Discover and read the best of Twitter Threads about #LongHaulers

Most recents (24)

Three years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing grassroots movement of people, who weren't recovering from covid. Across the world, we're still fighting for research and treatment of our disease ImageImageImageImage
#LongCovid as a disease concept first grew out of a collective, grassroots, international, patient-driven movement of Covid survivors in early—mid 2020. As a disease entity, LC was recognized by the WHO in August 2020 thanks to intense patient advocacy…
Today Covid—Long Covid are—is among the most studied diseases in medical history. A search on the repository for scientific papers PubMed for *covid gives over 355,000 results. Papers include vast research on the long-term effects of SARS-CoV-2 infection
Read 9 tweets
Three years ago today the first known Italian patient tested positive for SARS-CoV-2: "Patient 1" was M.M. a 38 marathon runner who wasn't recovering from an "atypical pneumonia". He hadn't been to China. It was the day many understood Europe had fallen.…
M.M. was swabbed for SARS-CoV-2 despite not having been in China by anesthesiologist Annalisa Malara MD, whom I want to remember for her intuition, courage and promptness. By alerting the world of local transmission in Lombardy, she contributed to bring Covid into the spotlight
Dr Annalisa Malara probably saved the life of "Patient 1" M.M. and many other lives who could have been lost if "silent" SARS-CoV-2 hadn't been finally recognized within one of the most connected areas in Europe, the Lombardy region in Italy
Read 9 tweets
Cognitive Impairment in survivors of #LongCovid: A 🧵. Before the pandemic, I worked with survivors of critical illness in clinical/research contexts at the @CIBScenter and @ICU_Recovery. Since 2020, I've focused on neuropsychological issues in #LongCovid. What have we learned?
"Brain fog" might better be called "brain injury" as the cognitive impairment that impacts many #longhaulers is like a brain injury in nature - it happens abruptly, impacts a wide array of cognitive domains, often is not progressive, and may respond to rehabilitation. @CIBScenter
Cognitive impairment after #Covid can be related to illness severity, yes, but that doesn't mean that people with mild illness don't grapple with impairment. Indeed, cognitive deficits can be very profound and persistent in those who were not terribly sick. @CIBScenter
Read 7 tweets
I’ve spent years of my life helping (or at least trying to help) people in my country, NZ 🇳🇿, as a frontline health worker.

Like many in the health sector, I put others 1st. Working continuously in 2020-2022. No lockdowns for us!

In June of 2022, I got Covid-19…/1
…and while I cannot be sure who I got it from (like it matters), it was likely a patient or colleague who gave me the gift that just keeps on giving.

Now I’m in month 7 of #LongCovid & my life has changed in ways I could never have imagined. /2
Twitter has been a great way to find & connect with other #Longhaulers around the world. For that I will be forever grateful. But, even with my thick skin, I can see I am wasting my time on here. I’m sick of the trolls, the doubters, non-believers and gaslighters. /3
Read 12 tweets
I talked to @aboutlongcovid about the rise of #LongCovid as a patient-led advocacy movement in early to mid 2020. I also highlighted the key role of the patient community on social media in fighting misinformation and providing key support to survivors…
A note: the original piece was longer and was shortened for the blog format. The original story of #LongCovid rise is much longer! More info in the article attached. The role of digital advocacy is also more complex and deserves further attention…
Some key pointers: #LongCovid was born as a patient-led advocacy and research movement in 2020. The patient-made name Long Covid— as an hashtag— helped to link the grassroots advocacy movement, which was growing in spring 2020 in different countries, like with #apresJ20 in France
Read 9 tweets
It was known SARS was leading to chronic disease before this pandemic started. Yet, COVID, from a not dissimilar virus, SARS-CoV-2, has been presented across the pandemic as "just a bad flu" or a "cold"
We need accountability
#LongCovid #longSARS
Obviously, we also knew other viruses were leading to long-term sequelae. This is the case of influenza, too, in some cases. But SARS-CoV-2 as a pathogen was quite similar to SARS CoV. It's called SARS-CoV-2 for a reason. Yet, SARS morbidity was not addressed in policymaking
The first news out of China were speaking of a "potential SARS outbreak". Already on 31 December 2019. Not a "cold outbreak"…
Read 17 tweets
On 8/7, we discussed the Biden-Harris Administrations reports on #LongCOVID & offered a full circle look at where we are as a community & what is needed to move us forward to ensure each action in motion today, makes it over the finish line. 1/25 🧵

We discuss the need for you, your friends & family & other community allies to GET VOCAL & help get policymakers to understand the decades long impacts that #LongCOVID will have on their communities due to its systemic effects. #AllHandsOnDeck for #LongCovidAction
If more people got involved in the efforts happening now, the sooner millions could see help! If we don't begin changing public policy now, we may miss our window of opportunity to do so in our lifetimes. We need action now! Not later, not in a few months, not next year, NOW!
Read 25 tweets
On 8/11, the @CDCgov revised #COVID19 guidance as to “not disrupt daily life." These changes are reckless.

18M+ w/ #LongCOVID experience significant daily disruptions to life. This revision indicates those casualties are acceptable in exchange for comfort. #StoptheSpread 🧵 1/7
We are calling on the @CDCgov to recognize the long-term, systemic health & socioeconomic impacts caused by the disability faced as a result of #LongCOVID & its associated conditions, a result of the initial #COVID19 infection.

Preventing infection prevents #LongCOVID.
The U.S. has seen over 1 million deaths due to #COVID19 & 1 in 5 infected develop #LongCOVID.

At current *documented* case counts, the U.S. has ~18 million #Longhaulers. The @CDCgov 's own data estimates only 1 in 4 cases are actually documented. (4x as many w/ #LongCOVID).
Read 8 tweets
The U.S. Department of Labor is asking YOU the important questions!

Please Vote For Us & Our Recommendations!…

Recommendations put forward for the #LongCOVID community came from your participation over the last 2.5 years! Please help elevate those needs! Image
You do need to register to vote which you can do here

We have put together a video " C-19LAP: Navigating the Department of Labor (DOL) Long COVID Online Dialogue" which you can also find here!
If you feel @C19LH_Advocacy should be involved in informing stakeholders,we need you to go vote for us! Unfortunately, votes will be considered, and we do want to ensure we have a seat at the table to advocate for you! Image
Read 15 tweets
A little known but potentially important clinical trial using a mixed probiotic for mild Covid-19 for 30 days. 3 of the 4 strains were Lactobacillus plantarum strains.
The majority of #longhaulers, experience a flare-up of their symptoms after taking just one capsule of L plantarum. Sometimes for 3 or 4 or 5 days. This may be stimulating Type I interferon production via one of our cell's Pathogen Recognition Receptors: cGAS
This may be a way to bypass the viral suppression of Interferon production in infected cells. The production of Interferon stimulates hundreds of genes and makes our cells (and neighboring cells) a very unfriendly place for pathogens - including SARS-CoV-2.
Read 5 tweets
This is what concerns me. Bear with me in this thread. Prior to #omicron sub variants, I could reassure patients & tell them they probably had a few months of protection. Not anymore. Cause if you had omicron, you are not likely protected against the newer BA.4 & BA.5 strains.
Hence your risk of infection & then reinfection is now very high. Why? Cause these #variants are escaping the #vaccines.
So for those living their lives & not trying to avoid the virus, your risk of #longcovid is very high.
I am especially pleading to the young population, the last thing you want is suffer from #brainfog & #shortnessofbreath for the rest of your lives. We don’t have a cure at this point for #longhaulers. Your goal should be to AVOID this virus but if not, avoid getting reinfected!
Read 6 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
1/🧵 Long COVID Brain Science: 🧠

For ~100M suffering 🌎, let’s use data to combat myths & #Misinformation

COVID is biologically dangerous long after virus is gone

#LongCOVID affects our….

📍Olfactory & Limbic Systems
📍 Interferon Autoimmunity
📍PET scans

How? Image
2/ First, Epidemiological comparisons…


Survivors of viral infxns like #Flu don’t complain of 200 long-term symptoms & ~90% ongoing mood disorders.

#LongCOVID pts do.

Flu kills 0.5M/year vs COVID has killed 10X that (5M) in just 2 years.
3/ Consider this:

A study of 150k COVID survivors, hospitalized & not.

COVID survivors had 10-15X ‼️higher risk of considering #suicide at 1 year than 11M control patients.

This is horrifying, yet people still deny #LongCOVID’s importance.

WHY? ImageImageImage
Read 27 tweets
Letter: the pandemic is not over. I agree. I'm pleased to see here recognition of #LongCovid and the risks to the public. Just a note: the @CDCgov openly addressed SARS-CoV-2 sequelae a few days ago. But we've known about Long Covid for over 2 years 🧵
Reports of prolonged covid illness started to emerge from early hotspots like Lombardy, the UK, Spain, France in March to April 2020. People affected by covid, often left at home with no care, gathered on social and other media e.g. Twitter to share their experiences

Many of the earliest advocates and patient-researchers were so ill to have to resort to little pieces of writing like tweets, or blogs, to describe, in a completely innovative way, a new disease

@felicitycallard and I recount the story here…
Read 13 tweets
If you've been following me since last year, you'd know that I got COVID then and have been recovering with #LongCOVID. For almost 6 months now. In this thread I want to bring awareness to some of the very generous people I've met in the group who really need your support. 1/n
Dave @D_Bone, with Angela @TheExtraFiles, hosts 24hr zoom chats for #longhaulers. Like many, he is no longer able to work because of complications from Long COVID. He created the @initfortheLHpod platform. Please support if you can ♥️ 2/n
Tracey @haziethompson is someone I've learned a lot from in the group. She is a former chef who once enjoyed cooking and serving up amazing dishes. Now, because of Long COVID she is unfortunately housebound and cannot work. Please support if you can ♥️ 3/
Read 9 tweets
If Covid does deplete connective tissue, then #longhaulers should start looking a lot like patients with the connective tissue disorder Ehlers-Danlos Syndrome (EDS). One of the problems of EDS can be issues in the brain and spine that sometimes require neurosurgery. A thread:
In the book "Disjointed" -- a recent textbook comprised of essays regarding Ehlers-Danlos Syndrome -- Brown University neurosurgeon Petra Klinge has a chapter entitled "Neurosurgical Considerations."
In it, she reviews the possible neurosurgical problems of EDS patients: Craniocervical Instability and Atlantoaxial Instability, Chiari Malformation, Tethered Cord Syndrome, Spontaneous Intercranial Hypotension, and IIH.
Read 14 tweets
1/ An important thread on Long Covid and #viralpersistence

“Almost all infectious outbreaks leave behind a proportion of pts who remain chronically unwell with symptom patterns similar to #LongCovid. This is known as the ‘long tail’ of epidemics.”

2/ Clues can be gained from studying survivors of the SARS (SARS CoV-1) outbreaks of the early 2000’s, and the West Africa Ebola crisis of the past decade.
3/ After SARS CoV-1 in 2002 - 2004, some survivors were reported to feel “weak, extremely fatigued, had aches and pains all over their body, and they were completely unable to work”

Some also reported ‘sleeping extremely poorly’.
Read 25 tweets
BIG PROBLEMS with framing of new baseline study of NIH intramural #LongCovid #PASC cohort

lack of abnormalities on ROUTINE tests

no objective abnormalities

It ignores #LongCOVID similarities to #MECFS & advances in research on both, including those funded by NIH!

no evidence found

evidence against


Yes, it's a baseline study. But the pivot to discussions of depression and anxiety when abnormalities weren't easily found is jarring.

This follows the HORRIFYING tendency of medicine to psychologize illness, when physiological abnormalities aren't found.


Read 15 tweets
Two years ago today the term #LongCovid was first used as a Twitter hashtag. A single tweet by a patient linked together a growing, grassroots movement of people who weren't recovering from covid. Across the world, we were fighting for recognition and studying our own disease

#LongCovid is now one of most studied diseases in history. It's not "rare" or "mysterious". It was recognized by the WHO in August 2020 already, after an history-making meeting with advocates and patient-researchers. We have come that far.…
And yet, this pandemic is a mass disabling event. Treatment options, open communication, and support for patients are still lagging behind. We will not stop fighting for the rights of people living with #LongCovid and other complex chronic diseases.
Read 28 tweets
2 yrs ago, to raise awareness for the #MillionsMissing due to #MECFS, I started a 🧵 on how tragic chronic illness has consumed my life

But I was too sick to finish, & shortly after uninstalled Twitter. Trapped by illness, unable to advocate.

2 surgeries later... 🧵, 🎬 2

2017: I was Prof of #Epidemiology @PublicHealthUGA, researching #HIVprevention and #vaccine prep for emerging epidemics. I directed an epi training program @ICI3D. I loved my work & my amazing colleagues!

I was healthy & active 🚴🏄‍♂️ 🥁

Then, I bought a 🏡 and had it renovated. Jan 2018 I moved to the newly built master bedroom addition, I became sick.

⏩ 2 years to 2020. Water burst thru walls on 2 sides of my bed. Revealing walls, subfloor, crawl space filled with mold due to construction defects

Read 22 tweets
Next is Dr. @aucott_john on Lyme disease and infection associated chronic illness. Lessons from COVID Long Haulers and ME/CFS.
Infection associated illness is not new. #LymeDiseaseAwarenessMonth
Dr @aucott_john quickly noticed the symptoms of #LongCOVID were very similar to #LongLyme. Can occur in patients with mild illnesss. Something similar in how these diseases are affecting humans (P.S. Long-haul does not occur post-flu.) #LymeDiseaseAwarenessMonth
Patients with chronic illnesses are often disbelieved. It is difficult as there are no diagnostic tests to prove "Long haul" is real.
Read 16 tweets
Patients started to report not recovering in March, April, May 2020. The first patient-made names and hashtag like #apresJ20, #longhaulers and #LongCovid emerged to draw attention to prolonged covid illness. In June 2020, Long Covid was now trending on social media 🧵
By July 2020, #LongCovid was being discussed extensively on both social media and in the press, in countries like the UK. On 21 August 2020, advocates and patient-researchers met with the @WHO, obtaining open recognition of the disease. Between late spring and early autumn 2020 ~
patient-researchers and advocates were publishing the first papers and reports in the world on prolonged covid symptoms and #LongCovid. These included surveys, blogs/opinion pieces in medical journals, and the first peer-reviewed publications. From these papers 🧵
Read 9 tweets
Trigger warning for #LongCovid #medicaltrauma
A thread of 6 tweets. This is the first time I’ve spoken publicly about my #LongCovid Image
If COVID is the war, then #longhaulers are our veterans and we must take care of them!
-@dianaberrent, founder #SurvivorCorps
(2/6)I was diagnosed with Long COVID in April of 2021 and due to my significant cognitive impairments and treatment resistant depression, I became unable to work.
Read 7 tweets
🧵Thread - post-Covid cardiovascular issues incl. tachycardia, arrhythmia, POTS, inflammation.

Peer-reviewed & not p-revd. Different perspectives & findings.

This is not medical advice.
#Health #hearthealth #CovidIsNotOver #LongCovid #longhaulers #NEISvoid #chronicillness
Long COVID-19 and Postural Orthostatic Tachycardia Syndrome- Is Dysautonomia to Be Blamed?…
In Conversation: Long COVID's cardiovascular implications…
Read 21 tweets

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