as if the evidence did not exist. And yet it still does, but people do nothing anyway, people whose job it is to do something, technically legally "obligated" to, are opting to do nothing. Which is odd, but it is what it is.

I see a lot of "well, the definitions are still not clear and we can't even tell sub-sets apart", as if someone there is an implicit assumption that someone, somewhere, will do the work. But it's not happening, we're still at the "POTS is totally new, guys, I never took it seriously so that must mean it's brand new, somehow" stage, aka day -10,000. And highly disabling issues like brain fog still don't even have a formal name, because no one is responsible for doing anything, everyone is still waiting for someone else to do something, so the whole system is in gridlock because no one wants to move and everyone is waiting for others to move before doing anything.

Anything but somehow attributing a tiny % of what is essentially a comfortably >50% recovery rate to vague BS like "rehabilitation". I shudder to think of what would inevitably have happened if this has been just small enough to bury.

 
Great article in Bloomberg Law:
Long Covid Doubles Burden of Mystery Illness Few Doctors Treat

Quotes:
“There’s still a lot of health-care providers that don’t understand ME/CFS and patients face a lot of stigma because the illness is very much biologic, very much real, but most of the routine lab tests are normal,” said Elizabeth Unger, chief of the Chronic Viral Diseases Branch at the Centers for Disease Control and Prevention (CDC).

...
Doctors say a silver lining of Covid-19 is that it’s bringing more awareness to ME/CFS and forcing physicians to recognize the condition.

“It’s thrusting the awareness of post-viral syndrome and these debilitating multi-system illnesses right into the forefront of medicine,” said Lucinda Bateman, medical director of Bateman Horne Center.”We’re going to have to accept it.”
 
rvallee said:
Evidence that evidence hardly even matters, because the evidence is there and yet almost no one is reacting to it, they only see what they want to see. What matters is what people do with it. When they do nothing, well, nothing happens, might as well be as if the evidence did not exist. And yet it still does, but people do nothing anyway, people whose job it is to do something, technically legally "obligated" to, are opting to do nothing. Which is odd, but it is what it is.

I see a lot of "well, the definitions are still not clear and we can't even tell sub-sets apart", as if someone there is an implicit assumption that someone, somewhere, will do the work. But it's not happening, we're still at the "POTS is totally new, guys, I never took it seriously so that must mean it's brand new, somehow" stage, aka day -10,000. And highly disabling issues like brain fog still don't even have a formal name, because no one is responsible for doing anything, everyone is still waiting for someone else to do something, so the whole system is in gridlock because no one wants to move and everyone is waiting for others to move before doing anything.

Anything but somehow attributing a tiny % of what is essentially a comfortably >50% recovery rate to vague BS like "rehabilitation". I shudder to think of what would inevitably have happened if this has been just small enough to bury.

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Article from Medscape about the study
Half of COVID Survivors Report Effects Beyond 6 Months: Review

quote:
Putrino said his team primarily sees patients who have "invisible" but debilitating symptoms after COVID-19 despite the fact that the results of testing of organs are normal.

"We've been working with this population of about 1600 patients in New York to rehabilitate them over time," he said.

Patients often report extreme fatigue or postexertional symptom exacerbation, meaning that if they cognitively, emotionally, or physically exert themselves, they experience symptoms for many days after the event. Other commonly reported symptoms include chest pain, brain fog, suddenly feeling hot, then cold, or discomfort after eating.
 
There's some decent mentions of ME/CFS in this Australian article on Long Covid:

This is what long covid feels like

Australia is preparing to “live with the virus” but Freya, Judy and Adam already know what that feels like. COVID-19 left them with long-term health issues and nowhere to turn for answers.
...

Fatigue or post-exertional malaise is one of the most common symptoms of long COVID, but it’s also a very common symptom in myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), a biological disease affecting an estimated 250,000 Australians.

There are striking similarities between long COVID and ME/CFS.

Both can cause symptoms such as fatigue, dizziness, memory loss or ‘brain fog’, and irritable bowel, and both are likely to encompass a range of different pathologies.

ME/CFS is usually triggered by a viral infection — ebola, dengue fever, glandular fever, epstein barr, ross river virus, SARS and even the more common influenza have all left trails of chronically ill people in their wake.

Experts have even questioned whether long COVID could be ME/CFS by another name, although the jury is still out on that theory.
...

Bronwyn Caldwell knows what it’s like to live with a condition that no-one understands or knows how to treat. She’s lived with ME/CFS for 20 years, ever since a suspected case of glandular fever in her 20s.

The 46-year-old from South Australia is adamant the early advice from her doctor to rest was the reason her condition didn’t immediately worsen. She was able to work part-time as a brewer up until 2013 but a relapse has left her mostly bed-bound.

Bronwyn considers herself lucky — her illness was validated by doctors and family, she doesn’t have cognitive difficulties and isn’t in pain.

But her voice begins to break when mentioning that most people with ME/CFS face stigma that they’re being lazy or faking their illness.

“I can’t imagine what it’s really like to have everyone in your life say you’re just being lazy, because the reality is all of us beat ourselves up to that all the time,” she says.
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Please be warned that this article contains a lot of animations that may be very difficult for many of us to cope with. I had to use the "reader view" button in Firefox to strip away all the extraneous puffery. Other browsers have similar features.
 
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We heard the same from multiple sources. Even with POTS somehow getting minimal recognition, no one seems to understand that just because they were ignorant or dismissive of it doesn't mean there aren't already people working on it. Nope, it just has to be "brand new" because otherwise it's embarrassing to admit and medical egos are more important than patients' lives.

It's becoming all too clear to me that medical research is inefficient, expensive and lengthy largely because of institutional incompetence and a dysfunctional culture that is maximally wasteful, leveraging nothing. There's nothing inevitable about it, it's just the way the system is designed, well, more like kludged together but whatever. It never benefitted from an overhaul with time, is still stuck holding on to myths and beliefs dating back 2 centuries ago.

"Should we ask the people who already know about this?", no one is actually asking. Not even people who literally predicted it from the start. That's just not how the system is designed, it's the longest possibly tortuous route possible or bust.

 
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