Discover and read the best of Twitter Threads about #Longhaulers

Most recents (24)

Covid #LongHaulers please take note.
Those in the #MEcfs community has been down the Post Viral Sydrome road for decades now.
The CDC is fully aware of our plight, but has done little in the way of research or help.
#ThisNeedsToChange
Thread... Image
2-It begins, usually, with an infection.
For the majority of #MyalgicEncephalomyelitis pts it was the Epstein Barr Virus. But there are other infections that lead to #MEcfs as well. In almost every case the person knows that from that point, they were never the same again. Image
3-For some the progression is slow, fits & starts of decline.
Many continue with some sense of 'normalcy' in life for years. For others the onset of their post viral syndrome happens immediately and functional decline deterioration of all body systems is rapid.
#LongCovid #MEcfs Image
Read 10 tweets
It's a Mistake

"Mass spectrometry we confirmed (S1 protein) with the peptide sequencing
The one thing we found with the post vaxx (Long Haulers) that we didn’t find with the (convalescent) Long Haulers was that we found MUTANT S1 and we found S2 proteins…in the monocytes.>
The amino acid sequences, in some of these patients...the AMINO ACIDS ARE DIFFERENT than what the S1 is usually coding for….could be making antibodies that are defective.
We didn’t find the mutant S1 or the S2 in the Long Covid never-been-💉 group." Dr Yo @ 50:00
Read 8 tweets
PHASE 1 LAUNCH! New study reveals yawning gap in medical care for energy-impaired
thisiswellless.com

#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
#LongCovid has had a devastating effect.
Ive lost my independence and quality of life.
So many of us #LongHaulers are sadly still waiting for medical treatment.
Those from early 2020 like me have been waiting for >1.5 years

When we say #TreatLongCovid... (1/8)
We dont just mean patient 'self management'.
#pwME #MECFS wrote the book on that (stop,rest,pace) and we have learned so much from them. But we need more than 'self management'. That's all we've had for months-years. We need medical treament

When we say #TreatLongCovid ...(2/8)
We don't just mean #rehabilitation. Ofc rehab is important, but its inappropriate to expect someone with a multi-system inflammatory disorder to heal through rehab when there has been no assessment and treatment first.We've gone from high functioning to incapacitated due to (3/8)
Read 8 tweets
#LongCOVID has long told the story of the vascular nature of #COVID (thank you Lauren for your incredible art) [all images described in tweet or AltText]
#LongCOVID #LongHaulers have talked of the vascular effects of #COVID since Spring 2020, when many felt first-hand the multi-system viral effects
#LongCOVID While #COVID enters the body through orifices & progreses you the kings, we now know that #COVID replicates in our cells, including our blood, thereby altering our bloods environment. This altering of our biochemistry impeded oxygen transfer to organs While #COVID enters the body through orifices & progreses yo
Read 15 tweets
1/🧵For months I’ve been grappling with what seemed like a real gap in conversations about #LongCOVID.

Here in @STATnews, I introduce you to 30 references & 3 #COVID survivors – Ray, Pam, and Carolyn – who taught me a lot. I hope you think so, too…

bit.ly/2Zb9S2J
2/ "I feel like I'm getting the silent treatment & it's killing me," #LongCOVID pt Pamela Bishop confided in me about her months-long interactions as she tried to get answers about a strange array of symptoms that have plagued her since recovering from #Covid19.

Pam then & now…
3/ Up to1 in 3 COVID survivors report experiencing #longCovid symptoms 3 to 6 months later. Their stories give me an extreme case of déjà vu because this is playing out similarly to the problem of long-term survivorship after non-COVID critical illness.
 
bit.ly/3vzcIdn
Read 26 tweets
I’ve been out for the past 6 months.

I think I want to write about it.

Deep breath: here is my #LongCovid story.
You may remember this tweet from April of 2020.

Gandalf let me down, and I ended up getting #COVID19 just 3 weeks after getting H1N1 influenza. (I am a doctor and toddler mom, pretty germy).
The night that I got #COVID19 it felt like broken glass was running through my veins. No fever but just that icy chill. Horrible, rotten smell in my nose. And strangest of all a buzzing feeling, a restlessness. It made me want to crawl out of my skin. I couldn’t sleep that night.
Read 25 tweets
😷DAY 2: FLORIDA MASK TRIAL😷

Day two of the trial begins in a few moments.

Several Florida families are suing @GovRonDeSantis and the Dept. of Education over the ban on mask mandates.

Plaintiffs (families) are still presenting their case.

WATCH LIVE:
I live tweeted Day 1 of the trial yesterday, you can see that whole thread here:

As I mentioned yesterday, it sounds like the families' attorneys will be calling Dr. Mona Mangat of St. Petersburg as a witness today.

I've spoken with her before about her #COVID19 concerns:

wfla.com/community/heal…
Read 218 tweets
1/🧵🎥 “Doc, TIME is BROKEN.” ⏰ #BRAINFOG in #COVID19 is something like this stuttering second-hand on a hospital room clock with a low battery. Imagine if your brain stuttered like this! This video was taken by an ICU survivor who told me how the clock contributed to #Delirium.
2/ Now our @CIBScenter ICU survivor @SGFesquire sees how the clock not only contributed to his delirium but symbolized his brokenness & need of healing (pic w perm). Brain Fog presents as delirium when 1st sick & as cognitive impairment (memory + mental slowness) in #LongCOVID.
3/fin
Ongoing Brain Dysfunction = major suffering. Let’s be patient with #LongHaulers. They look normal & are silenced like #MECFS pts. Patients, seek help. We will help you “unbreak time.” We do this through cognitive rehabilitation tools. #recovery

bit.ly/3y8vaJt
Read 3 tweets
IMPORTANT 🇮🇹 study🔴 -> "Vascular uptake more marked in the examinations of the patient who developed #longCOVID. These findings suggested that vascular inflammation and its duration are responsible for the clinical course of the disease and the development of long COVID."👇
This matches with @MartaEsperti and @JasmineHayer documented cases.
#Vasculitis-like explains at least a subset of #longhaulers?
In which extense this can happen also in other organs and especially brain?

CC @apresj20 @long_covid @LongCovidSOS @apuakoronaan @ZeroCovAlliance
Read 4 tweets
What do we know about #LongCovidKids ?

We know that at least 8% of secondary age & at least 7% of primary age kids who get #COVID19 will get #LongCovid.

A quarter of children hospitalised still have symptoms at 8.5 mths

#LongHaulers
We know that #longcovidkids often report feeling brighter after 2-3 wks post #COVID19 infection & then develop #longcovid symptoms wks 4-6.
With the longest gap between infection & symptoms reported at 8mths.

Kids 🤒 in March 2020 are still reporting new symptoms.
What else do we know about #LongCovidKids ? We know that the top 10 symptoms reported in our survey are;

🚨 Gastrointestinal Issues
🚨 Chest Pain
🚨 Headaches
🚨 Fatigue
🚨 Joint / Muscle Aches Pain
🚨 Sore Throat
🚨 Dizziness
🚨 Rashes
🚨 Mood Changes
🚨 Nausea

#Kids
Read 7 tweets
1/🧵The Nightmare of #COVID19 & #LongCOVID
 
Im a doctor who is now spending more & more time daily caring for #LongHaulers (pts w LongCOVID). I just got a TINY dose of what it must feel like to be unheard and unseen…AND I want to apologize to you.
 
#MedTwitter #NurseTwitter
2/ I just keep hearing you say, “Doc, why doesn’t anyone believe me? My friends look at me and think I’m fine, even as I feel further and further adrift. I’m not myself and I can’t tell if I ever will be again. #COVID has ruined my life.”
3/ Yesterday as my plan landed, my phone vibrated. It was the wife of a former ICU #COVID pt, now trached & living on a vent in an LTAC, asking how she can get his new docs to understand & carefully manage her husband’s ongoing #LongCOVID & Post-Intensive Care Syndrome (#PICS).
Read 13 tweets
Daily Bookmarks to GAVNet 05/15/2021 greeneracresvaluenetwork.wordpress.com/2021/05/15/dai…
Non-hospitalized COVID-19 patients: Low-risk of serious long-term effects, but more visits to doctor

medicalxpress.com/news/2021-05-n…

#COVID19 #LongHaulers #risk
Read 10 tweets
"Physicians like disease & injury to be visible, if they are going to accept it as real."

I'm going to start w/ a focus on #MECFS, and then round out this tweet-thread w/ a segway onto why all this matters for #longcovid, too. This chronology is poetically fitting, at any rate.
We know by now that #MECFS brains are generally replete w/ neuroinflammation. PET & MRSt scans demonstrate this readily and consistently.
We know by now that metabolites, like lactate, choline-containing compounds, myo-inositol, & N-acetylaspartate, are considerably altered in #MECFS brains, and this is readily demonstrated via MRS scanning.
Read 12 tweets
After many months of planning and hard work by so many (incl. @hmkyale @Dianaberrent @wade_schulz @CharleszYaleMed @Aaronmring @DaisySMassey @JeffGehlhausen), today, we are launching our research study to understand how vaccination may help improve #longcovid. 🧵 (1/n)

Pls RT🙏🏼
This study will examine how vaccines might improve the symptoms of #LongCovid. We are recruiting people with long covid (PCR+, Ab+, T-test+, or COVID diagnosed by medical doctor) who live in Connecticut, >18 years old, and have not received vaccines yet but are planning to. (2/n)
To participate in this study, you will be asked to complete 4 online surveys and provide blood and saliva 3 times at sites in New Haven Connecticut. If you are interested in participating, please email covidrecovery@yale.edu (3/n)
Read 10 tweets
Daily Bookmarks to GAVNet 04/29/2021 greeneracresvaluenetwork.wordpress.com/2021/04/29/dai…
What life conditions drove you to work for societal and cultural transformation?

campus-coevolve.org/what-life-cond…

#transformation #society #culture #biography #LifeConditions
Large-scale origami locks into place under pressure

nature.com/articles/d4158…

#LargeScale #OrigamiDesign #FacilityStructures
Read 10 tweets
Body Politic has published an important open letter to the @NIH @NIHDirector urging the prioritization of #LongCOVID research that builds off prior research into #MECFS and related conditions.

👉 wearebodypolitic.com/bodytype/2021/… by @itsbodypolitic @fi_lowenstein @ItsAngInLA The organization Body Politic has written an Open Letter to
In December, Congress provided $1.15 billion over 4 years for @NIH to “support research into the prolonged health consequences of #COVID19”. With many newcomers to the field there’s cause for concern that experienced #MECFS researchers may be overlooked. nih.gov/about-nih/who-… “We are writing today to urge the NIH to prioritize fundin
#LongCovid and #MECFS have much in common and are increasingly joining forces to drive change that might lead to diagnostics, treatments, and a cure. “Long COVID patients share both symptoms and experiences w
Read 10 tweets
Dr David Strain, a medical lecturer at the University of Exeter who runs long Covid clinics, says he is “seeing more and more cases of children who’ve got long Covid” and thinks the prevalence in children is probably underestimated. #longcovidkids
thetimes.co.uk/article/the-ra…
"There is no easy definition of long Covid. It’s “a bit of a hotchpotch”, says Strain, University of Exeter. “Although we talk about it as if it’s one disease, it’s very clearly multiple pathologies affecting different people differently"

#longhaulers #longcovid @thetimes
Read 5 tweets
If I read #federalbudget of #Canada Correctly
@cafreeland committed $12M over THREE YEARS to TALKING about how to implement a disability benefit some point in the future (maybe)
(But $13M to ensure MAID happens)

So no #inclusion & #inclusive recovery for #ODSP #CPPD #SAID #AISH
At this rate, with what the provinces are doing to #PWD @JustinTrudeau @cafreeland You won't have to worry about #MAID or a #Disabilities Benefit cause the problem is going to "Solve itself"
They Can't Afford to live NOW Damn it !
3 weeks to invent #CERB
4 YEARS to maybe help PWD
How many more times are they supposed to say
"Maybe next year, people will care"
How many more decades ?
How many more wasted PWD lives because
Canada won't put the well being disabled people equal to those who are "Able" ?

How many more GENERATIONS @JustinTrudeau ?
Read 6 tweets
Yesterday was my #covidversary. It's been one yr since my partner @israelfloresta & I got covid19.

We both tested negative. Now, we both have #longCOVID.

Here are some thoughts about this experience 👇🏽

#1year1virus
1/
I have a PhD in biology, I work with infectious diseases and I have done thousands of PCRs in my lifetime.

Yet, processing the implications of a (-) test while being ravaged by brain fog was humbling to say the least.

#1year1virus #longCOVID
2/
We had access to testing early on because I was fully symptomatic and @israelfloresta was an essential worker. By the time we received the test result and it was (-), we were both getting worse. Our symptoms were dismissed and we were declined a 2nd test.

#1year1virus
3/
Read 15 tweets

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