Discussion - Long COVID

[Emily]

So obesity and prior drinking history are risks. Go figure.

https://nypost.com/2023/01/20/long-c...searchers-say/
Long COVID may make your hangovers much worse, researchers say

By Adriana Diaz

January 20, 2023 6:59pm

Getting a positive COVID-19 test may not only affect the way people taste and smell alcohol — it may also change the way they process it.

Anecdotal data has found that some people have reported a change in how their bodies react to booze after testing positive for the coronavirus.

Rebekah Stein, 30, used to be able to hold her liquor before being diagnosed with COVID in March 2020, she told BuzzFeed News.

Then one night after her mild symptoms went away, she casually stole a sip of her husband’s whiskey, as she had done plenty of times before...

[Emily]

https://onlinelibrary.wiley.com/doi/...002/acn3.51631
Tziastoudi, M., Cholevas, C., Stefanidis, I. and Theoharides, T.C. (2022), Genetics of COVID-19 and myalgic encephalomyelitis/chronic fatigue syndrome: a systematic review. Ann Clin Transl Neurol, 9: 1838-1857. https://doi.org/10.1002/acn3.51631
Abstract

COVID-19 and ME/CFS present with some similar symptoms, especially physical and mental fatigue. In order to understand the basis of these similarities and the possibility of underlying common genetic components, we performed a systematic review of all published genetic association and cohort studies regarding COVID-19 and ME/CFS and extracted the genes along with the genetic variants investigated. We then performed gene ontology and pathway analysis of those genes that gave significant results in the individual studies to yield functional annotations of the studied genes using protein analysis through evolutionary relationships (PANTHER) VERSION 17.0 software. Finally, we identified the common genetic components of these two conditions. Seventy-one studies for COVID-19 and 26 studies for ME/CFS were included in the systematic review in which the expression of 97 genes for COVID-19 and 429 genes for ME/CFS were significantly affected. We found that ACE, HLA-A, HLA-C, HLA-DQA1, HLA-DRB1, and TYK2 are the common genes that gave significant results. The findings of the pathway analysis highlight the contribution of inflammation mediated by chemokine and cytokine signaling pathways, and the T cell activation and Toll receptor signaling pathways. Protein class analysis revealed the contribution of defense/immunity proteins, as well as protein-modifying enzymes. Our results suggest that the pathogenesis of both syndromes could involve some immune dysfunction.

[Emily]

https://fortune.com/well/2022/11/29/...ovid-symptoms/
9 at-home exercises that may help relieve your long COVID symptoms

BY Barbara Brody
November 29, 2022, 6:00 PM UTC

[sharon sanders]

Dr Claire Taylor
@drclairetaylor
1/ Mast Cell Monday. What are ‘mast cells’? They are part of the immune system and constantly looking for trouble! Handy wee things when you need them- they release histamine+ other things to draw other cells to the area. The problem is when they go rogue…
10:20 AM · Nov 14, 2022·Twitter for iPhone
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Dr Claire Taylor
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@drclairetaylor
2/ they can go rogue for no reason and this is called ‘mast cell activation syndrome’ Eg the mast cells are acting like there is a big problem and releasing all these chemicals eg Histamine and prostaglandins that can then cause symptoms in every part of the body.
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Dr Claire Taylor
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5/ the list of symptoms is endless but commonly fast heart rate, rashes, reflux, headaches, fatigue, gastro symptoms. Triggers can be food, temperature, smells, chemicals, exercise, stress or nothing at all. At worst can lead to anaphylaxis (should stress this is rarer).
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Dr Claire Taylor
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6/ how common is it? According to one dr up to 17% of the population. Answer is we don’t really know but it’s associated with #mecfs #LongCovid and other immune medicated diseases
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Dr Claire Taylor
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7/ why hasn’t your Doctor heard of it? It appears in the ICD-10 coding of diseases https://aapc.com/codes/icd-10-codes/D89.4… Yet there are no guidelines and not a huge amount of research. There is an international consensus statement

pubmed.ncbi.nlm.nih.gov
Diagnosis of mast cell activation syndrome: a global "consensus-2" - PubMed
The concept that disease rooted principally in chronic aberrant constitutive and reactive activation of mast cells (MCs), without the gross MC neoplasia in mastocytosis, first emerged in the 1980s,...
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Dr Claire Taylor
@drclairetaylor
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8/ Are there tests? Yes. But any mcas patient will tell you that they are often negative - blood tryptase level -24 urine tests that have to be kept on ICE and degrade quickly.
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Dr Claire Taylor
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9/ is there treatment? Yes! Which is why we need to raise awareness of it as a condition. We have seen a huge increase in #mcas after Covid.
@BethanMyers
has written the best paper on it. I bow to her expertise.

pubmed.ncbi.nlm.nih.gov
Mast cell activation syndrome and the link with long COVID - PubMed
Mast cells are innate immune cells found in connective tissues throughout the body, most prevalent at tissue-environment interfaces. They possess multiple cell-surface receptors which react to...
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Dr Claire Taylor
@drclairetaylor
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10/ treatment can start with most basic H1 and H2 blockers ( eg antihistamines and H2 blockers formerly used mainly for stomach problems). There are then various groups of meds that can be worked up to if things are not settling.
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Dr Claire Taylor
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11/ this study showed that Long-COVID patients had similar severity of numerous MCAS symptoms

ijidonline.com
Mast cell activation symptoms are prevalent in Long-COVID
The COVID-19 pandemic has spread throughout the world, with calamitous outcomes for some of those acutely infected and for those who struggle with Long-COVID (LC), also known as Long-Haul COVID and...
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Dr Claire Taylor
@drclairetaylor
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12/ children also get it. This paper from 2020 questions whether multisystem inflammation is actually severe MCAS https://mastcellaction.org/assets/2021/09/17/53330e05-1552-4b3b-9238-25a39a80ec0b.pdf?v=1…
@LongCovidKids
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Dr Claire Taylor
@drclairetaylor
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13/ is irritable bowel syndrome actually MCAS? This study showed IBS patients had increased mast cells near the nerves.

sciencedirect.com
Activated mast cells in proximity to colonic nerves correlate with abdominal pain in irritable...
Background & Aims: The mechanisms underlying abdominal pain perception in irritable bowel syndrome (IBS) are poorly understood. Intestinal mast cell i…
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Dr Claire Taylor
@drclairetaylor
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14/ MCAS is associated with #MECFS #LongCovid #EhlersDanlos #pots It’s hard to get numbers on how many are affected but from clinical observation it appears to be a lot. So we have a treatable avenue but patients have to actively seek out diagnosis and treatment
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Dr Claire Taylor
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16/ MCAS is different from mastocytosis. In MCAS there are normal cells that rerelease chemicals when they shouldn’t. Mastocytosis is when the body makes too many mast cells.
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Dr Claire Taylor
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17/ I hope this is helpful for patients and #MedTwitter Picture of mast cell ( from https://marekdoyle.com/mast-cell-activation-messenger/…) #NEISvoid

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Dr Claire Taylor
@drclairetaylor

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Haven’t a clue where tweets 3+4 went. That’s what happens when you tweet and parent at the same time

[Emily]

You can skip the intro and go to 22:35 "Questions we will explore about long-haul covid" if you want.

https://www.youtube.com/watch?v=x2Wz8kp5ClU
Long-haul Covid symptoms and Cervical Instability overlap and Vagus Nerve Connection


Caring Medical


98.7K subscribers

401,307 views May 7, 2022

In this nearly 2 hour webinar, Ross Hauser, MD reviews some medical articles on long covid and discusses the overlap of symptoms in patients diagnosed with long covid and those who have cervical instability and vagus nerve degeneration. He begins by sharing a very personal statement and update on Caring Medical Florida.

[Emily]

https://onlinelibrary.wiley.com/doi/...002/jcsm.12931
Sarcopenia as potential biological substrate of long COVID-19 syndrome: prevalence, clinical features, and risk factors


Martone, A. M., Tosato, M., Ciciarello, F., Galluzzo, V., Zazzara, M. B., Pais, C., Savera, G., Calvani, R., Marzetti, E., Robles, M. C., Ramirez, M., Landi, F., and Gemelli Against COVID-19 Post-Acute Care Team (2022) Sarcopenia as potential biological substrate of long COVID-19 syndrome: prevalence, clinical features, and risk factors, Journal of Cachexia, Sarcopenia and Muscle, 13, 1974– 1982, https://doi.org/10.1002/jcsm.12931

Conclusions


Sarcopenia identified according to the EWGSOP2 criteria is high in patients recovered from COVID-19 acute illness, particularly in those who had experienced the worst clinical picture reporting the persistence of fatigue and dyspnoea. Our data suggest that sarcopenia, through the persistence of inflammation, could be the biological substrate of long COVID-19 syndrome. Physical activity, especially if associated with adequate nutrition, seems to be an important protective factor.

[sharon sanders]

Dana Parish

@danaparish
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People are often asking what blood tests they can request to look for Covid vascular damage/ microclotting issues
Quote Tweet

Resia Pretorius
@resiapretorius
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Oct 29
We have shown that molecules secreted by damaged endothelia may be used in interim ‘til we have microclot lab tests.Try pathlabs for VWF, e-selectin and PECAM-1, ALSO alpha2antiplasmin. Most trapped in clots - so soluble fraction = not total concentration @dbkell @doctorasadkhan twitter.com/Sunny_Rae1/sta…

[sharon sanders]

hat tip to @ann_mcnitt for link

Dr Claire Taylor



2h • 17 tweets • 5 min read Bookmark Save as PDF My Authors
Clinical pearls for #LongCovid
1. Find the clots. They are there. If not PE or DVT there are Microclots. 100% of all long Covid patients tested so far have them.
2. If you don’t find PE on CTPA, do a VQ or dual energy CT. You will find the missed clots.
3. Test for Autonomic dysfunction (Covid has a predilection for the ANS).
A 10 minute stand test will suffice. batemanhornecenter.org/wp-content/upl…
4. Then treat said autonomic dysfunction. Don’t tell people it’s ok to have a pulse of 160 doing the dishes. Great info at pots.org
5. Assess for mast cell activation syndrome. Some will says it’s not real. It’s real. Check for dermatographism. Ask about alcohol intolerance, new allergies, new rashes, urticaria. Etc etc
6. You don’t need fancy tests. Just treat it and see response. More info at @MastCellAction
7. Don’t tell people exercise will cure it. It won’t. It didn’t cure #MECFS and it won’t cure long Covid.
74% of patients felt worse with exercise in this study

The Relationship between Physical Activity and Long COVID: A Cross-Sectional StudyThe relationship between Long Covid (LC) symptoms and physical activity (PA) levels are unclear. In this cross-sectional study, we examined this association, and the advice that individuals with LC re…https://www.mdpi.com/1660-4601/19/9/...HsvjzuwzCHgcsM
8. Don’t tell people it is psychological. They have been infected with a level 3 biohazard with unknown repercussions.
9. Don’t tell them to think themselves better, to try harder. They are already trying.
10. Advise them on pacing, which is a way of using what energy is available without crashing.
Familiarise yourself with post-exertional malaise- you are you are going to be seeing a LOT of it over the next few years. See @LongCOVIDPhysio
11. Don’t dismiss chest pain. This shouldn’t even have to be said but unfortunately does.
19% of long Covid patients in the coverscan study had myocarditisAlmost 1 in 5. Treat it. It’s not anxiety.

Multiorgan impairment in low-risk individuals with post-COVID-19 syndrome: a prospective, community-based studyObjective To assess medium-term organ impairment in symptomatic individuals following recovery from acute SARS-CoV-2 infection. Design Baseline findings from a prospective, observational cohort study…https://bmjopen.bmj.com/content/11/3/e048391
12. Try not to catch Covid yourself - you have between 1 in 10 and 1 in 20 chance each infection.
Damage is likely to be cumulative. It affects all the organs as every organ has a blood supply.
13. don’t think because you felt ok after one infection that this will be the case after 5 infections. (We can’t get long term immunity to this virus no matter what anyone on Twitter says).
14. Don’t listen to people who say it’s a cold- it’s not. It’s really really not. Colds don’t cause organ dysfunction and blood clots.
15. Anyone who uses this emoji 💉 over and over has an agenda. We knew the damage Covid caused in January 2020, well before the 💉
16. Protect the children from all of the above. They will be the generation with early heart disease. #CovidIsNotOver #MedTwitter #COVIDIsAirborne #CleanAirClassrooms #dontlookup

[Emily]

https://clinicaltrials.gov/ct2/show/NCT05595369
SARS CoV-2 Viral Persistence Study (PASC) - Study of Long COVID-19 (PASC)
Drug: Paxlovid
Study Description


Brief Summary:
This study is a platform protocol designed to be flexible so that it is suitable for a wide range of settings within health care systems and in community settings where it can be integrated into COVID-19 programs and subsequent treatment plans.
This protocol is a prospective, multi-center, multi-arm, double-blind, randomized, controlled platform trial evaluating antiviral and other therapeutics for use in the treatment of Post-Acute Sequelae of COVID-19 (PASC). The hypothesis is that persistent viral infection (antigenemia) and/or overactive/chronic immune response (inflammation) are underlying contributors to PASC and that antiviral and other applicable therapies may result in viral clearance or decreased inflammation and improvement in PASC symptoms.

[Emily]

https://recoverfromlongcovid.com/?page_id=273

https://twitter.com/BiologistBunk

Pinned Tweet



Bunk the Biologist

@BiologistBunk

PhD in Immunology, Cell Biologist. Two-time covid long hauler. Admin of the FB group Long Covid - recover via Fasting /Autophagy Lactobacillus for Long Covid

Boulder, CO recoverfromlongcovid.com/?p=517Joined November 2020

Bunk the Biologist
@BiologistBunk

Jul 11

I have updated my characterization of Long Covid and my comparison of #vaccineinjured and #LongCovid symptoms. The pattern of symptoms and median severities are nearly identical. I propose that both can be explained by low-level viral infection. https://recoverfromlongcovid.com/?page_id=413

[Emily]

Sharon, the first post promoted vaccines in relation to LC. I think people should know that people are getting LC even when fully vaxxed and boosted and when they have access to Paxlovid. They don't get better in the long run by getting another booster to try to fix it from what I read. If the chair of medicine at UCSF is not relevant, credible and useful sharing his wife's experience, what is?

https://twitter.com/Bob_Wachter/stat...32704391983105

[Emily]

The comments to this video are very interesting. I guess that is all I can say on this thread about that.

[sharon sanders]

I fixed the link to the above video.

[sharon sanders]

I moved two posts off this thread because they were off topic. Vaccines and covid drugs are not the focus on this thread.

Long covid is real and is most probably caused by the immune system's over-reaction to the illness. Apparently this over-reaction can cause tiny micro filament clots that the body does not have the natural process to break down:



@RajeevJayadevan
UK Cardiologist Rae Duncan explains Long COVID beautifully. Abnormal, prolonged immune response damages the inner lining of blood vessels. Micro clots form, of abnormal molecular structure, that the body’s usual mechanisms can’t get rid of. They show up in various organs.

Start at 31:02

[Emily]

Not 45%, though. Not all have anxiety disorders or co-factors.