Long Covid in the media and social media 2022

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'Frances Williams, a professor of genomic epidemiology and part of the team running the Zoe Covid Symptom Tracker app — the world’s largest study of the disease — says in this scepticism we can see parallels with the myalgic encephalomyelitis (ME) community, who also deal with a wide range of symptoms including extreme tiredness. “The notion that [illnesses] are ‘all in your head’ is 30 years out of date,” she says. “Part of the problem the ME community has had is [people] trying to split physical and mental illness — the two are intimately related.” Williams believes that expanding our comprehension of ME could be “very insightful” for understanding long Covid, and vice versa. “I don’t see anything that tells me it’s a completely different beast.”



The article may be clearer about Long Covid but on ME the quote from Frances Williams is same old same old.

"Extreme tiredness". "...physical and mental illness - the two are intimately related".

How the hell is calling ME "tiredness" progress? It's not, it's going backwards.

What happened to PEM? An abnormal response to exercise. Why won't scientists and journalists use that term. How has the word "Tiredness" taken hold of minds in relation to ME to the extent that journalists (and it appears some scientists) just can't stop parrot-repeating it.
 
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There so much to unpack here that I don't even know where to start.

https://brownstone.org/articles/how-masking-contributes-to-long-covid/

Symptoms Long Covid link to MIES

At this point there has been limited attention for a possible relation of Long Covid and exposure to chemicals in masks, nasopharyngeal tests and disinfectants. In a meta-analysis by an interdisciplinary team of German physicians, a potential risk of Mask Induced Exhaustion Syndrome (MIES) has been found. The most frequently observed symptoms (fatigue, headaches, dizziness, lack of concentration) as described for MIES overlap with important symptoms for Long Covid syndrome.

The lack of smell and taste during Covid-19 seems to be different as compared to symptoms during the flu. A lack of taste and smell are frequently observed after chemotherapy in cancer treatments and has been linked to malnutrition, inflammation and depression. Also, brain fog is a symptom occurring after chemotherapy. It seems likely that harmful effects by long-term mask-wearing and frequent nasopharyngeal testing with increased exposure to chemicals (not naturally found products) can accelerate symptoms and contribute to Long Covid.

Up to now, the safety of long-term and frequent wearing of masks and taking nasal swab samples in a delicate area in the nose, often by hardly experienced persons, have been poorly investigated. Severe nose bleedings (epistaxis), cerebrospinal fluid leakage , vomiting, dizziness and fainting have been reported. Most frequently used masks and nasopharyngeal tests are derived from China with less strict controls and measures for the presence of hazardous materials.

In several countries masks and nasopharyngeal tests delivered by governments were taken from the market. Microplastics, nanoparticles (graphene oxide, titanium dioxide, silver, ethylene oxide, coloring compounds, fluorocarbon (PFAS) and heavy metals have been found in masks and nasopharyngeal tests. Unfortunately, not all masks and tests used during the pandemic are controlled. A report from the Dutch Public Health institute (RIVM) released in November 2021 stated “the safety of masks cannot be guaranteed.”

The short- and long-term impact of frequent exposure on the physiology and physical and mental functioning of the human body is unknown. Harmful effects for children, who are less able to detoxify, could result in a compromised immune and nervous system resulting in repeated and rare infections with more chronic diseases during aging and less healthy future generations.

Microplastics and nanoparticles withdraw proteins, vitamins and minerals forming bio- corona (microclots), accumulating in important organs (blood, liver, gut, lung tissue), and disturb important physiological and immunological processes

The liver, lungs and gut are important organs in energy metabolism, detoxification and surveillance by the innate immune system. Disrupting a delicate gut-liver-brain axis can relate to fatigue and exhaustion.
 
So...according to her, LC is caused by doing exactly what people were instructed to do, what in most cases they were legally mandated to do?

Of course, if the problem is use of substandard and non approved equipment, applied by untrained persons, then obviously absolutely no medical staff will have LC.....


If this is 'fact' then;

1
2
3

Everyone sue the Government, and all of it's departments/agents.

Obviously the Government will also have to sue itself, as people who work for it, and followed all the rules, if any government employees indeed did, may also have LC.
 
Two interesting twitter threads, one by the Scottish royal astronomer and by an immunologist with MS who notices the similarities in his struggle getting diagnosed, how this problem is systemic:

#LongCovid update at 5 months: no progress to report - so instead a on things best not to say to someone with Long Covid:
1: Wow you’ve been housebound for X whole months, how absolutely terrible that you’re missing out on so much.
No reminder necessary
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Let's talk about Post-acute Viral Syndromes like Long COVID and ME/CFS (Myalgic Encephalitis/Chronic Fatigue Syndrome). These are highly debilitating conditions that follow an acute viral illness, but are chronic and in many cases poorly understood.
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It sure would be great if people who know nothing about the topic, like Frances Williams, would stop opining out of ignorance and especially lying about verifiable things. Especially in the media. The amount of shameless lying in healthcare is completely out of control, it's clearly been normalized for so long that no one even thinks twice about it, it's a daily standard now.
 
In every other profession and industry, experts act before disasters happen, at least try to prevent them. I don't understand how it's OK for healthcare industry to operate on the basis of doing nothing unless a problem completely cripples the entire system. Because the message here is very loud and clear: unless you sick people with your complaints completely render healthcare services unable to function, no one cares, no one does anything, sick people are of no concern to anyone in this industry as long as they don't see or hear from them.
Long Covid could cripple health service with over 336,000 patients
Government must treat the surge in #LongCovid patients with the same urgency as the initial Covid-19 infections.
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Meanwhile the thousands of us who warned about this are still completely ignored, no one even acknowledges that people warned about this disaster, warnings that are still ignored.
 
SBU (The Swedish Agency for Health Technology Assessment and Assessment of Social Services) has published their final report on their systematic evidence review of treatments and rehab for long covid.

Available in English here:
https://www.sbu.se/en/publications/...d-19--effective-treatment-and-rehabilitation/

Swedish version here:
https://www.sbu.se/sv/publikationer/sbu-bereder/postcovid/

The Swedish Covid Association summarises and comments on Twitter:
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The Swedish Covid Associaion Twitter thread auto-translate said:
SBU has completed its report on the review of the scientific support for treatment and rehabilitation of post-covid.

Since the government assigned them the task, we the Swedish Covid Association has argued that it is too limited:

1) Research is still in the process of pinpointing the mechanisms behind postcovid and it is complex. Some kind of well-founded theory is needed before starting a treatment study.

2) Treatment studies take time to conduct. Setting the deadline for reporting at August 15, 2022 means that the SBU will not have much to report.

Were we right? Yes.

- SBU identified 11 articles on treatment and rehabilitation in postcovid that were assessed as having a moderate risk of systematic error.

- SBU did not identify any scientific treatment studies conducted on children with postcovid.

"Overall, the scientific evidence has very low reliability. It is therefore not possible to assess whether any of the treatments or rehabilitative measures studied are effective or not, based on the evidence identified by the SBU."
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Merged thread.

August 16, 2022 | Evidence is emerging that long COVID (formally “post-acute sequelae SARS-CoV-2 infection,” or PASC) bears a striking, molecular-level resemblance to the disabling and complex illness now known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). One key difference is that long COVID has one causal agent, the SARS-CoV-2 virus, while ME/CFS has multiple potential sources, says Warren Tate, emeritus professor in the department of biochemistry at the University of Otago (New Zealand) who has been studying both post-viral disorders.

The similarities between long COVID and ME/CFS are particularly intriguing to Tate, whose daughter’s health dramatically deteriorated more than 30 years ago after a bout of glandular fever, commonly known in the United States as the Epstein-Barr virus and best known for causing mononucleosis. With every viral illness, including the flu, “a forgotten minority population” experiences lingering physical, cognitive, emotional, and neurological difficulties long after they have fought off the infection, he says.

COVID-19 has been an unexpected game-changer in that it has put post-viral syndromes on the radar of clinicians and scientists, bringing attention and resources to the study and treatment of PASC, continues Tate. Long COVID is thought to impact as much as 30% of the population infected by SARS-CoV-2, threatening to produce a secondary pandemic.

Tate says he is hopeful progress will be made in not only ameliorating the symptoms of long COVID but finding a way to reverse the condition and get the brain functioning normally again. Less certain is whether research to that end will extend to ME/CFS.
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https://www.bio-itworld.com/news/20...chronic-fatigue-syndrome-have-a-lot-in-common
 
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Article on Long Covid published in the "Le Nouvelliste", newspaper of one of the main cities of the Province of Quebec (Canada). The people interviewed describe well what it is like to live with LC, the major impacts on life and the little information, help and support from the health system and the government. ME is also mentioned, which is quite new here (finally !). It also talks about pacing, current research, and the fact of having neglected research on post-viral diseases for too long ...

“I have to learn to accept that my life before, it may not come back. This is probably what is the most difficult, to accept. But if I choose to speak about it today, it is to help others who suffer in silence. And also to say that we will have to be helped, because we have no idea how much there are people who are suffering at the moment.
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Marie-Ève Marchildon's life changed completely on March 18, when she contracted COVID (...) who had nevertheless received her three doses of vaccines. If the disease only added to her a few small discomforts during the first 48 hours, she was completely struck down from the third day. And for five months, Marie-Ève has been struggling to climb the slope, she who was diagnosed with a severe form of Long COVID.
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Postural tachycardia, respiratory problems, intense shortness of breath, memory loss, loss of concentration and above all, extreme fatigue that forces her to sleep almost 20 hours a day without ever recovering, this is what life looks like now for this woman who was yet very active and who worked as a representative in the food industry..
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Because beyond the 15 weeks of health insurance provided for by the government, a largely insufficient period for affected patients, many people struggle to have the diagnosis recognized by their insurer, their employer or even the RRQ.
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Because if we tended to think that a drop in energy could be relieved by encouraging effort, we now know that it is rather the opposite for long COVID.
“Physical and cognitive effort is the sinews of war(...)
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About twenty clinical trials are currently underway to test the effectiveness of certain drugs on the effects of long COVID, including those similar to myalgic encephalomyelitis, formerly called chronic fatigue syndrome. We also study the various potential hypotheses likely to be sources of development of the long COVID. Among them, the professor identifies the possibility that the virus has caused damage to blood vessels through the formation of micro blood clots, the persistence of virus replication in certain reservoir organs or even a dysfunction of the immune response.
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“ We are currently thirty years behind in research on disabilities following viral diseases. We haven't paid enough attention to that, and that's why we're here. Our Sherbrooke clinic initially accepted patients from all over Quebec, but we now have four to six month waiting lists (...)"
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Carrie Anna McGinn believes the government needs to talk more about the effects of Long COVID when talking about the pandemic...even if it doesn't pay off politically.

“Looks like the Long COVID victims were intentionally overlooked. But I believe that if we communicated the risks better, if we explained well to people what persistent symptoms they can live with, that we can even develop a condition that will make us unfit for work forever, I believe that people would be more able to make an informed decision on the measures to adopt to protect themselves from the virus”, she confides.
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https://www.lenouvelliste.ca/2022/0...-vie-bascule-c69f7dc09ccea7af29927a0b5b35487c (French)

*All excerpts are translations from French
 
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mango said:
SBU (The Swedish Agency for Health Technology Assessment and Assessment of Social Services) has published their final report on their systematic evidence review of treatments and rehab for long covid.

Available in English here:
https://www.sbu.se/en/publications/...d-19--effective-treatment-and-rehabilitation/

Swedish version here:
https://www.sbu.se/sv/publikationer/sbu-bereder/postcovid/

The Swedish Covid Association summarises and comments on Twitter:
Click to expand...
Articles with low risk of bias: 0.

At least there's some basic sanity here but I don't see a conclusion or findings. This has literally been standard treatment for years and it's on this basis that people want to use it here again. Are they just avoiding admitting it's a waste? It's maddening that we can have both realities at once: not enough evidence to conclude either way, but also it's standard treatment. Good grief the decision paralysis while people's lives are wasting.
 
rvallee said:
In every other profession and industry, experts act before disasters happen, at least try to prevent them. I don't understand how it's OK for healthcare industry to operate on the basis of doing nothing unless a problem completely cripples the entire system. Because the message here is very loud and clear: unless you sick people with your complaints completely render healthcare services unable to function, no one cares, no one does anything, sick people are of no concern to anyone in this industry as long as they don't see or hear from them.



Meanwhile the thousands of us who warned about this are still completely ignored, no one even acknowledges that people warned about this disaster, warnings that are still ignored.
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This led to this article in a national newspaper in Ireland:
https://www.irishexaminer.com/news/arid-40940651.html
 
NB: This article was written by someone whose cognitive function has been impacted by Covid-19. It was worked on in one-hour chunks over several weeks as brain clarity, pain and energy levels allowed… often from bed.

This pandemic has been brutal, right? It upended my family’s life in a multitude of ways, but throughout the first two years whenever I felt myself freaking out about job losses, solo parenting in lockdown, or the MIQ roulette my overseas husband was playing, I’d remind myself of all the people who’d succumbed to the virus and the loved ones left behind. “At least I have my health” became an oft-repeated mantra for the moments when it all felt too much. Then in March, Covid-bloody-19 descended upon our household and hit me hard. Unfortunately, I’ve never recovered.
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https://thespinoff.co.nz/society/17...ovid-get-strength-from-growing-facebook-group
 
A rare news story about long Covid from Norway. No mention of ME.

It's about a study, Symptom burden and immune dynamics 6 to 18 months following mild SARS-CoV-2 infection - a case-control study, 2022 (Bergen COVID-19 Research Group et al) who followed up 233 Covid-19 patients from the start of the pandemic and found that 46% are struggling with different long term symptoms, and that these symptoms can also get worse with time.

Everyone were infected with the first Wuhan-virus, but the researchers say that they see sign of just as much problems with the new variants, even though they usually give milder infections. None of the participants were hospitalised and they had normal health to begin with.

The group includes people with less severe symptoms as coughing and headache, but 39% reported of fatigue after six months. 22% reported of difficulty in concentration and 21% reported of memory problems. Those who struggled with concentration and memory report of deterioration after 18 months.

One of the researchers says that this is bad news particularly for those who are dependent of being mentally on top, as students, pupils and those starting up in new jobs.

Research director from the Norwegian Institute for Public Health, Signe Flottorp, says the study is interesting but that we now know that vaccine protects against persistent symptoms and that Omicron has lower risk of long covid than the previous variants. She worries that people might get scared of something that's not as relevant anymore. It's not good that the participants have been struggling for a long time, but luckily few experience serious symptoms.

She further says that those who are vaccinated are better protected against severe Covid-19 and against persistent symptoms.

The article ends with one of the researchers saying that she's been able to avoid the infection herself and advice people to be careful and try not to get the disease.

TV2 Nedslående funn om lang-covid: - Spesielt dårlig nytt for studenter og skoleelever
google translation Disappointing findings about long-term covid: - Particularly bad news for students and school pupils
 
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