Discover and read the best of Twitter Threads about #longhaulers

Most recents (24)

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
🧵Serious Red Flags for the #CISCO21 #LongCovid Study
Researchers please listen to patients concerns & expand your knowledge to the history of #MECFS
You have a chance to stop patient harm
1. No mention of #PEM #PESE in the literature
After repeatedly asking if they screen for #PEM or take this into account - they have not responded in the affirmative.
This is the nub of the issue
75% of #Longhaulers have #PEM
46% are eligible for an #MECFS diagnosis
This means that our bodies cannot process exercise - think sugar diabetes
There is no magic where by giving us exercise because we can't do it means we will magically be able too
Read 16 tweets
If we had followed a zero covid strategy like New Zealand and China, this pandemic could have been under control in 2020.
People have been lied to ("it's just a cold", it's "endemic") and pushed into mass infection, disability, and massive social disruption
We need accountability
And, yes, we knew it was a SARS disease on 31 December 2019, we suspected/knew it was airborne in early 2020, we knew it could cause a pandemic in January 2020, we knew it could affect the "young and healthy" in January 2020, we knew about post viral illness before the pandemic
We knew about SARS sequelae #longSARS before the pandemic, we knew people weren't recovering in "2 weeks" in March 2020, we knew covid wasn't a respiratory disease only in winter to spring 2020, and #LongCovid was an established phenomenon by May 2020
Read 15 tweets
Ich muss jetzt mal etwas zu diesem "LongCovid ist irgendwie Psychosomatik" Bullshit schreiben.

A) Psychosomatik gibt es.

B) LongCovid ist eine postVIRALE Erkrankung und damit NICHT mit Psychosomatik zu erklären.


Warum kommen dann nun plötzlich kleine #Mertens' und #Reichelt|s daher und verbreiten die Mär?

Nun, ist das so schwer zu verstehen?

Mal angenommen, ich hätte großen Einfluss auf das Geschehen in diesem Land, sei es politisch oder medial, und hätte mich 2 Jahre lang

- bei Impfungen quergestellt und Impfungen für Kinder monatelang hinausgezögert und damit Leben auf dem Gewissen gehabt;

Read 10 tweets
Thanks @apresj20 for drawing attention again to the rise of #LongCovid as a grassroots, patient-led scientific ~ advocacy movement in early ~ mid 2020. We changed how covid was understood. We're still fighting for better treatment, recognition and support of all patients 💙 🧵
The story of #LongCovid rise as a patient-made term ~ advocacy movement in early 2020 started with people across the world coming together to challenge early narratives of covid | short, mild, respiratory only esp. in the young

@felicitycallard and I…
Patients were not recovering in the 2--6 weeks recovery timeline that was in the formal guidelines at the time. Many grassroots movements rose in different countries under hashtags like #apresJ20 in France, #covidpersistente in Spain or #longhaulers | by @Amy_Ant | in the US
Read 4 tweets
Mamba 🐍No. 5

🐍"3 patients with recent sequelae (PASC)... fatigue and myalgia of both calves underwent electro physiological examinations, nerve conduction studies (NCS) and electromyography (EMG)...common elements, the presence of a partial or complete conduction block>
on several nerves, slightly prolonged latency of the tibial nerve, and rare or absent F-waves, all suggesting a DEMYELINATING POLYNEUROPATHY due to SC2.
The short duration and low amplitude of the motor unit action potential with early full recruitment on interference pattern on>
EMG typical for myopathy, suggest a direct action of COVID on muscular fibers, especially in the lower limbs.">
Read 19 tweets
#neisvoid DO NOT pay full price for medical bills if you can at all avoid it. You can probably avoid it. (Not always, but worth a shot.) A thread:
The most beginner tip I can give is (if you're able) ask for an "early pay" discount as soon as you get the bill. I've had offices that had never given a discount before do one just because I asked. #LongCovid
Next level: ask if the doctor can code tricky tests or procedures in a way that insurance is more likely to cover. Rifaximin for SIBO is $3k. Rifaximin for diarrhea is totes covered. Correct coding matters. #chronicillness
Read 10 tweets
🧹 Chim Chim Cher-ee 🧹

"Autoimmunity has emerged as a characteristic of the post-COVID syndrome...Latent autoimmunity and polyautoimmunity were found in 83% and 62% of patients, respectively. 3 patients developed an overt autoimmune disease. IgG antibodies against IL-2, CD8B>
and thyroglobulin were found in more than 10% of the patients. Other IgG autoantibodies, such as anti-interferons, were positive in 5–10% of patients. Anti-SARS-CoV-2 IgG antibodies were found in > 85% of patients and were positively correlated with autoantibodies, age, and BMI>
...IgG anti-IFN-λ antibodies were associated with the persistence of respiratory symptoms. In summary, autoimmunity is characteristic of PCS, and latent autoimmunity correlates with humoral response to SARS-CoV-2...In patients with PCS, a proinflammatory state is evident...>
Read 14 tweets
Let's talk about peer support for #LongCovid –– I recently made this handout to help people experiencing Long COVID find a good community that fits their needs.

Here's the PDF via Body Politic's website (it has links embedded):…

A short thread 🧵 1/ A one-page handout titled Community Support for Long COVID w
First, some context: I created this because I have lived experience.

8 years ago I got a virus and never got better. I've been living w/ chronic illnesses many people with Long COVID are now being diagnosed with like #MECFS #Dysautonomia #MCAS and so on, for 8 years.

I've been a part of SO many support groups in my 8 years of being sick/disabled. Online, text chats, whatsapp groups, social media, in-person, you name it––I've done it. I also used to work as a care coordinator/community health worker, so I've got perspective on the topic.
Read 13 tweets
❣️ Jar of Hearts ❣️

"Organ donation from deceased donors with VITT is associated with some risks, such as the PRESENCE OF RETAINED THROMBI IN THE TRANSPLANTED ORGAN AND THE TRANSMISSION OF VITT TO THE RECIPIENT.

Although our patient had normal biochemical parameters>
ultrasonography of the kidneys was normal, we detected an infarction and MICROTHROMBI during further intraluminal blood clot was detected in the liver... The extent of microthrombi and organ function should be carefully assessed before>
deciding whether the organ is suitable for transplantation."

This case shows the challenge presented for blood and organ donation programs with regard to accepting donations from Covid vaxxinees of:
blood, organs, breast milk and fecal matter.>
Read 5 tweets
🚀 The Sweetest Thing 🚀

In SC2, the S1 subunit "fwees off" into plasma space like a rocket booster upon shuttle launch.

[note: "fwees" is an aeronautics term coined by my toddler years ago.]

If it does so in the case of the virus, is it not likely the same for the vaxx?>
"in SCV2, a large fraction of S protein trimers is pre-processed during virion morphogenesis due to the presence of furin protease cleavage site between the S1 and S2 subunits...S protein TRANSITION INTO THE FUSION CONFORMATION MAY BE ACCOMPANIED BY THE SEPARATION OF THE S1>
subunits carrying the receptor-binding domains from the membrane-bound S2 subunits. The fate of the S1 particles shed due to the spontaneous “firing” of some S protein trimers exposed on the virions and on the surface of infected cells has been never investigated.>
Read 10 tweets
Tonight, millions of #Longhaulers were hoping that @POTUS would become a champion for #LongCovid by utilizing his platform to create more awareness & educate the American people about the sheer devastation Long Covid has caused & will continue to cause for decades. He didn't.
We hoped @potus would continue to emphasize mitigation efforts being essential in our battle against #COVID19 & #LongCovid. Instead, Americans were told they could remove their masks as we move back towards a "safer normal" & that those vaccinated & boosted are protected.

For #Longhaulers, there is no "return to normal." We also know that people can still get infected with #COVID19 even if vaccinated. While vaccination helps prevent severe disease during acute infection, we KNOW that #LongCovid most commonly occurs in mild-moderate cases.
Read 18 tweets
Please check out our piece on @NBCNightlyNews tonight!

Awareness & education are key in propelling the #LongCovid & #chronicillness community forward. #Longhaulers in the millions are being failed in healthcare & social supports.

Options have run out. #LongCovidActionNow
We want to thank @NBCNightlyNews @CynthiaMcFadden & @KitRamgopal for highlighting the struggle #longhaulers face trying to access benefits.

We hope to see @POTUS address the devastation of #LongCovid in the upcoming #SOTU address & take immediate action to help millions.
Our founder & president (featured in the story @K_Bishof ) can be reached at or you may check out & contact us through our website or on Facebook
Read 5 tweets
⏳ Foreplay/Long Time ⏳

"...fibrinogen in blood can clot into an anomalous 'amyloid' form of fibrin that (like other β-rich amyloids and prions) is relatively RESISTANT TO PROTEOLYSIS (fibrinolysis). The result, as is strongly manifested in platelet-poor plasma (PPP) of>
individuals with Long COVID, is EXTENSIVE FIBRIN AMYLOID MICROCLOTS that can persist, can entrap other proteins, and that may lead to the production of various AUTOANTIBODIES. These microclots are more-or-less easily measured in PPP with the stain thioflavin T and a simple>
fluorescence microscope...symptoms of LC are multifarious... the ability of these fibrin amyloid microclots (fibrinaloids) to block up capillaries, and thus to limit the passage of red blood cells and hence O2 exchange, can actually underpin the majority of these symptoms>
Read 11 tweets
When you put a Visual Journalist on an important science story you get great visuals and not so great science.🤓

"The exact causes of the illness, known as Long Covid are NOT known."

Yes they are, and have been for over a year.
Around the time @nytimes>
forced the resignation of their experienced science reporter, after a 45 year journalism career, one of the biggest breakthroughs in the understanding of chronic disease was being discussed by @brucep13 and @YoDoctorYo. Using cutting-edge #proteomics they PROVED the existence of>
the S1 subunit of the spike protein in the non-classical monocytes of Long Covid patients. This discovery heralded the opening of a new frontier in the science of chronic diseases like PASC, Post-Lyme, and Me-CFS.
This is a worthy, Nobel-consideration, medical discovery, similar>
Read 7 tweets
The Red Cross, at the "guidance" of the FDA and CDC is urging any vaxxed person to donate blood with
NO DEFERRAL TIME after💉 or booster.

🧵 Why is lack of deferral time concerning? 🧵 Image
Upon💉, the spike protein is released immediately into the blood, and it and the cleaved S1 subunit may stay in the blood of recipients for days before being cleared.
In some people who develop Post Vaxx Long Covid -
PostAcuteSequelaeCovid it stays>
for up to 20 months, i.e. as long as we've been inoculating people. There is a possibility that, without treatment, it stays forever, severely disabling people and shortening lifespans.>……
Read 17 tweets

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