Long Covid in the media and social media 2023

[Kalliope]

The Conversation
Existential crisis: how long COVID patients helped us understand what it's like to lose your sense of identity and purpose in life

quotes:

Over an 18-month period from October 2021, we conducted three rounds of interviews with 80 people from diverse age groups, geographical locations and socioeconomic backgrounds throughout the UK.

...

To make matters harder, diseases such as myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) and long COVID are viewed with scepticism in some quarters. A reluctance to acknowledge these crippling health issues can potentially hinder both diagnosis and support for sufferers – and exacerbate their sense of isolation.

...

What seems remarkable is that the existential concerns shared with us transcended age, ethnicity, health and wealth, affecting individuals from all walks of life. In this, our study echoes previous research into people with chronic, acute and terminalillnesses, as well as of older people grappling with “feeling forgotten” and fading away, and of teenagers and middle-age individuals during major life-stage transitions.

 

[ahimsa]

From the San Diego Union Tribune:

Opinion: Study shows ‘long COVID’ likely to cause mass misery if treatments can’t be developed

https://www.sandiegouniontribune.co...-heart-disease-alzheimers-diabetes-depression

But a massive new study confirms that COVID-19 — specifically, “long COVID,” which can kick in well after an initial infection — remains a significant risk even for those who had the mildest of cases. The findings strongly suggest that barring the emergence of new treatments for long COVID, it will be a daunting health threat going forward to many Americans, especially older individuals.

Ziyad Al-Aly, a clinical epidemiologist at Washington University in St. Louis, led a team analyzing data from the U.S. Department of Veterans Affairs on the medical histories of 140,000 patients who tested positive for the COVID-19 virus in 2020. According to their report published Monday in the Nature Medicine journal, these individuals had significantly higher rates of death and many health conditions — including heart failure, diabetes, Alzheimer’s disease and depression — than 6 million patients with no confirmed infections that year. While differences between the groups lessened over time, they remained very significant — even among those whose cases were minor enough that they were never hospitalized. Elevated health risks for about 30 percent of this group remained two years later. That figure jumped to two-thirds for those who were hospitalized, who were more than twice as likely as those in the control group to be diagnosed with Alzheimer’s disease and were about 50 percent more likely to suffer heart failure.

Given that 103 million Americans and 770 million people worldwide have been diagnosed as having contracted COVID-19, a future of misery could await a stunningly large cross-section of humanity. This illustrates why Eric Topol — the local Scripps Research physician-scientist who has been a national resource providing informed common sense on COVID-19 — has warned for years over the dangers of ignoring the risks posed by long COVID and lobbied for more research on treatments.

Edit: Someone posted this image on twitter. I think it's a photo of the hard copy version of the same article. Adding it here in case there's a paywall for some folks.

 

[rvallee]

What are the best papers (academic or published in a major outlet) on how the biopsychosocial model has harmed ME/CFS, #LongCovid, or other similar patient populations?

Many good replies already, but if you can think of any, this could be useful. Davis is a prominent voice in the LC community and has the hear of many researchers.

 

[Sly Saint]

Many good replies already, but if you can think of any, this could be useful. Davis is a prominent voice in the LC community and has the hear of many researchers.

suggest she has a look at s4me, and does a title search on biopsychosocial. plenty to choose from.

 

[SNT Gatchaman]

NZ Herald — Covid-19: Why scientists remain troublingly far from understanding Long Covid

Paywalled, but archived here.

Dr Martin Kraeter, a research fellow at Germany’s Max Planck Institute and a visiting speaker at the Australasian Cytometry Society’s Queenstown conference, suspected the answer might be found within our cells.

Back in his Erlangen laboratory, Kraeter and colleagues have been analysing cells as they flow through the bloodstreams of Covid-19 patients.
“We’ve seen in patients with Covid-19 and Long Covid that they have lots of red blood cells that don’t deform properly anymore,” he told the Herald.
“That means they can’t take up oxygen and makes the blood more sticky - or more like honey than water – and we’re still seeing this in some of the patients in our study cohort, long after they’ve recovered from the primary disease.”

“As far as the illness is concerned, we now know that the virus can cause disruption to our immune, neurological, nervous and metabolic systems,” conference convenor and leading University of Auckland immunologist Dr Anna Brooks said.

Its driving mechanisms possibly included dormant viruses in our bodies being “reactivated” through a loss of immune control or dysfunction, or the virus lingering in the body for prolonged periods.
Another was Covid-19 damaging the nervous system, blood cells and the powerhouse mitochondria which produce energy within all our cells.

To date, she said, most of that work had been crowd-funded.
“Our research is focused on characterising immune dysfunction, with the aim of developing diagnostic tools to enable clinical diagnoses and therapeutic targets,” she said.
“Already, we’ve established a number of international collaborations to fast-track this work, but the lack of funding to follow up on promising leads, at the pace required, is frustrating.

 

[Jaybee00]

Pretty cool

https://twitter.com/user/status/1695908704451973249

 

[Solstice]

suggest she has a look at s4me, and does a title search on biopsychosocial. plenty to choose from.

Most of it disseminated already too.

 

[mango]

Mottagning för barn med postcovid hotas av nedläggning
https://sverigesradio.se/artikel/mottagning-for-barn-med-postcovid-hotas-av-nedlaggning

Clinic for children with post-covid threatened with closure

The only clinic in Sweden that works with rehabilitation of children with post-covid may be closed down due to Region Östergötland's tough economic situation.

The clinic at Linköping University Hospital has existed for three years and also conducts research.

"It's an unwise decision because it's such a small cost for a group with a lot of suffering," says Per Ertzgaard, chief physician at the clinic.

 

[rvallee]

NZ Herald — Covid-19: Why scientists remain troublingly far from understanding Long Covid

Paywalled, but archived here.

Back in his Erlangen laboratory, Kraeter and colleagues have been analysing cells as they flow through the bloodstreams of Covid-19 patients.
“We’ve seen in patients with Covid-19 and Long Covid that they have lots of red blood cells that don’t deform properly anymore,” he told the Herald.
“That means they can’t take up oxygen and makes the blood more sticky - or more like honey than water – and we’re still seeing this in some of the patients in our study cohort, long after they’ve recovered from the primary disease.”

Red blood cells deformation is making a comeback, uh? It's really incredible how almost everything ME/CFS has been replicated with LC. Just not as a unique snowflake that applies to everyone and remains stable in time. A shift as significant as having to use high resolution video where usually a single low-quality photo works fine.

So honestly I think that not only do we have our biomarker already, we've had it for years. It's just that it's different from the usual "one simple thing that one test can validate" that medicine typically requires, simply to get started doing anything. It's a sum of several markers that aren't all present, aren't always present either. A complex dynamic thing, in a context where simple and static rules everything.

Really it's beyond obvious how this needs its own specialty, research institutes and training path. And journals, and funding sources. And on and on. And I don't think the human doctors will do that, they're out of their depth and unable to accept they got it so wrong. So everything still rests on AI medicine, the only technology capable of overcoming human resistance and stubborn denial.

All we need is to change medical culture and we made it. No big deal. A thing that never changes, has to radically change. Awesome. It should be about as easy as dealing with climate change.

 

[Midnattsol]

A Swedish news channel have asked for people to tell their stories of how the covid pandemic has affected them. Lots of long-covid stories (in Swedish).

https://www.svt.se/nyheter/lokalt/stockholm/chatt-har-du-kvar-symtom-efter-covid

 

[rvallee]

Long form article in New York magazine, that is frankly disappointing given its length, and a mere single mention of ME/CFS as a precedent for Long Covid, and only in the context of brain fog. Which, despite what the article says, is not a "medical catch-all" for anything, it's not recognized at all, hence the patient-made term.

It talks about POTS a bit more, but really for a long form article, it's very superficial and largely focused on a single doctor, not what's happening to patients and the mass of disability that was predicted by so many people. I think that's what the magazine is about, but it comes off really light and a bit egocentric to me.


The Mystery of Long COVID Is Just the Beginning
At Yale’s clinic, medical sleuth Lisa Sanders is trying almost everything.

https://nymag.com/intelligencer/article/long-covid-treatment-lisa-sanders.html

The most common symptoms of long COVID can have many causes. Brain fog, for example, is a medical catchall that means failures of memory and cognition and inability to concentrate. It can be part of ME/CFS, also known as myalgic encephalomyelitis or chronic fatigue syndrome, which shares many symptoms with longtail syndromes like long COVID. Or it can be a symptom of another disease: anemia, diabetes, Alzheimer’s. It can be a side effect of medication. Aging, menopause, stress, lack of sleep — all these can cause brain fog. In addition, “brain fog” has entered the vernacular in a casual way to describe office fatigue, pandemic fatigue, boredom, dissatisfaction, or the aftereffects of a long night out at the bar.​

It's more of a profile of a single MD:

 

[Kalliope]

TIME Long COVID Recovery Remains Rare. Doctors Are Struggling to Understand Why

quotes:

Since August 2020, David Putrino, director of rehabilitation innovation at New York’s Mount Sinai Health System, has helped treat more than 3,000 people with Long COVID. These patients, in his experience, fit into one of three groups.

A small number, no more than 10%, have stubborn symptoms that don’t get better, no matter what Putrino and his team try. A big chunk see some improvement, but remain sick. And about 15% to 20% report full recovery—an elusive benchmark that Putrino greets with cautious optimism.

...

“It’s really hard to tell” exactly how many people get over their symptoms entirely, says Dr. Ziyad Al-Aly, a clinical epidemiologist at Washington University in St. Louis who researches Long COVID. “But anecdotally, from clinical experience, the majority unfortunately don’t.”

 

[rvallee]

TIME Long COVID Recovery Remains Rare. Doctors Are Struggling to Understand Why

quotes:

Since August 2020, David Putrino, director of rehabilitation innovation at New York’s Mount Sinai Health System, has helped treat more than 3,000 people with Long COVID. These patients, in his experience, fit into one of three groups.

A small number, no more than 10%, have stubborn symptoms that don’t get better, no matter what Putrino and his team try. A big chunk see some improvement, but remain sick. And about 15% to 20% report full recovery—an elusive benchmark that Putrino greets with cautious optimism.

...

“It’s really hard to tell” exactly how many people get over their symptoms entirely, says Dr. Ziyad Al-Aly, a clinical epidemiologist at Washington University in St. Louis who researches Long COVID. “But anecdotally, from clinical experience, the majority unfortunately don’t.”

Was about to post this. The article is overall pretty good, and although it starts well by properly labeling the protest photo as a ME/CFS and LC protest, it makes zero mention of ME/CFS. Testimonies of long haulers who thought they recovered, then relapsed are becoming the majority of posts on the LC subreddit. Which completely debunks any old junk about excessive rest or worrying.

There is this:

Zeroing in on the Long COVID recovery rate is a work in progress, but two recent reports from the U.S. Centers for Disease Control and Prevention suggest remission is possible.

One, based on U.S. Census Bureau data, found that roughly 6% of U.S. adults currently have Long COVID, down from about 7.5% in the summer of 2022. The other found that many people’s symptoms disappear over time. A year post-infection, people who’d had COVID-19 were roughly as likely to have lingering symptoms as people who’d had other respiratory illnesses, the researchers found.

Obviously remission is possible, no one is saying otherwise. This is not the issue. The issue is that it's completely disbelieved by medicine that full recovery is not 100% guaranteed, and in weeks, not months or years. The bolded part is also annoying, since no one ever said that. In fact the important fact is that this is a common issue, one where recovery is not guaranteed, and medicine is in complete denial over the whole thing from any pathogen, not just recovery from SARS-CoV-2. It's been insisted ad nauseam in recent years that the process of immunity is either full recovery without any sequelae, or death. No in-between, this is the dogma.

It has been the whole point of controversy over decades that medicine disputes the fact that infections have anything to do with this. It's always been blamed instead on some generic psychosocial problems, basically reduced to "shit life syndrome" and believed to be either of depression or somatization by the vast majority of MDs, which actually shows that they don't know what either of those things are, and certainly can't tell the difference.

The entire point of inventing CFS was to remove all associations with infectious illnesses, to make it fully generic. And this erasure continues, as if it wasn't done on purpose and caused massive ongoing harm. It's extremely demoralizing how basic facts simply cannot penetrate the bubble of the medical profession. They're supposed to be serious professionals, guided by science. But clearly they aren't, politics rules everything.

 

[Adam pwme]

 

[rvallee]

Article in a German medical magazine (self-described as "the largest community for medical professionals in Europe"), written by a psychologist annoyed at having patients with Long Covid referred to him by GPs.

DocCheck: Long Covid is not depression
https://www.doccheck.com/de/detail/articles/44702-long-covid-ist-keine-depression
Translated link: https://www-doccheck-com.translate....=auto&_x_tr_tl=en&_x_tr_hl=en&_x_tr_hist=true
(Not sure if the translate URL works. You may have to use your browser to do it instead.)

Since about the beginning of this year I have been seeing patients who come with referrals from their family doctor. Reason: non-specific complaints - psychotherapeutic clarification. Or: questionable depression . To my own surprise, the desperate people primarily report physical symptoms such as dizziness, shortness of breath, ringing in the ears, myalgia and gastrointestinal complaints.​

When I checked there were over 170 comments, and they're not so bad. In the context of things having been so awful for so long and Germany being a hotbed of psychosomatics, anyway. There's even some direct criticism of the psychosomatic model being no longer tenable for ME/CFS and LC. The article doesn't talk about ME/CFS, and yet many comments from professionals do. Somehow, used as ME/CFS in the original German.

If you want to leave comments on Twitter:

 

[rvallee]

Psychiatric times: Dismantling Health Care Discrimination Toward Long COVID
https://www.psychiatrictimes.com/view/dismantling-health-care-discrimination-toward-long-covid

Examination of the negative interactions long-haulers experience with their medical providers reveals 2 significant trends: lack of understanding of long COVID and/or dismissal of long-haulers’ concerns. Unfortunately, what many long-haulers find is that they are now newcomers to a long line of medical stigmatization that has historically included HIV, chronic fatigue syndrome, Lyme disease, fibromyalgia, and lupus (Table).
...
For years, studies have consistently shown the rampant epistemic injustices experienced by those with chronic fatigue syndrome, fibromyalgia, and chronic pain. In the case of long COVID, research clearly demonstrates the link between such epistemic injustice and stress, depression, anxiety, and health-related quality of life.4,12​

I find the article a bit too avoidant of clinical psychology and psychiatry's role in this stigma and discrimination, especially the second paragraph I quoted, but overall not bad. Indeed that association has been used for decades to be reattributed as causative.

Doesn't appear to have comments.

 

[Kalliope]

NPR It's likely you know someone dealing with long COVID

Excellent audio interview with Hannah Davis and Ed Yong on Long Covid and also a lot about ME. Duration 24 minutes.

 

[Mij]

 

[rvallee]

Op-ed by US senators Tim Kaine, who has mild Long Covid and Todd Young, as well as former senator Jim Inhofe, who retired because of Long Covid.

For those not familiar with US politics, the US senate is unique in being the far stronger chamber of the legislature, whereas typically senates/upper chambers, are mostly or entirely symbolic. There are 100 of them and they have considerably more power than typical members of national legislatures.

After the pandemic ends, long COVID still needs congressional attention
https://thehill.com/opinion/congres...ng-covid-still-needs-congressional-attention/

But for some, normality still feels a long way off. According to estimates, 1 in 20 Americans may have long COVID — the diagnosis given to individuals living with the residual effects of COVID-19. Americans diagnosed with long COVID report a wide array of symptoms, including fatigue, nerve tingling, brain fog, gastrointestinal issues and dizziness. Some have very minor, nondebilitating symptoms, while others have symptoms that are severe enough to keep them out of the workforce.
...
First, long COVID continues to deserve attention from public and private sector researchers. We were pleased that Congress recently directed $1.15 billion in federal funding to the National Institutes of Health (NIH) to better understand the long-term effects of COVID-19. Private companies are testing existing and novel therapies against long COVID. Congress should, at once, prioritize funding for research to better understand long COVID while scrutinizing NIH’s work for efficiency, urgency and transparency.
...
Long COVID continues to impact millions of Americans. It does not care where you live, how much money you make, or if you are a Republican or a Democrat. As Congress rightfully seeks to turn the page on the COVID-19 pandemic, it should not take its eye off the ball on long COVID.​

 

[Jaybee00]

The important point in the above article is that it was bipartisan—Inhofe for example is VERY conservative.

From wiki

Inhofe was ranked the most conservativemember of Congress on the 2017 GovTrack report card.[144] He received the same ranking for 2018.[145] For 2019, he was ranked as the fifth-most conservative member of the U.S. Senate with a score of 0.91 out of 1, behind Marsha Blackburn (R-TN), Joni Ernst (R-IA), Mike Braun (R-IN), and Ted Cruz (R-TX).[146]