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

When it comes to breakthrough cases, are we ignoring long Covid once again?

"On 1 May, the US Centers for Disease Control and Prevention stopped tracking breakthrough infections that did not lead to hospitalization or death. Its rationale was to “maximize the quality of the data collected on cases of greatest clinical and public health importance”, making the continued assumption that non-hospitalized Covid cases are not important but “mild”: without complications, manageable at home, where patients fully recover in two weeks.

I have dealt with persistent symptoms for 17 months – an illness now called “long Covid” – and not collecting data based on this assumption is an enormous mistake, one that has persisted throughout the pandemic and has severe consequences moving forward."

https://www.theguardian.com/comment...h-cases-are-we-ignoring-long-covid-once-again

 

WHO initiative.

Post-COVID Condition Core Outcomes
An international initiative to establish critically important core outcomes in Post-COVID Condition

https://www.pc-cos.org/

The Coronavirus disease 2019 (COVID-19) pandemic has necessitated rapid responses from healthcare systems and research networks all over the world. The post-COVID-19 condition, also known as Long-COVID-19 is becoming an important target for research and clinical practice. With an increasing number of studies assessing sequelae of COVID-19, there is a need for a standardised evaluation and reporting of outcomes.

PC-COS project is an international consensus study to develop a standardised set of outcomes – a ‘core outcome set’ (COS) – to be used by all future trials examining outcomes and clinical practice in people with the post-COVID condition.

The project is designed by a group of international experts and members of the public, including people with lived experience of the post-COVID condition, and is supported by WHO.​

 

Not sure if it's been posted but the NIH has a library of Covid-specific research, LitCovid, that allows to filter for Long Covid: https://www.ncbi.nlm.nih.gov/research/coronavirus/docsum?text=e_condition:LongCovid.

 

https://twitter.com/user/status/1423384660214788107

 

I think this is the explanation for the above Evaluating Covid-19 Injury Claims With a Focus on Workers’ C... : Journal of Occupational and Environmental Medicine (lww.com)
Write your reply.

 

https://www.nejm.org/doi/full/10.1056/NEJMp2109285

"Confronting Our Next National Health Disaster — Long-Haul Covid"

This is an exceedingly well-done feature by New England Journal of Medicine, which is among the most prestigious peer-reviewed medical journals around.

“The health care community, the media, and most people with long Covid have treated this syndrome as an unexpected new phenomenon. But given the long arc and enigmatic history of “new” postinfection syndromes, the emergence of long Covid should not be surprising.”

“Equally unsurprising has been the medical community’s ambivalence about recognizing long Covid as a legitimate disease or syndrome”

“To understand why long Covid represents a looming catastrophe, we need look no further than the historical antecedents: similar postinfection syndromes. Experience with conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)”

"There are valuable lessons to apply from extensive prior experience with postinfection syndromes. The relationship of long Covid to ME/CFS has been brought into focus by the CDC, the NIH, the WHO, and Anthony Fauci....."

"If the past is any guide, they will be disbelieved, marginalized, and shunned by many members of the medical community. Such a response will leave patients feeling misunderstood, aggrieved, and dissatisfied…”

 

Ah, yes, the historical antecedent of... right now. It's an otherwise good article but... seriously? It's ongoing and worse than ever, nothing historical about that, unless one is making the classic Mitch Hedberg joke. It used to happen, but it's also still happening, with no end in sight.

Because we don't have to use the past as a guide, certainly not to predict that "they will be" gaslighted. It's been happening from the start and is getting worse as time goes by without any progress made. Might as well talk about climate change as something that was a problem years ago. It sure was, but it still is, now more than ever and in the near future.

Although there's nothing surprising about medicine's faceplant here. We literally predicted it. You know, the people who this used to happen (and is still happening to). Orwell was wrong, you don't even need to make an effort to erase the past, people can completely ignore the present, even scientists, discussing a current event, in a peer-reviewed journal.

Dunning-Kruger isn't about being smart, or too dumb to know, it's about the limits of what people can see, usually only what's in front of them, and usually only what they are willing to see. Even physicians, even scientists. It's almost as if we need to make this a formal process removed from human judgment and relying on objective measures, or something like that. I'd call that the sciencey method. Let's give it a try, it literally always works.

 

How Long COVID Is Helping Young Women With Chronic Fatigue Syndrome

Quite a long article about the parallels between the two diseases, mostly quoting David Strain and Sonya Chowdhury. The Royal Free Hospital outbreak is also mentioned. However, I didn't really like that Strain talked about ME/CFS as if we were not sure which viruses may trigger it, except for covid. This is very common in these articles and I'm not sure if this is some sort of excuse for medicine for ignoring the issue until now.

Anyway, excerpt:

Chowdhury said she has seen a spike in the number of sufferers approaching Action for ME in recent months. They read about Long COVID in the news and recognise their own post-viral symptoms – usually originating from a different virus – and are now able to work towards an ME diagnosis. In this way the conversation around Long COVID is increasing awareness, she said.

On the other hand, she said: “People with Long COVID are seeing how poorly ME patients get treated and they are trying to distance themselves from the stigmatised disease.”

Dr Strain says there are a few reasons why ME sufferers have been dismissed and mistreated by the medical establishment for so long.

The first is that doctors believe they are at the “end stage of medicine”. That means they think they know everything.

“We are taught that doctors these days have developed the best tests for everything and that there’s no more work to be done,” he said. “That means that if you have a condition that we don’t yet have a test for, it’s easier for them to say there is nothing wrong than to admit they don’t know.”

Medical schools just don’t teach doctors to say “I don’t know”, he said. That makes them very uncomfortable treating conditions that they can’t definitively diagnose.

“It’s not a problem with the patients,” he said. “It’s a problem with the doctors.”​

Full article: https://www.refinery29.com/en-gb/2021/08/10616102/long-covid-chronic-fatigue-syndrome

 

https://twitter.com/user/status/1426997306373681156

 

The whole point of expertise is to avoid that. So what does it say about medicine that this is a widespread problem? Especially one made far worse by pervasive refusal to acknowledge it.

This is a sign not just of a broken system, but one that has been thoroughly broken for a long time and is unable to rectify itself, stuck in the same cycle of failure.

https://twitter.com/user/status/1427372008103419911

 

Given the CDC's historical, and ongoing, failure on this issue, it would be great if questions weren't just softballs. Maybe worth asking, @dave30th? Somehow I haven't seen anyone have to face the fact that this was not only predictable but actually predicted, despite no one in a position to do so doing anything about it.

https://twitter.com/user/status/1427344549228208129

 

The Conversation: Deciphering the symptoms of long COVID-19 is slow and painstaking - for both sufferers and their physicians by Allison Navis, Assistant Professor of Neurology, Icahn School of Medicine at Mount Sinai

Quotes:

This doesn’t mean we are at a complete loss about what is happening. The constellation of symptoms resembles a post-viral syndrome, which refers to prolonged symptoms after an infection. Sometimes the infection might be from a known source, such as Epstein-Barr virus (which causes mononucleosis), but often symptoms follow a general viral illness.

...

As a result, we researchers need to engage broadly across communities to ensure we fully understand who is affected by long COVID-19, as well as what risk factors might be at play in determining long-term outcomes. Research needs to also focus on gaining a better understanding of the less understood diseases like myalgic encephalomyelitis, as they seem to most resemble what we are seeing.

 

How totally unexpected and novel, to see symptoms that resemble a post-viral syndrome, after a virus.

I'm not surprised that this has caught everyone, apart from those who warned it was probably going to happen to some, on the hop.

Or that it's still doing so.

I mean who could have predicted post viral symptoms after a virus?

[/despondent dripping sarcasm mode off]

 

it's when they get round to considering the alleged pre-virus symptoms that it will become interesting.

 

The Naked Scientists Long COVID: how many are suffering?

Quote:
And what about other viral infections? Cause we hear things like chronic fatigue syndrome; that can be set off by things like glandular fever as far as I'm aware. Is this really special to COVID or is there something more general to other viral infections too?

- I think there is an element of something that is common in sort of post viral syndromes. And this is where I think it gets very complicated in terms of diagnosis. Cause I think it's quite clear that we're not looking at a single disease.

We're probably looking at multiple diseases. Some of them associated with the severe infection and lung problems that people have if they've sadly had to go into intensive care, but a lot of the fatigue related illness, it's very reminiscent of chronic fatigue syndrome.

And so I think we and others are looking at that in detail to see whether or not there is something very specific about SARS-CoV-2, or whether this is a general feature that we see with chronic fatigue.

 

The Naked Scientists have more recent coverage about Long Covid:

What's causing long COVID? Interview with Akiko Iwasaki

quote:
- .. vaccination may not guarantee a person from not getting long COVID. In fact, there is some evidence that's arising that shows that people who are fully vaccinated can get long COVID from breakthrough infections.

Trying to treat long COVID Interview with Mark Toshner

Quote:
- There are going to be a lot of snake oil salesmen, and already there are, colonising the space. So just be really wary of anybody who tells you they know the answer. If they are pretty convinced and pretty convincing, they are probably not right, because there are no really good, well-evidenced treatments yet.

Long COVID: Developing a diagnostic test Interview with Danny Altmann

 

Long Covid and chronic fatigue — your questions answered | News | The Times (paywalled)

Wednesday August 18 2021, 3.00pm BST, The Times

https://www.thetimes.co.uk/article/long-covid-and-chronic-fatigue-your-questions-answered-qpv3xrwrx

Submit a question in advance and come back on Friday, 1-3pm, to see what our panel of experts has to say

As many as two million people in the UK may have had long Covid since the pandemic began, experiencing a range of symptoms from fatigue and muscle pain to coughs and headaches for a prolonged period of time.

Though the condition is not well understood, parallels have been drawn with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. Scientists and patients are hoping that studies into long Covid will lead to a long-overdue deeper understanding of ME.

About 250,000 people in the UK suffer from ME, which can be [...]

https://www.thetimes.co.uk/article/long-covid-and-chronic-fatigue-your-questions-answered-qpv3xrwrx

Edited to add:
Would be interesting to know who is on the expert panel -- and if it is worthwhile to submit questions.

Don't have access to the article myself.

 

Just seen a post about this by Action for ME that answers your question...