Discover and read the best of Twitter Threads about #Longhauler

Most recents (19)

Has #pwME or #LongCovid managed to get oxygen therapy at home via the NHS?

#NEISvoid #LongHauler #MyalgicEncephalomyelitis
Why isn’t anyone studying whether home based oxygen therapy can help #pwME or #pwLC?

I see loads of studies of HBOT showing it helps & other studies saying we’re hypoxic. But HBOT studies annoy me because HBOT therapy *is not accessible* for most people! We need home therapy!
“The now retired ME/CFS specialist Dr. Paul Cheney also used to frequently prescribe home oxygen therapy to ME/CFS patients, even as little as 1 hour of treatment per day seemed to be effective” (from… )
Read 5 tweets
1/🧵 Hacked on Twitter - what did I learn⁉️

I & other physicians’ @verified @Twitter accts were hacked last week…
This “micro-dose” of being silenced reminds me to do all I can to amplify the voice of others.
And it made me want to share a few thoughts about this platform…
2/ How did it make me feel?

📍At the mercy of others
📍Out of control

Of course, it’s just social media

But how we handle ourselves here prepares us to fight #Testimonial #Injustice

No one wins if we stifle the voice & truth of another person.
3/ Detachment

I’ve been working on detachment from the lure of worldly things.

When the hackers stole control of my account, my 1st thought was that this was a perfect opportunity for me to practice detachment.

If I’m truly detached, my pulse should remain a calm 46 bpm 😎
Read 11 tweets
1) How I cured my #LongCovid in 3mos after suffering for almost a year. This was my last hope. I researched what #Covid does to the body, came up with a list of "clinically studied" supplements and...
2) took them all. Firstly, I am not a MD. In March 2021 I caught Covid while working as a #frontline #healthcare worker. My symptoms of #brainfog, #fatigue, #jointpain, #muscleweakness, morning #stiffness happened after my recovery. At the time, this #postcovid #syndrome was...
3) was just starting to be discussed online. The the term #Longhauler was coined. Those in the #ME, #CFS, #Lyme #MCAS #community starting speaking out about the similarity of #symptoms with #LC. #Covidclinics started to sprout up, include one at the....
Read 48 tweets
I am a late 20s "firstwaver." My #LongCovid story began in February 2020.

This is my experience with H.E.L.P. Apheresis.
I arrived in Mülheim, Germany in early November '21 by myself w/wheelchair support. The mobility aid was a necessity. Without it, I would have dealt with an exorbitant HR, difficulty breathing and more all before reaching my gate.
Approximately 4 weeks later with a combo of HELP apheresis and anticoagulant therapy..

My Long Covid was not "cured" by any means. But I noticed an improvement.

I could stand, walk, talk, move for longer. Cognitive function and ability to track were bettered.
Read 12 tweets
For those who asked, this study is accepting those hot local to Miami whether you are still in Fl or are willing to travel to participate
(see parts 2-5 for more info)
Mention my name when reaching out (Karyn).
For those new to this. This is my myocarditis doc at university of Miami doing this study.
-Covid attacks our endothelium, which we have in every aspect of our body. We complain of blood pooling, bad veins, easy brushing, poor circulation, hr and bp issues.
A lot of this is likely from endothelial dysfunction which I believe *may* be the trigger of pots or dysautonomia in many of us.
- I only grew 1 of 6 tubes back showing endothelial dysfunction.
Read 5 tweets
1/🧵Real World #LongCOVID: listen up
Words from a #LongHauler (shared w perm): “It’s been a year, Dr. Wes, & my hand tremors are getting worse. I don't have them all the time, but some days, for some reason, my right hand & my legs want to just shake… Image
2/ The tremors trigger me knowing it's going to be a tough day, so I try not to work on tasks such as like invoicing or complicated emails. If there's a fire I need to put out, I get someone to help me with it because my mind is just shot…

#brainfog 🧠 Image
3/ Today is a good example. After I got out of the hospital, I got a lot better for a few months, but then the #LongCOVID stuff started and I’m declining. I’ve never left my phone at home when going to work, and now I’ve done it 3 times. Misspelling simple words,…
Read 7 tweets
1/ 🧵 What is “Brain Fog” in #COVID19: discussion, papers & pts
 Brain Fog is a non-medical term but it works since it’s what pts describe. Whether in a ward, ICU on a vent, or months later as a #LongHauler w #LongCOVID, they are “in a fog.”

2/ Medically this is #Delirium acutely and #Dementia chronically + various forms of neuropsychological impairment coupled with #depression and #PTSD.
Our paper:
3/ Scientifically, it’s millions of neurons sick, dying or dead. This is depersonalizing & devastating. Fig A shows MRI 3 mos after ICU in pt w/out delirium vs B shows ICU pt w #Delirium. Duration of delirium predicted loss of 🧠 tissue.

Our MRI study -
Read 13 tweets
Passing the buck in complex chronic disease is common #MedTwitter. There is no, single specialist who can help people with these multi-system issues: it's up to the GP to learn the best treatments, testing, & management advice. A RESOURCES🧵(1/13 #longCOVID #PASC #MECFS #NEISvoid
Moreover, we will see more & more of these patients in clinic post-COVID, and passing them from specialist to specialist ad infinitum is not care. (2/13)
(2/) #MedTwitter #MedStudentTwitter #longCOVID #PASC #MECFS
Many (though not all) people with #longCOVID will meet the criteria for #MECFS. Here are some resources I on this often post-viral disease. I hope you find these valuable and will them share widely. (3/13)
Read 13 tweets
I am having a very tough time with heart and lung problems from the virus. 40% or more of people who get #COVID will have long-term damage to heart, lungs, kidneys, more. You really MUST protect yourselves and others. Please--#WearAMask, stay home🏡 #WashYourHands and stay safe.
Here are some data on common long-term impacts of having had the coronavirus, notably the heart. These issues are not to be confused with #longhauler syndrome, which is different and acutely disabling.…
The German study was even more concerning than the WHO study. 78% of covid patients had heart complications (like I have had). But even at 40% with some complication that is 10.4M Americans currently. Hardly a small number of people impacted.
Read 4 tweets
Important paper 👉 A team in Tokyo took RNA-seq data from the Genomic-#Tissue Expression Project: a public resource created to study tissue-specific gene expression/regulation from 54 tissue types collected from 1000+ healthy individuals at autopsy:…
2/ They successfully identified 39 viral species in at least one tissue (tissue types included #brain, pituitary, esophagus, thyroid, #heart, breast, lung, kidney, adrenal gland, prostate, #nerve, adipose tissue, blood vessel, ovary, uterus etc)
3/ Viruses identified in the various tissue samples included EBV, HSV-1, Varicella, CMV, HHV6-A/B, HHV-7, HCV, HPV, adeno-associated virus...and 16 RNA #viruses including Respiratory syncytial virus (RSV), Parainfluenza Virus 3..
Read 12 tweets
GEJALA JANGKA PANJANG setelah terkena #COVID19 ?

“Sindroma Long Covid”

Beberapa pasien mulai mengeluhkan gejala setelah hasil swab mereka negatif

@blogdokter @afrkml
#LongCovid #longhauler
Ada yang masih ga bs cium bau2an dan kalau pas makan jadi gada rasa, efeknya nafsu makan turun
Ada yang sesek mulu bawaannya, ampe kaya sakit asma, kemana-mana bawa inhaler
Read 7 tweets
Important concern is whether President Trump becomes a covid #longhauler — which includes a host of potential symptoms including serious neurological issues that can last MONTHS.


Image is from:…

<thread> Image
2. "As many people reported 'brain fogs' and concentration challenges as coughs or fevers. Some have experienced hallucinations, delirium, short-term memory loss..."

via @edyong209…
3. "What’s unusual about the long haulers is that many initially had mild to moderate symptoms that didn’t require lengthy hospitalization—if any—let alone intensive care."

Journal of the American Medical Association (JAMA)…
Read 3 tweets
1. Many people suffering from long-term #COVID19 symptoms are being told - it's just anxiety, it's acid reflux, there's nothing wrong with you - even as research shows COVID-19 damages the heart, brain, & vascular system. Why is this happening?
2. This is the first time this virus has invaided the human body. We are just learning how it spreads, how it attacks the body, and the damage it does to our health. COVID-19 patients are first-hand experts in this new disease. So why do they encounter so much disbelief?
3. This disbelief has happened many times before. #LymeDisease, #chronicfatigue, Post-intensive Care Syndrome, and so many other diseases are life altering for those who have it. And met with skepticism by those who don't. COVID-19 is novel and world-wide, but here we are again.
Read 8 tweets
Die @welt berichtet mal wieder von einem #LongCovid Fall, leider mal wieder ohne Covid19.
„Ich komme heute an meine Grenzen, wenn ich 200 Meter zum Briefkasten und wieder zurückgehe. Das [PCR-]Ergebnis war *negativ*, auch AK konnten bei ihr nicht nachgewiesen werden."
Diese Patientin ist Stv. Vorsitzende des schwedischen Covid19-Vereins. Ihre Kinder waren erkältet, nun ist sie überzeugt, ein #longhauler zu sein. Es ist praktisch ausgeschlossen, dass das Virus deratig starke Schäden im Körper anrichten kann, und dann keine AK Reaktion auftritt.
Ob man Sie auch Influenza getestet hat?
Read 3 tweets
Daily Bookmarks to GAVNet 08/28/2020
Rare Volatility Jump Flashes Warning for Record U.S. Stock Rally - Bloomberg…

#stock #warning #rally
'Threadbare' US System Denounced as Study Shows 12 Million Lost Employer-Tied Health Care During Pandemic | naked capitalism…

#HealthCare #pandemic #capitalism
Read 7 tweets
After 5 months of explaining my #COVID19 symptoms, coordinating w/ fellow WOC long-haulers in NYC/BOS, and ordering my own labs to rule out other ailments, my PCP confirmed that my symptoms since April align w/ ‘Post-Covid’.

Why? A @edyong209 article.

A #LongCovid thread. 1/18
My PCP is a well-respected, Harvard-trained practitioner who specializes in millennial women.

She was “unaware” until July that fit/healthy young women could exhibit long term COVID-19 symptoms despite articles from the Atlantic and NYT in May/June...or her patients. 2/18
When I originally displayed symptoms in early April in Boston, I tried to obtain a COVID-19 test but couldn’t until 4 days later.

They typical ideal testing window for when someone becomes symptomatic is 4-5 days. Hence, I already knew the likelihood of a false negative. 3/18
Read 18 tweets
"#LongHaulers Are Redefining #Covid_19: Without understanding the lingering illness that some patients experience, we can’t understand the #pandemic."

In-depth reporting by @edyong209.
Include some discussion of #MEcfs…

#CFS #MyalgicE #PwME
“[#Covid] #Longhaulers had to set up their own support groups. They had to start running their own research projects. They formed alliances with people who have similar illnesses, such as dysautonomia & #myalgicencephalomyelitis aka #chronicfatiguesyndrome
#Covid19 #Covid_19
“More than 90 percent of [#Covid] #longhaulers also have “post-exertional malaise,” in which even mild bouts of physical or mental exertion can trigger a severe physiological crash. “We’re talking about walking up a flight of stairs and being out of commission for two days,”
Read 9 tweets
Update Day 150 (!!!!): This one's a bit of a mixed bag. Let me start with the good news. My husband and Kid 2 are asymptomatic and have been for a couple of weeks. Kid 2's energy is back and then some.
#COVID19 #CovidLonghaul #LongHauler #ApresJ120 #CovidandKids
Kid 1's only symptom is a swollen lymph node in her chest that has been stubbornly hanging on for weeks now. We took her to the osteo yesterday and by working on her neck and shoulder, the osteo managed to bring it down in size, but the bump still bothering Kid 1.
Kid 3 got a steroid inhaler four weeks ago. After a week of using it, she had 8 blissful cough-free days. Then the cough came back. We now seem to be in a holding pattern, with 2-3 days of coughing, followed by 2-3 days without. Still waiting on the respirologist.
Read 7 tweets

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