ejimNov 15, 2023
Taylor Lorenz

“Long Covid, a disease that studies have shown to have a quality of life worse than some end-stage cancers. We know it can be fatal. Many people with Long Covid have described it as a ‘living death.’

There are no cures, no established treatments, no financial support, and no incoming research funding despite the risk of Long Covid increasing with each COVID-19 infection.” https://thesicktimes.org/2023/11/14/welcome-to-the-sick-times-a-letter-from-our-co-founder-miles-w-griffis/

Welcome to The Sick Times, a letter from our co-founder Miles W. Griffis - The Sick Times

It’s not mysterious. A highly contagious airborne virus has spread around the world for the past four years and continues to infect people as I write. SARS-Cov-2 has killed an excess of 23 million people worldwide and plagued over 65 million people with Long Covid and other associated conditions.

The Sick Times - Chronicling the Long Covid crisis
Nov 15, 2023 at 7:26amMastodon for iOS
Show threadKirsty's Old AccountNov 15, 2023
@taylorlorenz
@longcovid #LongCovid 👆
Show threadNicole ParsonsNov 15, 2023

@taylorlorenz

Reminder, we still don't know who instigated Noem's refusal to cancel the Sturgis rally or DeSantis's Spring Break that seeded covid all over the USA.

We know that David Perdue convinced Trump to keep meatpacking plants open, which created covid super spreader events everywhere.

We don't know who paid Dr. Drew, Dr. Phil, & Dr. Oz to misrepresent the risks of covid exposure.

We don't know who funded Texas Lt. Gov. Dan Patrick's "Let Granny Die" callous malign influence campaign

Show threadMaggie MaybeNov 15, 2023

@Npars01 I think it’s really important to remember that the president of the United States literally forced people to go work and meat packing plants owned by Chinese folks even though they were rapidly dying at work and their bosses refused to do any kind of legitimate mitigation measures.

oh and it was also during his term some hospitals system had the audacity to think that they could sue a bunch of providers to prevent them from getting better jobs. They lost, but they tried because they knew we were in fascism

Show threadUlrikeNov 15, 2023
@maggiemaybe @Npars01
Please don't downplay the role of Kim Reynolds in Iowa. There's a reason we call her The Kim Reaper, and it's not just her history of drunken driving.
Show threadSelenaNov 15, 2023

@taylorlorenz
'worse than end-stage cancer' seems like quite an accusation: cancer is the kind of disease where people can die screaming of pain, seeking the strongest opioids that science can give them.

If that's not long-covid it should not be suggested it is: things can be terribly bad and debilitating without resorting to 'worse than cancer' shorthand.

Show threadcraftycatNov 15, 2023
@Selena @taylorlorenz Yeah, I have to agree with this. There will never be a way to get anyone to take Long Covid seriously if people keep using hyperbole to describe it. The medical field does not deal with "this is worse/better than cancer", the medical field deals with actual scientific and measurable symptoms and issues.
Show threadLewisNov 15, 2023
@craftycat @Selena @taylorlorenz It's not hyperbole.
Show threadcraftycatNov 15, 2023
@LewisHarrington @Selena @taylorlorenz provided that we even believe that a medical statement about what illness is worse is possible at all, I find it interesting then that the article itself provides nothing that would make such a comparison possible to begin with. The most common symptoms of long covid include long lasting fatigue, recurring fevers, headaches and neurological issues. I would love to see the scientific comparison between these symptoms in long covid vs cancer patients.
Show threadcraftycatNov 15, 2023
@LewisHarrington @Selena @taylorlorenz I am fully in support of long covid patients getting the medical help they need, I suffered permanent damage from covid myself that took years to diagnose, but this claim specifically has no medical relevance or proof and only make it more difficult to be taken seriously.
Show threadLewisNov 15, 2023

@craftycat @Selena @taylorlorenz I had a terrible headache and spent 3 yrs unable to do anything. I wanted death versus more of the same.
I was shitting blood too.
I nearly died of crohns previously and would have without help. I could not stand for blood loss from the ulceration and shit blood 23 times a day.

You don't know anything of real pain. You should not minimise what you don't know.

Show threadcraftycatNov 15, 2023
@LewisHarrington @Selena @taylorlorenz Crohns disease is not Long Covid and has never been classified as such. I would suggest not jumping into a discussion if all you're going to do is change the subject to fit your argument. Bye now.
Show threadLewisNov 16, 2023

@craftycat @Selena @taylorlorenz
Long covid often is actually an auto immune disease.

The average person has up to 47% more chance of developing auto immune disease post covid.

These can be very serious, terrible death causing diseases.
Also all the vascular problems and heart attacks.

Every infection puts a person closer to a living hell. The medics are awful at diagnosing auto immune problems thus many will live and die without medication.

You are underestimating.

Show threadRae PattersonNov 15, 2023

@Selena @taylorlorenz

He did say "worse than some end-stage cancers," which is definitely true, through I don't know how helpful the comparison is if people are going to use it to discredit his position.

Show threadRobotistryDec 10, 2023

@Selena @taylorlorenz Just like cancer has a range of severity, long covid has a range of severity. At their most severe, long covid patients in the ME/CFS subtype can be in a state like a permanent severe migraine. Any exertion, including screaming or crying in pain and sensory stimuli like like light or sound or touch can trigger intensified pain.

Justification for OP: https://www.eurekalert.org/news-releases/991557

Extreme ME/CFS: https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/severely-affected-patients.html

Long Covid can impact fatigue and quality of life worse than some cancers

Fatigue is the symptom that most significantly impacts the daily lives of long Covid patients, and can affect quality of life more than some cancers, finds a new study led by researchers at UCL and the University of Exeter.

EurekAlert!
Show threadMaggie MaybeNov 15, 2023

@taylorlorenz people have no idea, and from what I understand long Covid is a lot worse and a lot more than just MECFS. But people have no idea what it’s like to be so tired you can’t even stay awake, sleep as long as you want, but then wake up and feel just as tired. And sometimes you can’t sleep as long as you want you’ll just wake up at 4 AM, still just as tired as when you went to sleep, unable to continue to sleep.

The people who are willing to kill their friends and neighbors so they can live their lives will not be able to live their lives. Then what?

oh and if you think the government will take care of you if you lose your job? Lol! Do these people have years pf savings to float them until disability kicks in?

And don’t forget that even if they do come up with a treatment that helps, we don’t have enough human capital stock to make the medication, put it into boxes, get it to the pharmacies, or dispense it to the patients because we’re killing all those people for brunch and shopping.

But honestly, with all the Covid brain damage we are forcing on literally everyone, who will even be smart enough to come up with any kind of treatments?

Show threadJohn LuskNov 15, 2023

@taylorlorenz

They're not in the fedi, but NewsBlur picked their RSS feed right up.

Show threadLewisNov 15, 2023
@taylorlorenz Many of these will be auto immune disease.
Covid triggered my crohns and gave me another auto immune disease.
I recognised the similarity to my first disease and got prednisolone which helped greatly.
I tried to get help for 3 yrs to investigate. Absolute idiocy from the doctors.
My life was over.
Next week I fly to Turkey where I can buy the cortico steroids without a script.
I would have been left to live in terrible pain for the rest of my life.
Show threadPhil ReesNov 15, 2023

@taylorlorenz The article should have linked to the quality of life studies. E.g.

https://news.exeter.ac.uk/research/long-covid-can-impact-fatigue-and-quality-of-life-worse-than-some-cancers/

Long Covid can impact fatigue and quality of life worse than some cancers

Fatigue is the symptom that most significantly impacts the daily lives of long Covid patients, and can affect quality of life more than some cancers, finds a new study led by researchers at UCL and

News
Show threadRobert Riedl Nov 15, 2023
@taylorlorenz if there were only low cost, widely available, easy ways to prevent the infections that cause Long Covid… 🤷‍♂️
Show threadJ.H.NoyesDec 10, 2023

@taylorlorenz
Yeah. Long Covid is pretty shitty. What's going on inside of people that have had Covid but are not longhauling of pretty shitty, too. Might take 10 or 15 years, but it has the scent of an HIV-like all-kill via secondary mechanism about it.

How it's going: https://www.medrxiv.org/content/10.1101/2023.07.27.23293177v1

How it went: https://www.pnas.org/doi/10.1073/pnas.2221652120

Yes they knew when they let it rip (Min 32 to 40): https://videocast.nih.gov/watch=45296

@robotistry

Multimodal Molecular Imaging Reveals Tissue-Based T Cell Activation and Viral RNA Persistence for Up to 2 Years Following COVID-19

The etiologic mechanisms of post-acute medical morbidities and unexplained symptoms (Long COVID) following SARS-CoV-2 infection are incompletely understood. There is growing evidence that viral persistence and immune dysregulation may play a major role. We performed whole-body positron emission tomography (PET) imaging in a cohort of 24 participants at time points ranging from 27 to 910 days following acute SARS-CoV-2 infection using a novel radiopharmaceutical agent, [18F]F-AraG, a highly selective tracer that allows for anatomical quantitation of activated T lymphocytes. Tracer uptake in the post-acute COVID group, which included those with and without Long COVID symptoms, was significantly higher compared to pre-pandemic controls in many anatomical regions, including the brain stem, spinal cord, bone marrow, nasopharyngeal and hilar lymphoid tissue, cardiopulmonary tissues, and gut wall. Although T cell activation tended to be higher in participants imaged closer to the time of the acute illness, tracer uptake was increased in participants imaged up to 2.5 years following SARS-CoV-2 infection. We observed that T cell activation in spinal cord and gut wall was associated with the presence of Long COVID symptoms. In addition, tracer uptake in lung tissue was higher in those with persistent pulmonary symptoms. Notably, increased T cell activation in these tissues was also observed in many individuals without Long COVID. Given the high [18F]F-AraG uptake detected in the gut, we obtained colorectal tissue for in situ hybridization SARS-CoV-2 RNA and immunohistochemical studies in a subset of participants with Long COVID symptoms. We identified cellular SARS-CoV-2 RNA in rectosigmoid lamina propria tissue in all these participants, ranging from 158 to 676 days following initial COVID-19 illness, suggesting that tissue viral persistence could be associated with long-term immunological perturbations. ### Competing Interest Statement MJP reports consulting fees for Gilead Sciences and AstraZeneca, outside the submitted work. TJH reports consulting fees for Roche and Regeneron outside the submitted work. ### Funding Statement PET-imaging and peripheral blood immune testing was supported by a Merck Investigator Studies Program Grant (to TJH). PET-imaging Gut biopsy collection and testing was supported by grants from the PolyBio Research Foundation (to TJH, HV and MJP). This work was also supported by NIH/National Institute of Allergy and Infectious Diseases grants (3R01AI141003-03S1, R01AI158013, K23AI157875, and K24AI145806); the Zuckerberg San Francisco General Hospital Department of Medicine and Division of HIV, Infectious Diseases, and Global Medicine. ### Author Declarations I confirm all relevant ethical guidelines have been followed, and any necessary IRB and/or ethics committee approvals have been obtained. Yes The details of the IRB/oversight body that provided approval or exemption for the research described are given below: This study was approved by the University of California, San Francisco Institutional Review Board. I confirm that all necessary patient/participant consent has been obtained and the appropriate institutional forms have been archived, and that any patient/participant/sample identifiers included were not known to anyone (e.g., hospital staff, patients or participants themselves) outside the research group so cannot be used to identify individuals. Yes I understand that all clinical trials and any other prospective interventional studies must be registered with an ICMJE-approved registry, such as ClinicalTrials.gov. I confirm that any such study reported in the manuscript has been registered and the trial registration ID is provided (note: if posting a prospective study registered retrospectively, please provide a statement in the trial ID field explaining why the study was not registered in advance). Yes I have followed all appropriate research reporting guidelines, such as any relevant EQUATOR Network research reporting checklist(s) and other pertinent material, if applicable. Yes All data produced in the present study are available upon reasonable request to the authors

medRxiv