Julie Strack

Health writer and communicator. Patient with #LongCovid since March 2020.

[Julie Sullivan @CureLongCovid]

Medication categories for dysautonomia: Treatment depends on the subtype and the underlying physiology of the autonomic dysfunction.
Here are the main groups:
1/

[Michael Stingl @neurostingl]

Hier wird wieder einmal ein Grund geliefert, warum Trainingstherapie bei ME/CFS kontraproduktiv ist, egal was Leute, die PEM nicht verstehen, behaupten.

Es kommt zu einer messbar pathologischen Reaktion auf körperliche Aktivität.

[Eric Feigl-Ding @DrEricDing]

Future vaccine…. Epstein-Barr Virus, which causes certain cancers, and very likely causes MS (multiple sclerosis), now implicated to also likely cause lupus. If we can develop an EBV vaccine someday, it could prevent so much suffering.

[Prof. Akiko Iwasaki @VirusesImmunity]

A groundbreaking paper by @younis_sh1 et al. @stanfordimmuno provides an answer to the long-standing question about how EBV infections are linked to lupus. A short thread to explain the key findings. (1/)
https://t.co/dUpz19IjEv

[PolyBio @polybioRF]

We’re excited that Dr. Akiko Iwasaki—a member of our long COVID consortium—gave such an excellent AMA talk on recent developments in #LongCovid. She refers to several RCTs underway, including the PolyBio-supported trial of Miraviroc & Truvada at @CoRESinai.

https://t.co/E2SsBjOKyY

[Putrino Lab @PutrinoLab]

I know today is a frightening day for many with #LongCOVID, #MECFS, chronic #lyme and other infection-associated chronic conditions. Today, all I can offer is a small piece of advice and a small piece of reassurance. Advice: please take care of yourselves and practice some 1/

[Vlad Vexler @VladVexler]

Severe ME is lying in darkness wondering how you can be so ill without being dead, while the world stymies medical research that will make you better. Severe ME patients are the most socially abandoned group I can think of in the Western world. Millions of them.

#SevereMEday

[Hannah Davis @ahandvanish]

They need 1000 responses before they can start analyzing! It is a long survey but will have high impact - please fill it in if you haven’t already! They recently made some updates to make it easier. #longcovid

[Putrino Lab @PutrinoLab]

I’ve been fortunate enough to have some time to stand back and reflect on the state of the field of post-acute infection syndromes(PAIS)/infection associated chronic conditions (IACC) such as #LongCOVID, #MECFS and chronic #Lyme and I wanted to share some opinions. Before I 1/

[Covid Caution - BA.3.2, XFG, LF.7, LP.8.1 @CovidCaution]

I'll keep reposting this every time I see it. If an up-to-date piece from Yale School of Public Health about immune dysregulation isn't good enough for you, I don't know what to tell ya.

[Dana Ludwig @danaludwig]

Oops! Cat is out of the bag. Most of us have complained that Covid isolation of 24 hours is too short. Now someone actually collected data. The MEDIAN time for Covid recovery is 20 DAYS! MEDIAN excludes all the LC cases (worst 22.3%). 50%, not 95% recovered in 20 days.

[Diane O'Leary, PhD @DianeOLeary]

For those convinced that female hysteria is a thing of the past - look. Outside of MH care, ppl think hysteria was rejected long ago as a grossly sexist physical threat to women w disease. Inside MH care, it's "Hey this great book from the 80s helps you treat hysterical women!"

[Julie Strack @juliestrack]

@Dakota_150 @MrkStdngr Of course! I just followed you, so you should be able to DM now.

[���️Dr.T, PhD @chydorina]

The straw(s) that broke the camels back

Chronic illness and post-viral syndromes do not come on overnight.

It might 'seem' like it - indeed, many of us can remember the precipitating event but the reality is that we were laying the ground work for chronic illness before the 'event' happened.

When we look at the distribution of who gets sick - some trends stand out. Middle-aged women (often in high stress roles -work or family), athletes (both male and female), high performers in general.

Sure, kids can get sick and so can teens and young people but when you look at the health history you often see EVB (mono) and other infectious diseases pop up. There is often a history of allergy or asthma. In adults pre-existing lung pathology from infections and heart attacks can sometimes set the stage.

I often say recovery is not just a matter of turning around and retracing the steps of illness and in many ways this is true. The processes of healing are not the same as the processes of pathology.

BUT - when you open your viewfinder wider and consider your health history in general - from being born by caesarian or bottle fed as a baby (which can affect our immune systems) you can start to put together the clues for what primed your system to be vulnerable.

This may not be true for everyone but for many of us a virus was the last straw - many previous hits had been layered on already that compromised resilience.

Human bodies are marvels of being able to handle incredible abuse and still keep going - but there is always a tipping point beyond which function cannot be maintained.

Dont try and go backwards to what you remember health to be like. For most of us we are remembering a time when we were functioning but already laying the groundwork for being vulnerable.

Many of those straws can be removed in time. And even if the final trigger has no viable solutions yet (i.e. persistent pathogens) it does not mean symptom management and treatment will not help.

Start low. Go slow. Be gentle. 1% and 5% improvements are a big deal.

[betsy ladyzhets 📊 @betsyladyzhets]

I just finished livetweeting the Senate #HELPLongCovid hearing, see the thread below. I'm also working on a recap article for @thesicktimes -- send me your thoughts/comments here or at [email protected]!

[Patient-Led Research Collaborative @patientled]

Good morning! We’re live tweeting today’s hearing on Long Covid from the Senate Health, Education, Labor & Pensions Committee.

Follow this thread – or watch the live stream here: https://t.co/vJuKtVpPF3

#LongCovid 1/

[The Sick Times @thesicktimes]

📢 BREAKING: There will be a full U.S. Senate HELP Committee meeting on Long Covid, January 18th at 10am EST. Look for more details on the hearing and coverage from us.

https://t.co/BLQKtcXlD3

[Monica Verduzco-Gutierrez, MD @MVGutierrezMD]

In a Facebook group of physicians, someone brought up the topic of #LongCOVID due to their own fatigue/PEM. MANY chimed in with similar.
Reminded me I need to continue Long COVID education for colleagues. Also, one doc had never heard of POTS. Read the post & realized she had it