Discover and read the best of Twitter Threads about #TreatLongCovid

Most recents (24)

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
#LongCovid has cost me everything — my health, my home, my career, proximity to everyone I know and my ability to rebuild what was destroyed. I’ve been without income for over a year. This virus has taken my life — without actually killing me.
2) Because SunLife wrongfully denied my long-term disability claim, I had to sell my new dream home to survive. My #LongCovid symptoms started only six months after moving in.
3) I say ‘wrongfully’ denied because I’m genuinely sick — I’m not faking it, lying about it or making it up. I’m not lazy, unwilling to work, hoping to retire early or attempting to commit insurance fraud. I am completely debilitated by #LongCovid and incapable of working.
Read 9 tweets
A word of warning. I’ve had Long Covid for 12mths and counting. In this time, I’ve been diagnosed with neurological sleep apnoea, encephalitis, sensorineural hearing loss, tinnitus dysautomnia and POTs, and myopericarditis. I was never hospitalised. My case is mild.
So those say Omicron is ‘mild’. Just be mindful. This is what a mild case looks like. #TreatLongCovid
Read 6 tweets
1/9 Thread on the narrative around #longcovid

Commonly, the narrative around long covid is that we need to ‘understand how long the condition lasts’. I find that concerning.
2/9 It implies that #longcovid is a condition that will self-resolve with time, i.e. medical intervention is not needed. But we do not know this, which makes it a dangerous assumption.
3/9 If anything, @resiapretorius’s work on microclots and platelet hyperactivation suggests otherwise. New organ damage, occurring at any point during the disease process - including many months down the line, also suggests otherwise.
Read 11 tweets
My last few days on Twitter in health officials’ and MDs’ mentions urging them that “maybe you should think more about #longCOVID” feels eerily like Feb 2020 when I was urging “we need to mask the entire population.” Still remember when this was a minority opinion among experts
To be clear, I wasn’t the only one. I used to live in Asia, and spent time in cities where, out of politeness, people mask themselves when they *have a cold* to avoid sharing it with others. When it launched, I went bananas supporting the #masks4all campaign.
I am convinced this grassroots, mainly Twitter campaign brought us the one of the most effective risk reduction tools of this pandemic, which is both inspiring and deeply, deeply sad on many levels. (As in, it shifted national policy.)
Read 4 tweets
I’m having a hard time approaching this wave with enthusiasm. My body isn’t right, but neither is my brain. The post-Covid cognitive effects are so bad I truly wonder if I’m sundowning. It’s scary & puzzling, but it’s not safe to get care. I’m beginning year 3 with few options.
I had a mild case—never hospitalized. I’m bedbound, need surgeries I can’t get, specialist wait times are astronomical, & my PCP doesn’t return calls. I’ve lost 40 lbs, I don’t sweat or make tears, I can’t feel hunger or thirst, I have tumors & heart damage. “Mild” means NOTHING.
My autonomic system is shot, & several months ago I was diagnosed with Chiari Type I. I hear people are reporting *acquired* Chiari post-Covid. There are no answers. No one knows about late effects or how long survivors will actually survive. We can’t let everyone get infected.
Read 6 tweets
There is an ongoing pathological process occurring in those with LC - evidenced by inc mortality in the first the year post acute infection & prevalence of ongoing end-organ damage - in desperate need of urgent investigation & intervention.
It is not uncommon for pts with Long Covid to develop myopericarditis, encephalitis, dysautomnia, POTs, tinnitus, sensorineural hearing loss & visual deterioration, in the mths following an acute infection with SARS CoV-2.
Read 14 tweets
PHASE 1 LAUNCH! New study reveals yawning gap in medical care for energy-impaired

#pwME #NEISvoid #FBLC #LongCovidWork #LongCovidCosts #TreatLongCovid #CountLongCovid #miilionsmissing #HealthEquity #patientled #medtwitter #wellless

A THREAD > Image shows 'energy' used for patient activities on a graph
Long-Covid visual report quantifies money, time, work and energy spent on the battle to get medical care, and introduces new language of the “well-less” to improve patient awareness and support.
@long_covid @longcovidwork @actionforme @chronicinclude #EDS #PoTS #postviral Image shows a new healthcare spectrum from Well[ness] throug
I tracked and analysed my own health interactions from 2020 across nine different self-data sources, including @BupaUK @Bupa , @LloydsBank , @timspector (Zoe Covid Symptom Tracking App(, email, SMS, mobile and calendar data #Datavisualization #selfanalytics #dataviz
Read 25 tweets

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