Discover and read the best of Twitter Threads about #treatlongcovid

Most recents (24)

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.
Read 5 tweets
💥NEW PREPRINT from Harvard: #viralpersistence #LongCovid

Persistent circulating SARS-CoV-2 spike is associated with post-acute COVID-19 sequelae

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.
Read 14 tweets
Further evidence of persisting SARS-CoV-2 spike protein in #PASC #LongCovid patients, now if we can just #TreatLongCovid !
”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 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.”
Read 14 tweets
1/🧵 ⭐️ The role of platelets in #COVID19. ⭐️ An early research paper from 2020 eloquently showed the role of platelets in both severe AND non-severe Covid. You might have heard of the platelets in connection with Covid and #LongCovid but what are they?
2/ Platelets are tiny cells in the blood and when inactive look like plates, hence the name. They circulate in the blood looking for damaged blood vessels 🩸 When they find them they bind together to make a blood clot and stop the bleeding. A bit like glue for your body. Smart!
3/ the damaged blood vessel actually sends out a signal, the platelets come flying along to the rescue and become ‘activated’ by growing ‘tentacles’ to attach to the blood vessel. Drawing of a broken blood vessel with activated platelets pl
Read 23 tweets
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.
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%
Read 16 tweets
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.
Read 4 tweets
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
Read 3 tweets
Horror stories from the #LongCovid rehab!

Max, 27 years old

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
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
Read 4 tweets
It has been an honour to walk alongside my friend & colleague of 21 years @BinitaKane & her daughter Jasmin on their courageous & inspiring journey. #LongCovid in adults children is real & serious. There are treatments available- sadly only for a fortunate few #TeamClots 1/n
(Everything I say is with the express permission of @BinitaKane). Jasmin is not the only child with #LongCovid who has been shown to have microclots & hyperactivated platelets. They are a consistent finding in kids & adults who have travelled for treatment to Germany & SA 2/n
Globally 100m are affected by this vile illness. In the U.K. alone this figure is estimated to be 1.8m, with 2/3rds reporting an adverse impact on their daily activities. 1% of primary & 2.7% of secondary school children fulfilled the criteria for #LongCovidKids 3/n
Read 17 tweets
"Pooled mean prevalence results for any experience of PACS (Long Covid) extracted from nine systematic reviews, ranged from 51%–80%".

Yes. Read that again. 51%–80% of infections develop Long Covid. /1.…
"Pooled mean prevalence results for specific PACS [Long Covid] symptoms were extracted, when available, from 32 systematic reviews".

Yes. Read that again. Extracted from 32 systematic reviews. /2.
"Symptoms and prevalence results varied widely across reviews, however some of the most commonly reported symptoms included fatigue; shortness of breath; anxiety; depression; sleep disorder; cognitive and memory impairments; and negative impacts on quality of life (QoL)". /3.
Read 9 tweets
A positive step forward from the @WhiteHouse and the Biden Administration on addressing #LongCovid. A formal statement is out on 5 April 2022.
I am grateful to the advocates and researchers, including the patient-researchers, who made this possible 💙 🧵…
I hope this roadmap to study and treat #LongCovid will be highly productive. I hope research will help people suffering from Long Covid to get their lives back. I hope research will be focused on treatment and care, in addition to simply quantifying the disease
I hope any cure, or treatment, or new knowledge, gained from the work envisioned in the roadmap, will be deployed to help marginalised communities, in addition to those with access to high-quality healthcare.

#LongCovid #TreatLongCovid
Read 4 tweets
Long covid has ruined my life. I was 21 when i got ill,now i'm 23. I was a sport science major and i loved powerlifting and bodybuilding(still do). I had a mild initial case. Then i kept getting worse. I am afraid i will never live again and i'm losing my youth day by day./
I simply can't sustain any activity for more than minutes without extreme fatigue that floors me,sometimes literally. My cognitive ability is diminished. No one knows why. There is no help. I am mostly trapped in my bed. My family is devastated. I don't know if i'll recover./
I already lost almost 2 years of my life. Please let's #researchlongcovid & #treatlongcovid so I and millions of others can find ourselves again. I promise we'll pay you back. It could happen to anyone,more people will get sick and we are not prepared. Please don't leave us.
Read 6 tweets
Two years ago I was putting on scrubs ready for my first shift in a Covid Admissions Ward. I was eager to help however I could. Little did I know within five weeks I would become unwell, leading to a debilitating chronic illness which has no cure. 1/ Image
It has been an extremely high price to pay. And yet still my colleagues are sent to work in the same environment with only surgical masks and plastic aprons. How many more will suffer due to covid? Why have we not learned and adapted? This virus is airborne! 2/
Now all I can do is watch by the sidelines. As cases rise, please do all you can to avoid infection. Wear a mask, ventilate a room, test and isolate if you are unwell. 3/
Read 4 tweets
On my 2 year Covid anniversary, a thread about my experience with #LongCovid and what I've learned about post-viral illnesses like #MECFS. This is me just before I caught Covid 3/20. I'd just hiked 10 miles and was having a blast. I was celebrating publishing my 3rd book. 1/ A healthy woman in her mid 40s smiles at the camera inside a
At the time I was in great shape, hiking and running regularly, working on my next book, being a very active mom, contemplating going back to do some university teaching. About a month after that photos was taken, I thought I had allergies. I felt a little tired. 2/
I knew Covid was coming but, as far as I knew, it wasn't really in the states yet. But then, a week later, I had trouble breathing and my doctor confirmed that I had Covid. I was one of the very first cases in the US. Yay me! 3/
Read 22 tweets
A few mths before getting #LongCovid in Nov 20 I was a frontline NHS respiratory consultant; 6am gym goer; couldn’t sit still, always travelling the world with my wife & 2 gorgeous children. Sep 21- bedbound, gastroparesis, complete sound & light intolerance, bladder incontinence ImageImage
post-viral urticaria that made me suicidal, pericarditis, angina, cognitive impairment, crippling #POTS resistant to all medication, renal impairment, impaired glucose tolerance, intolerant of most foods. Was waiting for life to end. Got v little help from @NHSEngland 2/n
Have spent over £35,000 on supplements, private specialists & experimental treatment in Germany. I am better but still housebound, 50% bedbound, with work or family life a distant dream. Yet I am one of the lucky ones- had the resources to give myself a fighting chance 3/n
Read 9 tweets
Bar chart of #LongCovid symptom duration
Estimated number of people living with LC symptoms (1000s) Image
Read 8 tweets
My personal experience of Long Covid and thoughts on the governments plan to ‘live with COVID’

Key messages: 🧵…
The governments strategy to ‘live with COVID’ is a strategy of denial. Scrapping of protections (free lateral flow, masks, all but ending tracing, mandatory isolation) will allow for the unmitigated spread of COVID which is both dangerous and irresponsible.
Not only do government plans fail to follow the science, they also fail to follow the money.
Read 10 tweets
10 #LongCovid-Mythen:
🔹nur Fatigue
🔹keine Kinder
🔹trifft unfitte mit Vorerkrankungen
🔹andauernde Akut-Symptome
🔹lässt sich behandeln, heilen
🔹Mehrheit der Betroffenen genesen
1. #LongCovid ist nicht psychosomatisch. Es handelt sich um durch eine Virusinfektion ausgelöste Entzündungen, Durchblutungsstörungen, Autoimmunreaktionen, systemische Funktionsstörungen in Zellen, Geweben, Organen. Psychotherapie & Antidepressiva können #LongCovid nicht heilen.
2. #LongCovid ist keine #Dekonditionierung (wie bei post-akuten Verläufen). Kraftverlust, Muskelschwund & Schwäche sind Folgen der systemischen Funktionsstörungen. #Physiotherapie mit Belastungssteigerung kann #LongCovid-Symptome selten verbessern & führt oft zu Verschlimmerung.
Read 11 tweets
Had no literal idea this “follow up interview” was gonna be live TV, but tried to remind @CBSMornings viewers it’s been 2 years & there’s still no warning about #LongCovid disabling 10-30% of all infected folks ~ and it’s 💯 critical we #CountLongCovid & #TreatLongCovid
When I open my zoom link and saw people talking about Afghanistan and Ukraine I was like is going on lol and then they I hear “you’re on in 30 seconds”
Full interview here…
Read 4 tweets
14 mths Long Covid RHR 110 bpm ^ to 147 bpm *just* on standing. Still experiencing hypnagogic auditory hallucinations. There is an ongoing pathological process; it’s not rehabilitation patients need. #TreatLongCovid #pwLC #pwME #MedTwitter #MedEd #TeamGP
For anyone who thinks I’m exaggerating. Postural Orthostatic Tachycardia Syndrome (POTS) everybody:
Medics, if you haven’t heard of POTS pls educate yourselves. Many patients with Long Covid have a high resting HR (for the majority this is due to dysautomnia; a faulty autonomic nervous system, *not* anxiety). Some will also have POTs (i.e. ^ tachycardia on standing), as shown
Read 18 tweets
Great question; thanks for asking. The main reason people with medically unexplained physical symptoms (MUPS) are resistant to psychological therapy is because, they have been victims of relentless medical gaslighting./1 🧵
In absence of obvious biomarker & return of normal test results, patients with MUPS are often incorrectly ascribed a psychological diagnosis. Psychologisation of MUPS has become commonplace, and it is not acceptable. It is important to consider:/2
(A) The absence of obvious biomarker does not mean one does not exist. Simply, it has not yet been identified./3
Read 14 tweets
Happy to be a co-author of this article about #viralepersistence in #longCovid patients-found by dogs of @Env_Alfort- w/ Dominique GRANDJEAN, Dorsaf SLAMA, Capucine GALLET, Clothilde JULIEN, Marc BLONDOT, Maissa BENAZAZIEZ, Judith ELBAZ and Dominique SALMON #apresJ20 #Covid19
Dogs have already demonstrated high capacity in detecting Covid19 infection in acute phase (very high sensitivity)
Now they help demonstrating once more that #viralepersistence is present « in some Long Covid patient »..#apresJ20 #longCovid #Covidlong #Covid19 👇
I would like to explain why we wrote « at least in some Long Covid patients » : dogs positively discriminated half of the 45 people but there are surely much more #longCovid #Covidlong positive = with #viralepersistence #persistancevirale #apresJ20 👇
Read 23 tweets
Today I virtually lectured the residents from @BCM_PMandR & @UTHPMR about #LongCOVID.

I was touched that the residents wanted the slides & thought it was one of the most important talks of the year. Will share some in a thread 🧵 Selfie of Monica
We are still trying to figure out the pathophysiology of #LongCOVID... these are just a few of the hypothesis. But definitely inflammation and immune system dysregulation is involved.
2/ Image
We also know #COVID19 hyperinflammation and #PASC may be rooted in mast cell activation syndrome #MCAS 3/…
Read 10 tweets

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