23 Comments

Timing couldn't be better for this paper and discussion. I am writing an affidavit opposing university mandates and fear and preventing Long Covid is one reason these mandates have not been canned.

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Ask your university why they weren't protecting students from PANDAS (risk following Strep) prior to 2020?

See if they know how many people have Long Covid in the following definable large groups and why it's not 20% considering according to CDC 92% of the population has had Covid now.

NBA - n= 450

(0)

WNBA – n = 168

(1, AD Durr, got it post Vax)

NHL - n = 1100

(1, Brandon Sutter, got it post Vax)

NFL- n=1696

(0)

Congress n= 535

(1, Tim Kaine, got it pre vax)

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Reminds me of this study from Denmark, researchers studied a Facebook group of Covid Long Haulers and were surprised to find 30% hadn't had Covid:

https://jyllands-posten.dk/indland/ECE14608938/studie-af-senfoelger-flere-med-senfoelger-har-ikke-haft-corona/?shareToken=753gikvo1l5jp7m0m4jnkqgf

Or this study from the NYT, where the operator of a Long Covid clinic was surprised that all her patients were white wealthy women and not the minorities she had cared for with Covid in 2020.

https://www.nytimes.com/2022/09/26/opinion/post-covid-care.html

(achived paywall bypass: https://archive.ph/0EQau#selection-551.0-551.436 )

"Still, of the more than 1,200 patients seen at our clinic between April 2021 and April 2022, nearly 80 percent were white and just over 70 percent were female. In contrast, it seemed those that we cared for in the hospital, particularly in the first pandemic wave, were disproportionately Black and Hispanic men. “Looking at the data, we know we’re not seeing the patients who bore the brunt of Covid hospitalizations,” Dr. Gay told me."

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At the risk of sounding insensitive, I never bought the long COVID story. All that was required for a diagnosis was having had COVID and ...fill in the blanks ...later. This is not how medical diagnoses are made. My sense of smell suffered substantially for several months. I guess I had long COVID. I read that universities are setting up long COVID treatment centers. I suppose anyone with any ailment and history of COVID is welcome, although there is a requirement to have posted at least once in a long COVID support group chat.

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Imagine counting vaccine injuries using the same methodology as diagnosing Long Covid. Suddenly they become concerned with study design, confounders, and arguing you can't trust a survey asking leading questions on 12 random symptoms 6 months after the event.

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"Long Covid" sounds to me very much like fibromyalgia, which is a legitimate (and equally mysterious) syndrome that causes a great deal of misery in its victims, but has nothing to do with Covid.

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Every infection - viral, bacterial, fungal - has a small but nonzero chance of triggering some long term symptoms (length, severity - random).

Post viral syndrome, ME, Chronic Fatigue Syndrome, etc, are real, and not well understood. For decades the medical establishment largely dismissed these conditions as somatic - medical historian Edward Shorter wrote a compelling book "From Paralysis to Fatigue" in the late 90's arguing this point.

It's a disservice to these people who truly suffer from pos-infection syndrome to over inflate the numbers, which is what the CDC and their PR arm, the MSM have done the last 3 years - and it all traces back to a Pulse Survey with a 4% response rate.

Anyone terrified their child will get Long Covid but wasn't worried about PANDAS from Strep pre-2020 would be better off getting therapy than a supply of n95s

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So what is your opinion of Lyme disease then, for which no definitive tests exist to diagnose and which causes a wide variety of symptoms? All in the patients' heads? Do you presume to think medical science understands the body 100%,?

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It might be very similar. You can read this article to learn more: https://disinformationchronicle.substack.com/p/long-before-suspicions-arose-about (might be pay walled).

I don't think modern profit-driven medical science understands very much of what they think they understand. Syndromes such as fibromyalgia and Lyme disease are not easily monetized in the traditional way, so they are widely dismissed, as you just suggested, as being "all in the patients' heads." Even if they really are "all in the patients' heads," they are still causing harm.

Since Long Covid obviously has little to do with Covid itself, approaching it with an open mind and examining aspects it has in common with fibromyalgia might be more fruitful than, for example, associating it with a respiratory infection and treating it with dangerous mRNA "vaccines." But if you do that you miss out on the shower of sweet, sweet coronabucks available to anyone working with Covid or Covid patients.

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I don’t have an “opinion”, I apply scientific knowledge. Lyme disease has specific symptoms, requires exposure in endemic areas and has confirmatory immunoassays. It can be debilitating and unlike long COVID, it has been an established medical condition for decades.

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Scientific knowledge has limits, and I think we should make a clear distinction between "we don't know" and "this doesn't exist". I have ME/CFS, which also has no definitive bio-markers other than the fact that I am positive for Epstein-Barr antibodies. Would you deny my disease exists as well?

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No. I don’t deny that people who had COVID experience prolonged symptoms. Any diagnosis in medicine is based on specific criteria that allow us to give it a name. While it can be based on scientific evidence, as in your case a diagnosis can be based on observations without formal confirmatory tests. These are often called syndromes. I hope you are doing well.

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I am disabled and about as active as a 100 year-old man at the age of 38, but otherwise coping, thank you for your concern.

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founding
Mar 31, 2023·edited Apr 1, 2023

Those of you who follow this will appreciate these other supportive articles:

https://doi.org/10.1016/j.lanepe.2022.100554 Shows no correlation between long covid and much of anything other than depression

https://doi.org/10.1001/jamanetworkopen.2022.44486 Shows the primary correlate to "long covid" was whether you thought you had covid or not -- but NOT whether you actually HAD covid.

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Penetrating stuff Vinay, penetrating.

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If this was a masking study and it had concluded that masks were effective at preventing Covid transmission, Vinay would have dismissed it as too small to derive any conclusions from, but since it confirms Vinay's biases on long Covid, he labels it "Bombshell." I once held your opinions in high regard Vinay, but this hypocrisy and blatant confirmation bias leave me deeply disappointed.

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Yeah I think you are burying signal with noise in this paper. Why, if you were going to look at making conclusions about long covid, would you not recruit patients who are suffering from it? It is entirely possible this study has, by random chance, not included enough patients suffering from actual long covid.

Yes, the media has probably over-hyped long Covid, but that doesn't mean it is all in the patients' heads, as you are disingenuously suggesting here. If anyone wants to see what severe long covid looks like check out this video from Physics Girl on Youtube. She was a young fit health woman got Covid, progressively got worse after the infection cleared, and now months later suffers from extreme fatigue, sensitivity to light and sound, and is completely bed bound. I challenge anyone who thinks long Covid isn't real, to watch this video and say so afterwards.

These symptoms are consistent with other post-viral syndromes, such as ME/CFS, and though rare, should not be disregarded or dismissed. Shame on you Vinay for being such a fundamentalist on this issue.

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Ranks long covid right up there with hypoglycemia, chronic fatigue syndrome and fibromyalgia as diseases that often times were attributed to patients when there was no answer to their symptoms. Instead we gave them a label that they carry with them for years to come. The younger generation has already been dealing with increased depression and anxiety for many reasons too long to expound on here but when Long Covid is added on it is doing more harm than good.

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I personally suffer from CFS and find your callous disregard of patients who are suffering extremely ignorant. I was once a health young man, rode my bicycle everyday, no medical history. Now I am mostly confined to my apartment, I use a power wheelchair to check my fucking MAIL. I have seen 4 doctors, and one psychiatrist, all agree that I have CFS, psychiatrist found nothing abnormal. You think this is a label I want? You think I am just depressed or anxious? I am fucking ANGRY at having my life stolen from me and the people telling me it is all in my head.

Call me sometime, take a look at my life, I will show you all my medical records, I will show you how I get by day to day. Until then, have some fucking sympathy and understanding for people who are suffering from things we do not understand.

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They left out a few important likely correlates. Measures of stringency factors of the *response* to Covid... of lockdowns and school and business shutdowns and mask mandates and travel restrictions.

Although this was just two counties in Norway, so I would not expect there to be much variation in stringency policies in such a small geographical area.

Which raises an interesting question in my mind about studies which want to look at variations in health across geographies around the world... while you would get much variation in social behavior and responses to events like the pandemic, you would also have more variation in the capabilities of medical and scientific communities in place to study events across broad areas which would impact the range of features which could be studied across geographies. (Compared to the 78 here, for example.)

https://ourworldindata.org/policy-responses-covid

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One cherry picked Norwegian study, presented by one doctor, should not outweigh what the American Academy of Pediatrics has to say on this matter. Before telling people with preformed opinions what they may want a doctor to validate, you would be wise to review the AAP website and all the references listed below. Especially if you are not a pediatrician. I’ve seen a lot of pediatric problems in my patient population resulting from Covid (acute and post infection):

https://www.aap.org/en/pages/2019-novel-coronavirus-covid-19-infections/clinical-guidance/post-covid-19-conditions-in-children-and-adolescents/

Key paragraphs:

“What are some of the ongoing or residual symptoms known to occur after a SARS-CoV-2 infection in children or adolescents as a part of PASC/long COVID and how might they be evaluated and managed?

Respiratory. Because the lungs are the most commonly affected organ for patients with SARS-CoV-2 infection, persistent respiratory signs and symptoms following acute COVID-19 are not uncommon, although are notably less common in pediatric patients compared with adults. The symptoms include chest pain, cough, and dyspnea. The time to improvement depends on the premorbid condition and the severity of the illness. Some of these symptoms can last for 3 months or longer. Follow-up chest imaging is needed for persistent respiratory symptoms or patients who had pulmonary abnormality identified during the acute infection. Children 6 years or older who have persistent symptoms should receive pulmonary function testing. For any patient with persistent exercise-induced dyspnea after initial cardiopulmonary evaluation, including evaluation for thromboembolic disease and heart disease, cardiopulmonary exercise testing can be performed to assess for deconditioning or pulmonary/cardiac limitation under stress.

Cardiac. One of the most concerning aspects of SARS-CoV-2 infection is the potential risk for cardiac involvement, which can be part of the initial disease presentation (including MIS-C), observed as a sequela of the disease or, much less commonly, as a potential risk following the mRNA COVID-19 vaccines.

Myocarditis can develop after COVID-19 infection with presenting signs or symptoms that include chest pain, shortness of breath, arrhythmias, and fatigue. In more severe cases, myocarditis can lead to heart failure, myocardial infarction, stroke, or sudden cardiac arrest. Although the etiology of myocardial involvement is unclear, it appears to be related to either the virus itself or potentially the host immune response to the virus. Typically, myocarditis occurs in the acute or subacute period after initial SARS-CoV-2 infection. Myocarditis is much more common, and the risks to the heart are potentially much more severe, with SARS-CoV-2 infection than with COVID-19 vaccination.

Anosmia and/or Ageusia. COVID-19 can result in changes to smell and taste, particularly in adolescents. As many as 1 out of 4 individuals 10 to 19 years of age develop anosmia. Beyond the ability to detect dangerous odors, reduction or loss of the sense of smell (anosmia) or taste (ageusia) or abnormal sense of smell/taste (parosmia) can affect the nutritional status, mood, and quality of life in children and adolescents. Symptom report can be challenging in very young children, but reduced oral intake, changes in feeding behaviors, or gagging with/avoidance of previously well-tolerated food could indicate changes in smell or taste resulting from COVID-19. Persistent anosmia may warrant further evaluation, nutrition optimization, and olfactory testing, and olfactory training should be considered, the supplies for which can be obtained over the counter by families.

Neurodevelopmental. An age-specific history and evaluation for neurodevelopmental impairment is recommended to assess any changes or delays in cognitive, language, academic, motor, or mood/behavioral domains.15 Acute COVID-19 can result in neuroinflammatory disorders (eg, stroke, encephalitis). Significant injury will result in readily apparent motor, cognitive, and/or language deficits (eg, right hemiplegia and aphasia following left middle carotid artery infarct). However, more subtle neurodevelopmental sequelae that still impact optimal daily function are also possible. Persistent signs or symptoms require referral to either a neurodevelopmental neurologist, developmental and behavioral pediatrician, neuropsychologist, speech language pathologist, psychologist, and/or physical or occupational therapists.

Cognitive Fogginess or Fatigue. “Brain fog” (a generic term that refers to unclear or “fuzzy” thinking, inattention, difficulty with concentration or memory) is a frequent neurologic complaint in adults following SARS-CoV-2 infection. School aged-children and adolescents may also complain about neurocognitive changes following SARS-CoV-2 infection as compared with baseline function. These changes can manifest as inattentiveness, seeming to be more forgetful to a parent, slower in reading or processing, requiring more repetition in learning, and less endurance and/or requiring more breaks when reading or performing other cognitive tasks. It is critical to treat any behaviors that may potentially impact cognitive functioning, including but not limited to getting adequate nighttime sleep, maintaining a consistent sleep/wake schedule with daily activities, avoiding alcohol and drugs, or addressing stressors. For cognitive complaints that persist and result in functional impairment, a targeted neuropsychological evaluation can identify the basis for these signs or symptoms and guide the development of an appropriate, often multidisciplinary, treatment plan. School accommodations, such as a 504 plan, should also be discussed.

Physical Fatigue/Poor Endurance. Following SARS-CoV-2 infection, children and adolescents may complain of easy fatigability, decreased endurance and postexertional malaise or worsening of symptoms. Cardiac evaluation should be performed for patients with significant fatigue who also demonstrate any “red flag” cardiac symptoms, such as syncope, radiating chest pain, or chest pain with exertion, prior to return to any exercise. Encouraging a consistent daily schedule is helpful. An individualized, goal-driven, gradual increase in physical activity, as tolerated, may be beneficial; however, a subset of patients with post-COVID-19 experience significant postexertional exacerbation of their fatigue and other symptoms after a day of activity while they are “feeling good,” resulting in a “push and crash” cycle, which can slow down their overall trajectory of improvement. Traditional reconditioning protocols can be detrimental and mentally and emotionally aggravating for this population.16 For these patients, a return to physical activity should be closely monitored by a pediatrician or physical therapist with specialized training or knowledge of postexertional malaise, which differs from a traditional physical therapy reconditioning approach.17 Existing protocols for this type of recovery (such as the Levine protocol) exist for patients with dysautonomia (and postural orthostatic tachycardia syndrome [POTS]) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and are available on the internet.

Headache. Headache is a common symptom during and following SARS-CoV-2 infection. The history, evaluation, and management are the same as any child presenting with headache—evaluating for “red flag” characteristics (eg. focal or side-locked headache, vomiting that is persistent or worsening, focal neurologic symptoms, etc), associated neurologic findings, and other possible causes of headache. In addition to the potential underlying pathophysiologic mechanisms behind long COVID that remain under investigation, post-COVID-19 headache may be related to situational factors such as change in routine, medication overuse, changes in sleep hygiene, poor hydration and/or nutrition, lack of aerobic exercise, and other stressors. Management of headaches during recovery from infection is similar to other postviral syndromes or postconcussive headaches. Lifestyle factors are typically addressed first; however, if headache symptoms are severe enough to impede recovery, preventive medication may need to be initiated.

Mental Health/Behavioral Health Sequelae. Pediatricians should be aware of the impact of stress and adjustment disorders when diagnosing and managing new symptoms in children who have experienced SARS-CoV-2 infection and/or COVID-19 disease. Following SARS-CoV-2 infection, mental health sequelae are very common and likely multifactorial. The AAP has published interim guidance on integrating and supporting the emotional and behavioral health needs of families affected during the COVID-19 pandemic.”

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And the references cited by AAP:

References

Stephenson T, Allin B, Nugawela M, et al. Long COVID (post-COVID-19 condition) in children: a modified Delphi process. BMJ Arch Dis Child. 2022;107(7):674-680

Lopez Leon S, Wegman-Ostrosky T, Ayuzo del Valle N, et al. Long COVID in children and adolescents: a systemic review and meta-analyses. Sci Rep. 2022;12(1):9950

Funk A, Kupperman N, Florin T, et al. Post-COVID-19 conditions among children 90 days after SARS-CoV-2 infection. JAMA Netw Open. 2022;5(7):e2223253

Rao S, Lee G, Razzaghi H, et al. Clinical features and burden of post-acute sequelae of SARS-CoV-2 infection in children and adolescents: an exploratory EHR-based cohort study from the RECOVER program. MedRxiv. Preprint May 25 2022. 2022.05.24.22275544

Kompaniyets L, Bull-Otterson L, Boehmer TK, et al. Post–COVID-19 Symptoms and Conditions Among Children and Adolescents — United States, March 1, 2020–January 31, 2022. MMWR Morb Mortal Wkly Rep 2022;71:993–999. DOI: http://dx.doi.org/10.15585/mmwr.mm7131a3.

Kompaniyets L, Bull-Otterson L, Boehmer TK, et al. Post–COVID-19 symptoms and conditions among children and adolescents—United States, March 1, 2020–January 31, 2022. MMWR Morb Mortal Wkly Rep. 2022;71(31):993–999

Buonsenso D, Munbilt D, De Rose C, et al. Preliminary evidence on long COVID in children. Acta Pediatr. 2021;110(7):2208-2211

Buonsenso D, Pujol F, Munblit D, et al. Clinical characteristics, activity levels and mental health problems in children with long coronavirus disease: a survey of 510 children. Future Microbiol. 2022;17(8):577-588

Lopez-Leon S, Wegman-Ostrosky T, Ayuzo del Valle N, et al. Long COVID in children and adolescents: a systemic review and meta-analyses. Sci Rep. 2022;12:9950

Morrow A, Malone L, Kokorelis C, et al. Long-term COVID 19 sequelae in adolescents: the overlap with orthostatic intolerance and ME/CFS. Curr Pediatr Rep. 2022;10(2):31-44

Stephenson T, Pinto Pereira S, Shafran R, et al. Physical and mental health 3 months after SARS-CoV-2 infection (long COVID) among adolescents in England (CLoCk): a national matched cohort study. Lancet Child Adolesc Health. 2022;6(4):230-239

Pretorius E, Vlok M, Venter C, et al. Persistent clotting protein pathology in long COVID/post-acute sequelae of COVID-19 (PASC) is accompanied by increased levels of antiplasmin. Cardiovasc Diabetol. 2021;20(1):172

Fogarty H, Townsend L, Morrin H, et al. Persistent endotheliopathy in the pathogenesis of long COVID syndrome. J Thromb Haemost. 2021;19(10):2546-2553

Centers for Disease Control and Prevention. Evaluating and caring for patients with post-COVID conditions: interim guidance. Updated Jun 14, 2021. Available at: https://www.cdc.gov/coronavirus/2019-ncov/hcp/clinical-care/post-covid-clinical-eval.html

Singer TG, Evankovich KD, Fisher K, Demmler-Harrison GJ, Risen SR. Coronavirus infections in the central nervous system of children: a scoping review making the case for long-term neurodevelopmental surveillance. Pediatr Neurol. 2021;117:47-63

Herrera JE, Niehaus WN, Whiteson J, et al. Multidisciplinary collaborative consensus guidance statement on the assessment and treatment of fatigue in postacute sequelae of SARS-CoV-2 infection (PASC) patients [Erratum in: PM R. 2022 Jan;14(1):164]. PM R. 2021;13(9):1027-1043

World Physiotherapy. World Physiotherapy Response to COVID-19 Briefing Paper 9. Safe rehabilitation approaches for people living with Long COVID: physical activity and exercise. London, UK: World Physiotherapy; 2021. Available at: https://world.physio/sites/default/files/2021-06/Briefing-Paper-9-Long-Covid-FINAL.pdf

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