Long Covid in the media and social media 2023

Status
Not open for further replies.
Laurie P said:
Long COVID Is Making Some People Choose Not to Have Kids
By Jamie Ducharme








https://time.com/6268429/long-covid-reproductive-health/
Click to expand...
This could have a significant impact in the near future. There are many countries entering a population decline, and this will exacerbate it. LC hits a lot of people in their early adulthood. A lot of people who would have wanted to have children will be unable to. So many of us have been robbed of this privilege, ending relationships not because of the illness itself, but the horrible discrimination against it, and the total uncertainty that makes it impossible to plan, especially for something that demanding and expensive. Young adults are already struggling with the financial costs, this is just piling up.

There are countries giving cash and tax incentives to parents, in some cases while doing nothing to address the horrible work culture that is the main reason. Meanwhile they do nothing to fund research that would have a significant impact, because they are fully blind as to why this is happening. Making good decisions requires good evidence. An entire profession that refuses to even properly record basic data leads to absurd outcomes like this. There is not a single bit of data anywhere that makes the connection as to why I, and so many, don't and never will have children. This is knowable, and yet it is impossible to verify because of traditional belief systems. Pure genius system: blind and arrogant about it.
 
Sly Saint said:
part 2
https://www.wsws.org/en/articles/2023/04/05/long-a05.html
Click to expand...

A social and medical examination of Long COVID as a “mass disabling event”: Part 2

The end of the article talks about the lack of research funding, including for ME/CFS. Bolding is mine.
The research is at a very early stage and other issues may emerge in a longer time frame, but clearly further research is crucial in order to clarify the causes of Long COVID. While paying lip service to the necessity for such research, the capitalist ruling elites internationally have limited or denied the funding necessary for this work to proceed.

The Brookings Institute report cited above noted that the US government has allocated just $1.15 billion to study the disease, concluding “overall, the government’s record on supporting such work is poor.” It added, “as of 2021, the NIH had budgeted less than $20 million annually for research on ME/CFS, another post-viral illness.”

The $1.15 billion allotted to the NIH (National Institutes of Health) in December 2020 to study Long COVID is just 2.5 percent of the agency’s $45 billion annual budget and just 0.1 percent of the Biden administration’s unprecedented $1 trillion military budget request for the coming year. Furthermore, the Long COVID funding was a one-time, not annually recurring allocation.

In February, the British government set aside just £18.5 million for further funding into Long COVID, a miniscule amount considering the size and complexity of the problem.

In Australia, in the Albanese Labor government’s first budget, nothing was allocated for research into Long COVID. This is despite the fact that in the past year alone tens if not hundreds of thousands of Australians have become afflicted with the condition after the government lifted all mitigation measures that slowed the spread of the virus.

The lack of research funding for Long COVID is part of the ruling elites’ overall contempt for human life which has been on display continuously for the past three years of the pandemic. While allocating unlimited resources to their military machines, no resources are to be provided to alleviate the suffering of tens of millions of people globally.

The failure of governments to allocate the necessary funding for Long COVID research is bound up with their reckless program of simply covering up and ignoring the existence of the ongoing pandemic.
Click to expand...

Edited to add the title of the article.
 
Last edited:
Podcast: It's not just in your head
Ep #132: Long Covid (Dr. Asad Khan)

https://open.spotify.com/episode/2MAmfckreOnjfSNuM6PfP1

Interviewer: Yeah the lack of [specialists'] curiosity thing is fascinating because that's come up before in the sort of mental health conversations.

AK: It's an affliction. I think I need to give the listeners a bit of background about what medical education is about and what the whole system within which we work makes you do. All ... obviously long Covid is new, so it's not taught, but say for example POTS is hardly mentioned in the medical curriculum, even though it's quite common. ME/CFS, despite being so debilitating and having a worse quality of life than many cancers, barely gets a mention. Even then it's presented as this controversial condition where "ummh we're not quite sure whether it's physical or psychological". There's no mention of things like post-exertional symptom exacerbation or post-exertional malaise, or the stimulus hypersensitivity that these patients get, which are really crucial to be aware of if you get a patient with this condition.
Click to expand...

AK: Mast cell activation syndrome. I'd never heard of it until I got it myself, and I've been a doctor how long? We are just not taught this stuff. And yes, even if you're not taught you should remain curious and forever learning. But we work within a system that rewards where the whole emphasis is on processing patients, rather than really delving deep. So it's exclude and reassure.
Click to expand...
 
Medscape Doctor's Checklist for Treating Long COVID Patients

Mentions among other PEM, dysautonomia and exercise intolerance.

Quote:

PEM is the worsening of symptoms after physical or mental exertion. This usually occurs a day or two after the activity, but it can last for days, and sometimes weeks.


"It's very different from fatigue, which is just a generalized tiredness, and exercise intolerance, where someone complains of not being able to do their usual workout on the treadmill," he noted. "People with PEM are able to push through and do what they need to do, and then are hit with symptoms anywhere from 12 to 72 hours later."
 

Blood differences in long Covid patients

New research has found molecular signature differences in the blood of patients who fully recover from Covid-19 and those who develop long Covid.

The study, which involved Cardiff University, examined blood samples from Covid-19 patients at different stages of the disease, including early stages and patients with long Covid. It highlighted major differences in the immune responses between those who recovered and those who developed long-term complications.

Professor Bernhard Moser from Cardiff University’s School of Medicine who was part of the research team said: “A considerable number of patients infected with Sars-Covid-2 during the pandemic developed long Covid, a chronic inflammatory condition characterised by fatigue, muscle pain, shortness of breath and other symptoms.

“The reason why some Covid-19 patients develop long Covid is currently not known but may be multi-factorial. Gaining insight into this disease at a molecular level may open avenues for treatment.”

The research highlighted that long Covid patients showed differences in chemokines, a group of proteins secreted in response to Covid-19 that orchestrate inflammatory immune responses.

Professor Moser said: “Our research showed that levels of chemokines were elevated in Covid-19 patients, contributing to the inflammation we see during Covid-19 infection. Importantly, we also found that Covid-19 patients produce auto-antibodies against chemokines.

“In patients that recover from Covid-19, molecular analyses of these antibodies revealed that they neutralise the function of a set of chemokines, suggesting that they act against inflammation and contribute to disease resolution.

“But in patients with long Covid, auto-antibodies that work against three distinct types of chemokines are missing, suggesting that lack of their production contributes to chronic inflammation underpinning long Covid.

“This study shows that the molecular signature in blood differs between patients who fully recover from Covid-19 and patients who develop the chronic inflammatory condition associated with long Covid. Auto-antibodies for certain chemokines are beneficial for Covid-19 patients in that they seem to prevent the development of long Covid.”

https://www.cardiff.ac.uk/news/view/2713678-blood-differences-in-long-covid-patients

Thread here: Autoantibodies against chemokines post-SARS-CoV-2 infection correlate with disease course, 2023, Cavalli et al
 
Last edited by a moderator:
Alan Carson, of FND fame, supporting "properly conducted" trials of exercise for Long Covid.

"Despite the anxiety it remains case that no randomised trial or systematic review of trials has ever shown harm from exercise in PEM- whilst NICE often cited it did not find any RCT evidence of harm. Properly conducted trials will tell us one way or t’other- important question"

Click to expand...
 
Clearly, causing severe disability in thousands, millions even, is not considered harm. It simply has to not be recognized by the people doing the harm. Great system they got there. About as legitimate as a judge committing a crime, then saying "I'm a judge, this is not a crime" and letting it go. Absurd.

And still with the No true Scotsman logical fallacy, as if "properly conducted" means anything, after having done their definitive-but-not-so-definitive-after-all trial, especially when in real life it usually takes the form of a quick "just exercise, bit more each week" and nothing else. This makes the whole "do no harm" have quite a different twist. It's a purely bureaucratic construct.

Especially in a profession that only started doing more good than harm barely over a century ago, despite being thousands of years old.

"Pragmatic" RCTs are not a valid tool, especially not in biased hands. These people are as biased as any company pushing a commercial product, Theranos also "found" that their machines worked, behind closed doors, no you can't see it. Generic "pragmatic" trials assess nothing, it's as good as an entirely self-graded education: perfect grades, zero knowledge gained.
 
John Mac said:
More evidence of patients concerns being portrayed as abuseView attachment 19322
Click to expand...
thats extraordinary, even for BPS/FND crowd. what was the initial tweet which he condescended to 'take seriously'?

So saying 'you dont listen when you should' is abuse now? crikey i hope he's told pretty much every married couple in Britain lol!

Oh yes and every parent in the world had better be reported to their countries' social services, they are all abusing their children! :emoji_rolling_eyes: :emoji_face_palm:
 
There has been two relatively decent articles on the long term effects of covid on persons in Norway now, both single cases. One 16 year old girl who has developed POTS, and one nurse who has become disabled and is testing different alternative treatments (has tried HELP apheresis and recently hyperbaric oxygen treatment). The annoying part is the guy from our Directory of Health saying they are working hard to spread information and continuously work to provide better information. That... is quite something to say given we have guidelines from 2021 that were outdated already when they were presented.

Teen:
Erikas hjerte løper løpsk
Erika's heart is racing

Nurse:
Har betalt 500.000 for behandlingen legene advarer mot
Have spent 500.000 for treatment doctors warn agains (google translate link would not work, unfortunately)

I think the best part of these articles is the lack of Signe Flottorp saying it is mild and will pass :)
 
The last two parts of the Long Covid series by Frank Gaglioti at World Socialist Web Site has now been published. The 4th and last part is on the history of postviral illness with a couple of mentions of ME/CFS.

A social and medical examination of Long COVID as a "mass disabling event"

Part 3

Part 4

quote:
The pattern of post-viral syndrome with coronavirus infection is repeated for other species of virus. Overwhelmingly, debilitating fatigue seems to be a common symptom, often referred to as chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME) or ME/CFS. It is beyond the scope of this article to examine the entire plethora of viruses that cause post-viral syndrome or ME/CFS, but the sample considered here demonstrates the general rule.
 
Kalliope said:
A social and medical examination of Long COVID as a "mass disabling event"

Part 4
Click to expand...


Scientists have known for decades that viral infections like COVID-19 can lead to longer term consequences years and even decades after the initial acute infection. Scientifically, these are known as post-viral syndromes. The long-term manifestations of the infection can appear completely different from the symptoms of the original infection. In an earlier historical period, they were treated as unrelated medical events.
Click to expand...

It goes on to talk about SARS, MERS, Russian flu, Spanish flu, chicken pox and shingles,
Ebola virus, and Epstein-Barr virus. The following is about the Russian flu.
An October 2020 paper by researchers Mark Honigsbaum and Lakshmi Krishnan published in The Lancet quoted a 1892 letter by Josephine Butler, a victim of the Russian flu, describing symptoms reminiscent of Long COVID. She wrote, “I don't think I ever remember being so weak.” After three months, Butler had experienced little improvement, writing, “I am so weak that if I read or write for half an hour I become so tired and faint that I have to lie down.”

707839b5-7a70-4a13-98a5-0883c4a6869b

Josephine Butler, 1851 [Photo by National Portrait Gallery; published in Butler, Josephine (1909) / CC BY 4.0]

With little understanding of the condition, observers at the time gave many names to the post-viral condition, including neuralgia, neurasthenia, neuritis, nerve exhaustion, “grippe catalepsy,” “post-grippal numbness,” psychoses, “prostration,” “inertia,” anxiety, and paranoia.”

The German-born neurologist Julius Althaus working in London presciently stated that “there are few disorders or diseases of the nervous system which are not liable to occur as consequences of grip (epidemic influenza).”

The authors cite medical investigator H Franklin Parsons, whose final report for England's Local Government Board on the “1889–92 epidemic” in 1893 reported that further severe outbreaks of this post-viral condition were observed in 1893, 1895, 1898, and 1899–1900.

“The official end of the pandemic, therefore, did not mean the end of illness but was merely the prelude to a longue durée [long duration] of baffling sequelae” Honigsbaum and Krishnan stated.
Click to expand...

The following sections are from the conclusion.
As this partial review of previous post-viral illnesses makes clear, the development of Long COVID was foreseeable and clearly identified at the very beginning of the pandemic. Although scientists and Long COVID advocates warned consistently of the long-term consequences of mass infection with COVID-19, citing known precedents as proof, they were silenced by capitalist governments on behalf of the ruling elites.
Click to expand...

Biden, the 2022 #MEAction protest in front of the White House, and recent changes including the April 1st Medicaid cutback.
Last September, after US President Joe Biden falsely claimed that “the pandemic is over,” dozens of demonstrators affiliated with the patient advocacy group #MEAction protested outside the White House, chanting, “Biden lied, we died, ME treatments now!” and “The pandemic is not over! Biden’s lies are costing lives!”

This powerful demonstration was ignored by the Biden administration and met with nearly universal silence in the corporate media.

c4ccbae8-087a-4690-ae73-1fd17d6e8c22

Supporters of the Long COVID and ME/CFS awareness organization #MEAction demonstrate at the White House, Monday, September 19, 2022. [Photo: Kate Travis]

Most recently, the Democrats and Republicans have colluded to end the pandemic declarations of emergency, capping off the lifting of all mitigation measures and the dismantling of all data tracking systems. Beginning on April 1, the expansion of Medicaid at the beginning of the pandemic is now being completely rolled back, under conditions in which potentially millions of Medicaid recipients are now suffering from Long COVID.
Click to expand...
 
Last edited:
Article from Germany on children, long Covid, ME/CFS and research on treatment approaches as pacing and relaxation techniques. Looks good from the google translation.

BR24 Post Covid bei Kindern: Forschung für Therapie
Google translation Post Covid in children: research for therapy

quote:

Elli was once a competitive athlete, did gymnastics and was a cheerleader. She has been suffering from Post Covid since her corona disease in February last year, her mother continues to report: "She has not been able to go to school since March last year. It was then clear that she could no longer walk the route. Climbing the stairs is difficult. It was an incredible problem for her. She has since been diagnosed with ME/CFS ."

ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. It is considered the most severe form of Post Covid. Affected people like twelve-year-old Elli suffer from extreme exhaustion. Also, their symptoms worsen after even minimal exercise.

...

In adults, scientists assume that Corona has at least doubled the number of patients with chronic fatigue. In the case of children, we don't know for sure. Some research questions are still open here. That's why the Würzburg doctor started a research project together with the children's clinic Rechts der Isar of the Technical University of Munich. In Munich, 50 children with the diagnosis are examined in detail. In Würzburg, a therapy and training concept is to be developed and tried out for the children. Not only the children are given methods in online courses. Parents, siblings and teachers should also be made aware of how to deal with the disease.

A particularly important tool is the so-called "pacing", explains pediatrician Juliane Spiegler: "Pacing means that I never fully exhaust my energy reserves, but use a maximum of 80 percent of my energy reserves before I have to take rest breaks again. If I'm used to The fact that I can always go above my stress limit is incredibly difficult."

In addition, relaxation exercises are trained and further information is provided about the disease.
 
Thank you, @Mfairma.

Thread


Text of tweets
Matt Lazell-Fairman
@mfairma

I’ve never had a doctor understand PEM well enough to recognize it, aside from ME docs. So while I know POTS and EDS patients can benefit from careful exercise, the idea of NIH running an exercise trial in Long Covid terrifies me.

When you know PEM, it’s easy to see the rhythms it imposes in your life, but when you don’t, the disconnect between exertion and crash make it hard to recognize why some days are inexplicably so much harder.

It took me months to realize and I only did when the trigger was sufficiently strong. I began to pace, but didn’t realize until I stopped working how much I was still overexerting.

I was in a rolling crash, getting sicker and sicker, but the constant exertion made it hard to see my baseline.

It’s tougher to recognize the milder you are, the earlier you are in your illness, when you’re pushing every day to keep things moving. Patients ignorant of PEM may miss the signs. Their doctors definitely will.

NIH could carefully segregate patient populations, to exclude those reporting PEM. But will every patient recognize it? And what about those who develop PEM sometime after onset, as my wife did?

If subjects develop PEM from the treatment, will that be monitored carefully enough to minimize harm? Will it be reported?

Our concern isn’t just for subject safety, though, but for how any results will be sold.

Long Covid is an umbrella disorder, but that’s not getting through to the medical community or public. It’s treated like a vague, confusing monolith.

However carefully run the study, any positive finding for exercise in LC will be applied indiscriminately. The state of clinical care for LC and ME is so poor that to expect different is laughably naive.

A positive finding for exercise could pour gasoline on a fire the community has only just managed to begin to smother. For all of us harmed by exercise, traumatized by gaslighting, that’s horrifying.
Click to expand...
 
Status
Not open for further replies.
Back
Top Bottom