Discover and read the best of Twitter Threads about #LongCOVID

Most recents (24)

1a\
WEEK 4 Corona
#oversterfte #LongCovid

CBS: 81 ondersterfte
AB:   300 gerelateerde SARS2 †
Pandemie: >98.000†

Fig @falsel_net Image
1b\
Drivers:
• Herinfecties jongeren door BA 2.75*
• Immuunontwijkende XBB recomb.
• Géén reactie Rutte/Kuipers/RIVM
• Risico: hoog (via kinderen)
2a\
@falsel_net over:
• Vergelijk sterfte gerelateerd aan SARS2 met oversterfte CBS.
• CBS schat overledenen zonder SARS2 ~11% te hoog
• Véél meer jongeren én ouderen overleden...
Read 22 tweets
"I just collapsed on the pitch, just collapsed. I woke up, threw up, fell unconscious again and then next thing I know I am in hospital."

Co Antrim footballer J.S. suffered an heart attack at only 19 while training after a Covid reinfection
belfastlive.co.uk/sport/football…
Football striker Jourdan Shearer was rushed to hospital after collapsing during a training session back in December 2021.
"I was completely fine for about two hours during training. We then played this 8 vs 8 training game at the end and I felt something like a stitch."
"I was in hospital for a long time and then out for the next seven to eight months. I wasn't the best, I wasn't even allowed to walk. Then last July [2022] I got the all-clear and was allowed to return to competitive sport." J.S., now 20, said.
Read 6 tweets
Well after a run of ~4 pretty good weeks, the last 5 days have been 💩
Not quite full on relapse, but not well enough to really be functional

Mainly fatigue, dizziness, nausea, blocked nose, dry throat, a weird feeling in my head, tingling everywhere

#postvac #LongCovid #MECFS
My head has tingled (on the skin) which i dont think ive had before

The tingling in my legs has been weird, like all over tingling in my calfs that feel momentarily like my calf is being hugged tightly by tingles
Feeling in head, not quite a headache (except when it has been), not quite head pressure. But kind of is head pressure 🤔

Vascular symptoms are returning like losing blood to my arms when holding my phone lying down
Read 4 tweets
1/🧵Your brain “on COVID”🧠
 
Let’s integrate >20 studies on #LongCOVID neuropathology
 
My 24 y/o patient explained: “I don’t have a future because I can’t think anymore.”
 
Let’s talk:
Autopsy Studies
Viral persistence
Brain Size & Disability
Recovery & Hope

H/T pic 👁️ tw 13 Image
2/ Autopsy Data 🧠

Despite initial improvement from COVID, these (N=27) pts got progressively sicker & died

From their autopsies, the authors found “SARS-Cov-2 infection persisted significantly longer than suggested by standard PCR-negative tests.”

bit.ly/3JrcX3l ImageImage
3/ Brain donation from 1st wave COVID patients (N=9) shows widespread endothelial activation, microclots & platelet aggregation supporting COVID as a vascular disease that yields real brain pathology.

IMAGE👇shows microglial nodules & neuronal injury

bit.ly/3kVCW8M ImageImageImage
Read 28 tweets
1. mpox: human monkeypox virus (hMPXV) doesn't enter the nucleus. Genetic recombination with SARS-CoV-2 in the cytoplasm is possible in co-infected patients, eg people living with uncontrolled HIV-1 (PLH). It's the real threat of Covid Denial or Let 'er RIP policy.

#SIDU 230206 ImageImageImageImage
2. Covid can have the same effect, causing lymphopenia in perhaps 1 in 3 patients (severe #LongCOVID (#LongSARS) can be compared to HIV/AIDS).

Influenza, SARS, HIV, mpox Protein E8L follow shared evolutionary dynamics for electrostatic surface potential & co-receptor switching. ImageImageImageImage
3. Practical implication for clinicians: Test patients presenting with mpox symptoms for all three diseases.

Practical implications for all else: read science.
sciencedirect.com/science/articl…
mdpi.com/1999-4915/15/2…
mdpi.com/1420-3049/27/1…
mdpi.com/1999-4915/14/1…
Read 9 tweets
#GeneticRecombination
This is a phenomenal thread providing explanation of SARS capability for genetic recombination.
Many experienced medical experts never properly understand how SARS reproduction is so different from other viral diseases. Genetic recombination is why. SARS reproduction occur in the cytoplasm without a template.
Virologists just stopped reading because what I just stated violates every principle of virology. SARS reproduction is flawed and should fail without a template, but instead, this failure provides increased mutational ability.
Read 8 tweets
Science is always evolving. But as regards Covid and #LongCovid we already had exensive evidence of pathophysiology and severe outcomes in 2020—1. It's in the scientific literature and also settled thanks to the lived experience of patients. There was no room for complacency.
We knew very early in 2020 about the devastating, multidimensional effects of SARS-CoV-2 infection, like in this @ScienceMagazine piece: how covid kills, a rampage through the body, published on 24 April 2020. There are many early publications like this

science.org/doi/10.1126/sc…
Early enough in 2020, Covid survivors, including those not hospitalized, started to raise awareness online and via traditional media about suffering from prolonged covid symptoms. This afforded the recognition of #LongCovid. We're still in early 2020

sciencedirect.com/science/articl…
Read 6 tweets
Hi everyone!

I am very excited to announce that I have finally completed a massive #ME/CFS & #LongCOVID treatment survey entitled "TREAT ME"‼️🎉🤩

If enough people respond thoughtfully, I’m confident we may push research in the field forward!🏇
🧵1/3

surveymonkey.com/r/TREATMEANDLC
TREAT ME covers 150+ medications & supplements. Treatments were selected based on published trials, case reports, other relevant studies, results of earlier surveys I’ve written, direct patient accounts (incl lots of feedback from many of YOU🥰), and my own pharmacist intuition.
The survey has been granted IRB exemption.👍

Furthermore, @OpenMedF will be reviewing a summary of the survey results as they gather info for prospective research studies🤩😍

PLEASE join this effort to investigate #ME & #LongCOVID treatments!
Read 6 tweets
To those intent on psychologising #LongCovid & #MECFS because ‘there is no biomarker’- let me tell you something as a senior Dr. Many diseases don’t have biomarkers & diagnosis is clinical. Take asthma for example. Symptoms vary between patients. 1/n
Many patients have abnormal exhaled nitric oxide (FeNO) & histamine challenge tests- some don’t. Yet if the patient’s symptoms & signs fit with asthma, we have no hesitation in making the diagnosis. 2/n
There is the well-known example of multiple sclerosis. Many deemed it psychogenic because there was no lab or radiology test that was diagnostic. Until of course the MR scan was invented. 3/n
Read 8 tweets
Immungeschwächte Patienten haben weiterhin ein erhöhtes Risiko, an #COVID19 zu sterben

Eine neue britische Studie hat bestätigt, dass Menschen mit geschwächtem Immunsystem bei einem Krankenhausaufenthalt mit #Covid_19 ein höheres Sterberisiko haben…

#Coronavirus #SARSCoV2
als Patienten mit normalen Immunsystem. Anhand von Daten aus der weltweit größten Studie über Krankenhauspatienten mit der Krankheit wollte ein Team von Forschern der Universität Liverpool, der Universität Edinburgh, des Imperial College London und der Universität Birmingham
herausfinden, ob immungeschwächte Patienten ein höheres Risiko haben, im Krankenhaus zu sterben, und wie sich dieses Risiko im Laufe der Pandemie verändert. Für die Studie wurden die Daten von mehr als 150 000 erwachsenen Patienten aus dem Vereinigten Königreich analysiert, die
Read 8 tweets
🧵We often refer our patients for "neuropsychological" testing but what exactly is it, do you need it, and how does it add value? A thread. 1/10 @CIBScenter
Neuropsychological testing - also known as cognitive testing - aims to provide a comprehensive look at key areas of your cognitive functioning - aspects of your memory, attention, processing speed, executive functioning and more. It is a "deep dive." 2/10
Neuropsychological testing contrasts with cognitive screening (CS). Often 5 or 10 or so minutes in length. CS has a valuable place and a role to play but it provides a brief glimpse, has limitations especially in mild cases, and is not diagnostic. @CIBScenter 3/10
Read 9 tweets
#LongCovid comes with a rich palette of biomarkers i.e. measurable biological indicators of disease. Not everyone has necessarily the same, especially on simple tests, and not everyone has access to very sophisticated imaging. But the abnormalities are there, and well documented
To learn about biomarkers in #LongCovid, scrolling down the rich literature, and even the patient reports shared on this platform, will suffice. Don't get me wrong. I repeat. Not everyone will come back from the doctor with a positive test. Not everyone has access to top tests
But biological abnormalities in #LongCovid are well documented across the patient population, with variations across individuals. We have abnormal pulmonary tests and imaging after Covid pneumonia and prolonged lung pathology e.g.

bbc.com/news/health-60…
Read 15 tweets
Spiegel
spiegel.de/gesundheit/me-…
🛢
Ich wurde als Schwerstbetroffener #MECFS Patient von Menschen gerettet, die sich nicht weggeduckt haben, weil es keine Routineversorgung für ME/CFS im System gibt, sondern sich für mich als Mensch „zuständig“ gefühlt haben und bereit waren,
1/9
eine in meinem Fall sinnvolle Behandlung für mich zu ermöglichen - gegen immense Hürden!
Ärzt*innen und eine Therapeutin, die mir nicht nur zu rettenden Therapien veholfen haben sondern auch mich und meine Krankheit getragen und ertragen haben, als ich keine Kraft mehr und
2/9
unvorstellbare Symptome hatte.

Auf der Suche nach Therapie, unter Bedingungen für #MECFS Schwerstbetroffene haben wir nur ein Angebot, weit entfernt im Norden gefunden.
Rund 800km wurde ich mit Sedierung nach Schleswig-Holstein gebracht, um eine Immunadsorption machen zu
3/9
Read 13 tweets
🧵We've been leading support groups for #ICU survivors for nearly 10 years (over 2 years with #LongCovid patients). Across literally thousands of patient encounters, what have we learned? I'll unpack these insights in tweets to follow. Thanks for reading them. @CIBScenter 1/10
To begin, the ROI for support groups is enormous- they require minimal expenses, utilize few resources, allow you to touch the lives of sometimes dozens of people at the same time, and contribute to changed lives. An inexpensive way to make a big impact. 2/10
They require competent leaders who understand group processes. You can find such people or you can become one but make sure that for at least one group leader, this is not their "first rodeo." We don't all have to be experts but we owe members that much. 3/10
Read 10 tweets
Hybrid immunity comes at a cost - That aspect was missed from this editorial.
#LongCovid
Early Cardiovascular death.
Economic issues d/t illness, new-onset diabetes etc. & shrinking labour force.
One expert weighs in, Z. Chagla. 🙄

theglobeandmail.com/opinion/editor…
A failure in public health @JustinTrudeau :
"just over half of all Canadians have gotten a first booster and only 24 percent have gotten a second. That’s despite the fact that the National Advisory Council on Immunization recommends boosters six months after the previous dose."
That's nothing to celebrate
@CPHO_Canada @jyduclos @fordnation @SylviaJonesMPP
Less than 43% of Ontario children aged 5-11 have completed a primary series of mRNA vaccinations despite the known risks of diabetes and immune dysregulation - invasive Strep A, severe RSV etc.
Read 9 tweets
Preprint: Correlates of symptomatic remission among individuals with post-COVID-19 condition 🧵

“Conclusions and Relevance
A minority of individuals reported remission of PCC symptoms”

#longcovid #treatlongcovid

medrxiv.org/content/10.110…
Overall, 131/423 (31%) of those who completed a subsequent survey reported no longer being symptomatic. In Cox regression models, male gender, younger age, lesser impact of PCC symptoms at initial visit, and infection when the Omicron strain predominated were all…
statistically significantly associated with greater likelihood of remission; presence of ‘brain fog’ or shortness of breath were associated with lesser likelihood of remission.
Read 4 tweets
#LongCovid treatment update:
As promised to my fellow #NEISVoid folks, here is a full list of my medicines, supplements, medical devices & rehabilitation in my recovery journey.
1. #POTS (Hyperadrenergic) - Ivabradine, Amlodipine, IV Saline (every 7 to 10 days as needed). 1/
2. #MCAS - Desloratadine, Montelukast, Cromolyn Sodium (Cetrizine + Prednisolone for rescue)
3. Rheumatoid Arthritis - Methotrexate, Paracetamol, Diclofenac Cream
4. #asthma - Budesonide/Formeterol, Ipratropium Bromide, Salbutamol (Rescue) 2/
5. GI issues - Pantoprozol, Prucalopride
6. Eyes - Olapatadin & Cromolyn eye drops, Refresh Tears, Refresh Eye Gel
7. Supplements - Calcium, Vitamins C & D, High Potency B Complex
8. Hypermobility - Braces for shoulders, ribs, wrists, elbows, knees & neck as needed 3/
Read 7 tweets
1. Acute COVID led to maximal levels of P-selectin dependent platelet-neutrophil aggregation. There was reduced phosphatidylserine exposure and integrin αIIbβ3 activation. It means less primary aggregation and more leukocyte-mediated thromboinflammatory signalling. @JTHjournal
2. #Microclots are typically positive on staining for P-selectin (also known as CD62P). Selective activation of platelet P-selectin may be a feature of acute COVID. Whether the same feature is found in #longCOVID remains unconfirmed. #TeamClots
3. P-selectin binds to PSGL-1 (P-selectin glycoprotein ligand). It is found on leukocytes eg neutrophils, macrophages and T-cells. PSGL-1 is a mediator of immunothrombosis. In chronic viral infection, PSGL-1 promotes T-cell exhaustion. @fitterhappierAJ cell.com/trends/immunol…
Read 5 tweets
Long-term high-dose immunoglobulin successfully treats Long COVID patients with pulmonary, neurologic, and cardiologic symptoms

#longcovid 🧵

frontiersin.org/articles/10.33…
Introduction: Long COVID is the overarching name for a wide variety of disorders that may follow the diagnosis of acute SARS-COVID-19 infection and persist for weeks to many months. Nearly every organ system may be affected.
Methods: We report nine patients suffering with Long COVID for 101 to 547 days. All exhibited significant perturbations of their immune systems, but only one was known to be immunodeficient prior to the studies directed at evaluating them for possible treatment.
Read 8 tweets
Why might someone not say they have #LongCovid?

- Their doctor said they should have recovered by now
- Their friend laughed at them
- It's fine now they've gone half-time at work
- They think they can't get it because they're vaccinated
- Their spouse doesn't believe in it
Why might someone not say they have #LongCovid?

- They think it's probably just getting old
- They read online that Long Covid is just anxiety
- They think they can't get it because they eat Keto
- You are not going to be able to help anyway
- They don't want to lose their job
I really hope that researchers tackling why so many are retiring early or how long it takes to recover from covid are considering the many reasons someone may not say that they have #LongCovid
Read 3 tweets
#MECFS is such a frustrating illness! I was sick for years an nobody believed I was ill ... it took the pandemic and lots of people getting ill with #LongCovid before doctors would listen. Over the past year, I found things that help me recover, again, nobody listens! /1 🧵 Doing elbow stands
Can you believe that I could do handstands, balancing only on my elbows before I became sick? Well I could! This photo was taken about a year before I became ill, I think I was 43. I was super fit and healthy, until I suddenly I because exhausted ... and wasn't. /2
I have be sick for almost 7 years now. In Janary of 2022, my new years resolution was to be able to walk for 15 minutes, without "crashing". 15 minutes! If I couldn't do that, I didnt' want to be alive anymore. At that point I had tried all kinds of medicines and treatments /3
Read 19 tweets
#Gaslighting #LongCovid #MECFS

Für die, welche die Wissenschaft der chronischen Krankheit verfolgten – und die, die sie selbst erlebt hatten – war das Auftreten von #LongCovid so vorhersehbar wie der Sonnenaufgang der Morgensonne. openmindmag.org/articles/gasli…
Seit mehreren Jahrzehnten haben Wissenschaftler Störungen in den Körpern von Personen mit postinfektiösen Erkrankungen gefunden. Die spezifischen Signalwege sind zu zahlreich, um sie hier umfassend aufzulisten.
Studien zeigen, dass sie eine geschwächte Immunantwort aufgrund niedriger Konzentrationen virusbekämpfender natürlicher Killerzellen und eine verstärkte Entzündung umfassen, die durch erhöhte Konzentrationen von Signalchemikalien, den sogenannten Zytokinen, verursacht wird.
Read 8 tweets
Fast 36 Millionen Amerikaner, die positiv auf #COVID19 getestet wurden, berichten von #LongCovid-Symptomen

Das entspricht 28,8 % derjenigen, die positiv getestet wurden. 36,4 % der Amerikaner, die positiv auf #Covid_19 getestet wurden und mindestens drei Monate lang Symptome…
hatten, an, dass ihre Fähigkeit, alltäglichen Aktivitäten nachzugehen, dadurch eingeschränkt wurde. Einkommensschwächere Amerikaner, die positiv auf COVID-19 getestet wurden, geben mit größerer Wahrscheinlichkeit an, dass ihre Symptome länger andauerten. 41,2 % der COVID-19-
positiven Personen mit einem Jahreseinkommen von weniger als 35.000 Dollar geben an, dass ihre #COVID-Symptome länger andauern, verglichen mit 17,4 % derjenigen, die 200.000 Dollar oder mehr im Jahr verdienen. Der Prozentsatz nimmt mit steigender Einkommensstufe ab.
Read 7 tweets

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