Discover and read the best of Twitter Threads about #TreatLongCovid
Most recents (24)
Covid has been gnawing at my brain since my first infection February 2020.
Over the past 41 months, I have watched helplessly as it ripped apart my brain in various ways leaving me a shell of my old self.
1/25
#LongCovid
#LongCovidBrainDamage
Over the past 41 months, I have watched helplessly as it ripped apart my brain in various ways leaving me a shell of my old self.
1/25
#LongCovid
#LongCovidBrainDamage
Brain damage has progressed rapidly since 1st scans early '21 w 1st lacunar infarct stroke.
From recent scans:
'cystic encephalomacia of superior R parietal lobe & redemonstrated dilated perivascular space in L basal ganglia'
2/25
From recent scans:
'cystic encephalomacia of superior R parietal lobe & redemonstrated dilated perivascular space in L basal ganglia'
2/25
'Volume loss'
'Cystic encephalomalacia'
'Dialated perivascular space in basal ganglia'
'White matter hyperintensities of L peritrigonal region & subcortical frontal gyrus'
'Lesions throughout brain, 20'
3/25
'Cystic encephalomalacia'
'Dialated perivascular space in basal ganglia'
'White matter hyperintensities of L peritrigonal region & subcortical frontal gyrus'
'Lesions throughout brain, 20'
3/25
Sneak peek at our latest #LongCovid preprint about microclot detection using imaging flow cytometry
By Simone Turner, Jaco Laubscher, @resiapretorius & @dbkell
These are 1st results from the instrument YOU funded by donating to @givewithkernls
#TeamClots
1/n
By Simone Turner, Jaco Laubscher, @resiapretorius & @dbkell
These are 1st results from the instrument YOU funded by donating to @givewithkernls
#TeamClots
1/n
Grey columns are using brightfield microscopy; black are using Thioflavin T
See the difference in size between #LongCovid & control microclots
There were statistically significant differences in mean size, number & other variables
More in the paper!
2/n
See the difference in size between #LongCovid & control microclots
There were statistically significant differences in mean size, number & other variables
More in the paper!
2/n
Why is this important?
Because flow cytometry is already accessible in clinical settings, unlike fluorescence microscopy which is mainly a research tool.
Big thanks to @gezmedinger @HarryLeeming @fearnley_k @Geraint6Jones @clarejdaly @loscharlos @ShaneyWright @j_b_kennedy 3/n
Because flow cytometry is already accessible in clinical settings, unlike fluorescence microscopy which is mainly a research tool.
Big thanks to @gezmedinger @HarryLeeming @fearnley_k @Geraint6Jones @clarejdaly @loscharlos @ShaneyWright @j_b_kennedy 3/n
Our preprint about treatment of 91 #LongCovid patients with triple anticoagulant therapy is out! By Dr Jaco Laubscher, @resiapretorius @dbkell @JanPretorius98 & myself...
#ResearchLongCovid
#TreatLongCovid
#MECFS
#TeamClots
#MedTwitter
#MedEd 1/n
#ResearchLongCovid
#TreatLongCovid
#MECFS
#TeamClots
#MedTwitter
#MedEd 1/n
Symptoms by age 3/n
Here's some evidence contradicting the proposal that "hybrid immunity" (the immunity one develops from covid infection plus vaccination) can be "built up in the population" and is "good for future prospects." 🧵
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1/~50
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1/~50
TL;DR:
"Hybrid immunity" may reduce future severe acute covid, but it doesn't greatly reduce transmission, so it produces viral evolution & immune dysfunction (which extend the pandemic) plus other acute & chronic illness, healthcare decline, economic decline, isolation, etc.
2/
"Hybrid immunity" may reduce future severe acute covid, but it doesn't greatly reduce transmission, so it produces viral evolution & immune dysfunction (which extend the pandemic) plus other acute & chronic illness, healthcare decline, economic decline, isolation, etc.
2/
For those who prefer an unrolled view of this thread, please look here:
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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…
“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.
Excellent piece in today’s @BBCRadio4 Woman’s Hour featuring @BinitaKane who discusses #LongCovid
Starts at 19:30
bbc.co.uk/sounds/play/m0…
Starts at 19:30
bbc.co.uk/sounds/play/m0…
Hearing Dr Melissa Heightman’s (clinical lead for post-covid services at UCHL & national speciality advisor with the #LongCovid programme in @NHSEngland) responses solidified my view that we’re not going to get the help we need unless things change
#NotRecovered #treatlongcovid
#NotRecovered #treatlongcovid
“The key goal of the post-covid services is that we bring the right specialists around the person”
“That has been one of the success stories of the pathway”
“The #longcovid clinics are definitely not doing nothing”
- Dr Heightman
Agree?
“That has been one of the success stories of the pathway”
“The #longcovid clinics are definitely not doing nothing”
- Dr Heightman
Agree?
This is why we do what we do...
👇 is by Abi, recently turned 16.
Gaslighting can even come from those closest to you.
"But you look fine"
"I can't understand why you're not better yet"
"How can you be tired, you sleep until midday".
#LongCovidKids #LongCovid #SARSCoV2
/1
👇 is by Abi, recently turned 16.
Gaslighting can even come from those closest to you.
"But you look fine"
"I can't understand why you're not better yet"
"How can you be tired, you sleep until midday".
#LongCovidKids #LongCovid #SARSCoV2
/1
Tomorrow, Anna & I, & some of the @LongCovidKids team will attend a @ScotParl Reception hosted by @ALLIANCEScot to celebrate ours & others work around self management.
Self mngmnt is a valuable tool but it won't cure #LongCovid #LongCovidKids
There is much more work to do.
/2
Self mngmnt is a valuable tool but it won't cure #LongCovid #LongCovidKids
There is much more work to do.
/2
Please share Abi's work. It is beautifully written, took her months to complete and encapsulates the struggle of so many #LongCovidKids in Scotland.
#Listen
#Believe
#Compassion
#Learn
#Understand
#TreatLongCovid
/end
#Listen
#Believe
#Compassion
#Learn
#Understand
#TreatLongCovid
/end
🔴Nous signons cette tribune dans @OuestFrance avec 200 scientifiques/soignants/membres de la société civile et de ~40 assos, collectifs &organisation professionnelles, 🇫🇷 &🌍/12 pays,
pour rétablir la réalité #CovidLong et exhorter @EmmanuelMacron @FrcsBraun à agir🔥
#apresJ20
pour rétablir la réalité #CovidLong et exhorter @EmmanuelMacron @FrcsBraun à agir🔥
#apresJ20
📌🔗Nous remercions tous les cosignataires pour leur soutien, liste complète des 200 signataires à retrouver : apresj20.fr/tribune-signat…
👉Merci aussi à ceux qui ne sont pas sur twitter et à :
@zalaly @PutrinoLab @LBatemanMD @darrenabrown @Sunny_Rae1 @dgurdasani1 @chrischirp
👉Merci aussi à ceux qui ne sont pas sur twitter et à :
@zalaly @PutrinoLab @LBatemanMD @darrenabrown @Sunny_Rae1 @dgurdasani1 @chrischirp
Bei der Diagnose und Behandlung von #LongCovid und #MECFS ist die Psychosomatik unser Fluch und Segen. Es sind oft Psychologen, Psychiaterinnen und Psychosomatiker, die erkennen oder bereits wissen, dass unsere Erkrankung nicht psychosomatisch ist.
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Es sind Pneumologen, Kardiologinnen, Neurologinnen, Internisten, Hausärztinnen, die uns Anpassungsstörung, Depression, Burnout, Neurasthenie oder somatoforme Störung bescheinigen, nachdem sie bei Abklärungen nach Schema X keine somatische Ursache finden konnten.
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2/
Es ist egal, ob jemand resilient und psychisch ein Fels ist, da lässt sich in der Kindheit oder bei Mehrfach-Belastung durch Job & Kinder immer etwas finden. Unspezifische Symptome wie Fatigue, Schlafstörungen und Schmerzen (siehe Katalog Longcovid) sind da ein Fressen.
3/
3/
I don’t understand why every #MECFS & #LongCovid patient presenting with the classic neuro-immune & vascular symptoms, aren’t immediately sent for screening for:
- POTS
- EDS/hEDS
- EBV & HHV reactivation
- Microclots & hyperactivated platelets
- … what else did I miss?
- POTS
- EDS/hEDS
- EBV & HHV reactivation
- Microclots & hyperactivated platelets
- … what else did I miss?
Adding summary from your suggestions:
- Further common co-morbidities:e.g. MCAS
- Further infection-onset disease: e.g. Lyme, Bartonella, tick-borne
- Symptom detail (unlock treatment!): e.g. Chronic Epipharyngitis , Chronic Pharyngotonsillitis
Adding: #MESpine #CCI etc too
- Further common co-morbidities:e.g. MCAS
- Further infection-onset disease: e.g. Lyme, Bartonella, tick-borne
- Symptom detail (unlock treatment!): e.g. Chronic Epipharyngitis , Chronic Pharyngotonsillitis
Adding: #MESpine #CCI etc too
Adding the importance of testing and screening for common dysautonomic, neuro-endocrine and autoimmune diseases, including this excellent list here from @Dysautonomia:
#TreatME #TreatLongCovid #LongCovid
#TreatME #TreatLongCovid #LongCovid
🔴Cette semaine @guardian a fait toute une série d'articles sur le #covidlong (y compris couverture de leur magazine hebdo) montrant bien la grande &nécessaire attention de la presse internationale sur ce risque qui concerne bien tout le monde!A RT largement! @FrcsBraun #apresJ20
🔴"Comment le Covid Long va-t-il évoluer dans les années à venir ? Huit experts se prononcent"
" Et le plus important de tous, ne pas tomber malade en premier lieu."
@zalaly @PutrinoLab
theguardian.com/society/2022/o…
" Et le plus important de tous, ne pas tomber malade en premier lieu."
@zalaly @PutrinoLab
theguardian.com/society/2022/o…
🔴"Dr Anthony Fauci : le Covid Long est une urgence de santé publique "insidieuse""
theguardian.com/society/2022/o…
theguardian.com/society/2022/o…
In einer alten Ausgabe “Annals of Internal Medicine” in der Bibliothek der @ChariteBerlin habe ich ein Heilmittel für meine #EBV-Reaktivierung gefunden.
Da diese eine tragende Rolle bei #MECFS und #LongCovid spielt, könnte es auch anderen helfen.
Thread!
1/
Da diese eine tragende Rolle bei #MECFS und #LongCovid spielt, könnte es auch anderen helfen.
Thread!
1/
@ChariteBerlin Jeffrey A. Goldstein, ehem. Hausarzt und ME/CFS-Behandler aus den USA, schrieb 1983 [1] und 1986 [2, 3, Screenshots unten] in Leserbriefen an zwei Journals über seine Erfolge mit Cimetidin bei chronischen EBV-Infektionen. Er berichtet, dass 29 von 32 Patient*innen 2/
@ChariteBerlin nach zweitägiger Behandlung dauerhaft symptomfrei sind. Er vermutet, dass Cimetidin an den H2-Rezeptoren von regulatorischen T-Zellen (“supressor t cells”) bindet und so deren Überaktivierung entgegenwirkt [3].
Die Wirkung auf Treg-Zellen konnte 1986 im Mausmodell 3/
Die Wirkung auf Treg-Zellen konnte 1986 im Mausmodell 3/
1/ Allowing the unmitigated spread of #SARSCoV2 is actually destroying the economy. 🧵
2/ A report by Household Pulse Survey (HPS), conducted by Census Bureau in America, found 16 million working-aged Americans (18-65 years) currently have #LongCovid.
Of those affected, between 2-4 million, are unable to work due to the severity condition.
Of those affected, between 2-4 million, are unable to work due to the severity condition.
3/ The impact on lost wages alone is estimated to be $170 billion a year (and potentially as high as $230 billion) brookings.edu/research/new-d…
@Phil_Lewis_ For those looking to better themselves now that the ‘pandemic is over’ please take a look at Tollovid. Same 3CLpro inhibitor mechanism Pfizer’s Paxlovid, but natural dietary supplement. Data in acute and LongCOVID $TOMDF
researchgate.net/publication/36…
researchgate.net/publication/36…
“Colin Bennett, 34, has already spent a remarkable $100,000 on untested therapies… the barrage of #LongCovid symptoms that turned the financial analyst & golfer into a de facto old man since he got the virus a year ago.”
“I didn’t care if it killed me.”
sfchronicle.com/bayarea/articl…
“I didn’t care if it killed me.”
sfchronicle.com/bayarea/articl…
“But he only went rogue..after doctors at Stanford, the University of Southern California, three University of Californias and various ERs failed to alleviate his ailments”
“I never had any problems before COVID,” - @econcolin
“I never had any problems before COVID,” - @econcolin
“Anisha Sekar of San Francisco ran ultramarathons before getting COVID 2 years ago. Now 31, she needs a wheelchair to go through the airport.
The tech entrepreneur says there is ‘exactly one’ doctor who has earned her trust because she is open to trying novel but safe treatments”
The tech entrepreneur says there is ‘exactly one’ doctor who has earned her trust because she is open to trying novel but safe treatments”
Einige Behauptungen v.a. von Ärzt:innen zu #LongCovid, die wir richtigstellen möchten mit den Erfahrungen und Beobachtungen aus unserem Netzwerk von über 3000 Betroffenen @LongCovidCH, @LongCovid Kinder @SGME_CH 1/
Ärzt:innen behaupten, die Mehrheit der Betroffenen erhole sich wieder vollständig von #LongCovid. Gemäss @LongCovidCH-Beobachtungen und einer Umfrage von @SantePubliqueFr leiden 30% der Infizierten nach 3 Monaten und 20%, 2/3, nach 18 Monaten unter Symptomen. #NichtGenesen. 2/
Epidemiolog:innen behaupten, Vorerkrankungen, Hospitalisation und höheres Alter erhöhen das Risiko für #LongCovid #MECFS. Über 60% der Betroffenen hatten keinerlei Vorerkrankungen, Betroffene sind durchschnittlich 40 Jahre alt, und über 80% waren nie hospitalisiert. 3/
I'm begging you, please, listen to those of us who have #LongCovid from the 1st wave.
We're sharing experiences & medical traumas to try to help you understand how damaging long term affects of Covid are to help protect you from suffering the same fate.
#TreatLongCovid
1/7
We're sharing experiences & medical traumas to try to help you understand how damaging long term affects of Covid are to help protect you from suffering the same fate.
#TreatLongCovid
1/7
Sharing isn't easy.
Cognitive decline coupled w emotional impact of so much hate & denial we face takes a toll.
We keep shouting into the void hoping our voices will help others understand how absolutely necessary it is to protect yourself & others.
#COVIDisAirborne
2/7
Cognitive decline coupled w emotional impact of so much hate & denial we face takes a toll.
We keep shouting into the void hoping our voices will help others understand how absolutely necessary it is to protect yourself & others.
#COVIDisAirborne
2/7
Many of us have multisystem degeneration & damage & have been disabled by Covid.
We've had to fight for our lives everyday while being dismissed by friends, family, & drs.
Our advocacy is based in our survival & much of hc now is based in what we've learned along the way.
3/7
We've had to fight for our lives everyday while being dismissed by friends, family, & drs.
Our advocacy is based in our survival & much of hc now is based in what we've learned along the way.
3/7
Long Covid is no longer a mystery: Long Covid IS Covid. 👇🏼
We can learn from previous pandemics and emerging evidence.
Autoimmunity and abnormal clotting are likely downstream processes of #viralpersistence - whether that be in the form of intracellular viral reservoirs, viral debris or synthetic vaccine spike.
💥NEW PREPRINT from Harvard: #viralpersistence #LongCovid
Persistent circulating SARS-CoV-2 spike is associated with post-acute COVID-19 sequelae
🧵
medrxiv.org/content/10.110…
Persistent circulating SARS-CoV-2 spike is associated with post-acute COVID-19 sequelae
🧵
medrxiv.org/content/10.110…
2/ Plasma samples were collected from a cohort of 63 individuals previously infected with #SARSCoV2, 37 of whom were diagnosed with #LongCovid (PASC) & 26 recovered.
3/ In the PASC group (n=37) , blood samples were collected multiple times up to 12 months after first positive result.
In those individuals recovered (n=26), blood samples were collected up to 5 months post diagnosis.
In those individuals recovered (n=26), blood samples were collected up to 5 months post diagnosis.
Further evidence of persisting SARS-CoV-2 spike protein in #PASC #LongCovid patients, now if we can just #TreatLongCovid !
@harvardmed
medrxiv.org/content/10.110…
@harvardmed
medrxiv.org/content/10.110…
”In conclusion,
the presence of circulating spike in PASC patients up to 12 months post-diagnosis strongly suggests that SARS-CoV-2 viral reservoirs persist in the body…”
the presence of circulating spike in PASC patients up to 12 months post-diagnosis strongly suggests that SARS-CoV-2 viral reservoirs persist in the body…”
”Additionally,
the detection of spike in a majority of individuals included in our PASC cohort
provides strong support for the use of spike as a biomarker for PASC.”
the detection of spike in a majority of individuals included in our PASC cohort
provides strong support for the use of spike as a biomarker for PASC.”
August 2021
Over the following weeks, I develop a limp and the pain in my hips and lower back creeps in insidiously. I’m now bedbound. My biologics are upped to weekly and I’m diagnosed with Enteropathic Arthiritis. Rheumatology now discharge me.
Over the following weeks, I develop a limp and the pain in my hips and lower back creeps in insidiously. I’m now bedbound. My biologics are upped to weekly and I’m diagnosed with Enteropathic Arthiritis. Rheumatology now discharge me.
I start to develop ptosis (my eye literally closes by itself at certain points of the day) I’m in too much pain to take notice. I’ve developed tinnitus in my right ear. I feel all my senses are heightened and cannot focus at all.
September - November 2021
Exhaustion sets in to a level I’ve never ever experienced I’m sleeping 6hours some days and still sleeping through nights. I cannot wake up and it’s impossible to move. I feel like I’m operating at 5%
Exhaustion sets in to a level I’ve never ever experienced I’m sleeping 6hours some days and still sleeping through nights. I cannot wake up and it’s impossible to move. I feel like I’m operating at 5%
UK patient travels to Germany, starts treatment for #LongCovid. Attends local LC clinic- they note pt is improving on the treatment but refuse to prescribe it because ‘we don’t agree’. No reason given. Arrogance, hubris & medical orthodoxy at its best #TreatLongCovid #TeamClots
@uclh this is you. Not good enough.
Sharing with the express permission of the patient.
It’s 2022 and we are 2.6 years into this nightmare.
Sharing with the express permission of the patient.
It’s 2022 and we are 2.6 years into this nightmare.
The #Longcovid adventure goes on. This week, three of us travelled from Northern Ireland to Germany for Microclot testing. All three of us tested positive for Microclots and hyperactivated platelets.
Drugs to treat based on these blood results sit on the shelves in every pharmacy in Northern Ireland, yet we have to go to Germany to get access to them. Treating microclots may not be curative, but it can help. Doing nothing should not be an option. #treatlongcovid
Horror stories from the #LongCovid rehab!
Max, 27 years old
Symptoms:
Fatigue, PEM, sleep disorders, brain fog ...
Therapy: Swimming and long walks
Result: Bedridden and no longer able to use his smartphone.
#LongCovid #MECFS
Max, 27 years old
Symptoms:
Fatigue, PEM, sleep disorders, brain fog ...
Therapy: Swimming and long walks
Result: Bedridden and no longer able to use his smartphone.
#LongCovid #MECFS
Bettina, 35 years old
Symptoms: Fatigue, PEM, muscle twitching, headache.
Therapy: Walking with weights on her feet
Result: Housbound and unable to care for her kids
#LongCovid #MECFS
Symptoms: Fatigue, PEM, muscle twitching, headache.
Therapy: Walking with weights on her feet
Result: Housbound and unable to care for her kids
#LongCovid #MECFS
Rob, 24 years old
Symptoms: Muscle pain, fatigue, PEM, sleep disturbances
Therapy: Running on a treadmill
Result: Beadbound and unable to communicate via smartphone.
#LongCovid #MECFS
Symptoms: Muscle pain, fatigue, PEM, sleep disturbances
Therapy: Running on a treadmill
Result: Beadbound and unable to communicate via smartphone.
#LongCovid #MECFS
