Saumyaa

@AstraZeneca Cell and Gene Therapy I NGS I single cell transcriptomics I Immunology I @Stanford postdoc I sci-comm @tasteofsciSF

[charlos @loscharlos]

“I was initially diagnosed with #MECFS 10 years ago..

I was unresponsive to everything until beginning rapamycin treatment, 6 mg once weekly in December 2021. I noticed an improvement in 3 weeks and by 6 weeks I was in remission.” https://t.co/a6MGAw4Cc0

[PolyBio @polybioRF]

We are excited to announce an $800,000 donation to Mount Sinai to support a clinical trial of the drug rapamycin in patients with long COVID. The trial will be conducted at CoRE: a clinic directed by Dr. David Putrino and PolyBio's Dr. Amy Proal:
https://t.co/oAcPFtyne8

[Erin C. Sanders, MSN, WHNP-BC (She/Her) @ErinSandersNP]

Only after becoming chronically ill & severely disabled myself, did I truly realize how extremely inept, incompetent, utterly unwilling to learn or unlearn concepts, & just plain cruel the vast majority of my fellow healthcare professionals were to patients. Shame on you.

[UniteToFight @U2Fight_World]

Three Words That Make the Difference

Very severe #MECFS can mean being able to listen to only three words a day. For someone with this condition, it means lying in a darkened room, isolated from the world. Day in, day out. Week after week, month after month, year after year.

These three words separate a good day from a bad day.

From the outside, the conditions in which people like Mila Hermisson live seem too cruel and unbelievable—and they are. It’s simply beyond comprehension. It is crucial for the public to recognize the immense suffering this disease causes, both for those affected and their caregivers. We, as a society, can help alleviate this suffering. All it takes is a commitment to listen, learn, raise awareness, and take action to address and prevent the disease.

However, alongside education, research is the most critical area where urgent progress must be made. We are doing our small part to amplify these voices.

[Michal Tal, PhD @ImmunoFever]

'Tis the season! We're looking to capture those early cases of Lyme disease to help us get a better understanding of the disease. Please help spread the word about our study!

[Saumyaa @saumyaa20]

Finally!!

[John maxwell (ジョン) @Twitjpm]

@CureLongCovid This article equating long concussion with ling COVID really made sense to me.

I always described my symptoms as brain damage.

It doesn't seem to have been shared much outside UK, may be if some interest to you.

#

https://t.co/xGtFnIxmrm

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

Dr. @zalaly's study and comment below are VERY IMPORTANT. Some of us have been saying for decades that post-acute infection syndromes, including #MECFS, #Dysautonomia and "chronic Lyme" are REAL and not due to anxiety, stress, deconditioning or FND. These syndromes were triggered by infection, which resulted in #chronicillness and disability for millions of people before #Covid pandemic. This phenomenon is not new: what IS new is the massive numbers of individuals now impacted by these syndromes after SARS-CoV-2 infection, making #LongCovid and all post-acute infection syndromes a major #PublicHealth issue.

#MedTwitter #NeuroTwitter #BrainHealth

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

Similar studies have been done before the pandemic on patients with chronic pain and diagnosis of "fibromyalgia" and patients with certain types of autonomic disorders. I think based on the current and past evidence, it is safe to conclude that #autoimmunity plays a major role in the pathophysiology of many complex chronic disorders, including #LongCovid.

#NeuroTwitter #MedTwitter

[Saumyaa @saumyaa20]

Wow

[Eric Topol @EricTopol]

What happens when you transfer IgG antibodies from people with #LongCovid to mice?
https://t.co/W0e4Km941s
The mice develop pronounced and persistent sensory hypersensitivity, reduced locomotor activity, related to human plasma proteomic signature

[Saumyaa @saumyaa20]

Mind blowing!

[Jeroen den Dunnen @DrDenDunnen]

Interestingly, antibodies from different patient-groups induced different symptoms in mice! Group-yellow IgG immediately induced pain symptoms, group-red induced delayed symptoms. Remarkable: group-grey IgG induced no pain, but was the only group to induce immobility. 7/11

[Jeroen den Dunnen @DrDenDunnen]

A strong indication for #autoimmunity in #longcovid: transfer of antibodies of patients induces symptoms in mice. Check out our latest preprint @biorxivpreprint: https://t.co/c9I3ZKEEIF 1/11

[Eric Topol @EricTopol]

Today the first 3-year follow-up of #LongCovid for outcomes @NatureMedicine https://t.co/Pee1HzJUPn
@zalaly and I review the findings along w/ several relevant new reports and current status in the new Ground Truths
+ Ziyad's🧵on the new report
https://t.co/1CMKghlZZl

[Ziyad Al-Aly, MD @zalaly]

📣 New paper in @NatureMedicine

Three-year outcomes of post-acute sequelae
of COVID-19

By Miao Cai @Biostayan @EricTopol and me

A 🧵

https://t.co/6UBj0MgAYQ

[Ziyad Al-Aly, MD @zalaly]

In hospitalized patients

🚨Risk of death declined over time, but remained elevated even 3 years after infection

🚨Risk of new post acute sequelae declined over time, but significant risk remained even at 3 years in nearly all organ systems - cardiovascular, neurologic, GI, coagulation and pulmonary organ systems

https://t.co/bAwoIGkdVy

[Ziyad Al-Aly, MD @zalaly]

The big revelation here is that the risk persists for 3 years in several organ systems (e.g. GI and nervous system) even 3 years after a mild infection.

Healthcare professionals are taught that acute infections as short-term events with health effects that manifest around the time of infection.

The data challenges those teachings and shows that mild Covid can still cause health effects even 3 years later.

Acute infections can have long-term health effects.

Covid continues to teach us something new at every turn and this is one very important new lesson.

https://t.co/bAwoIGkdVy

[Ziyad Al-Aly, MD @zalaly]

Why is this be happening?

Possibly viral persistence (perhaps far more common than most people think), chronic inflammation or chronic immune dysfunction or all the above.

https://t.co/6UBj0MgAYQ

[Ziyad Al-Aly, MD @zalaly]

While I talked about hospitalization in the previous tweet, I want to make it clear that most people with Long Covid had mild COVID-19.

In fact, 90% of people with Long Covid had mild
COVID-19.

https://t.co/6UBj0MgAYQ

[Saumyaa @saumyaa20]

@ImmunoFever @ColleenCNYC @PutrinoLab But I hope some of strategies to tackle it might also help PCS community. Many of symptoms overlap.

[Saumyaa @saumyaa20]

@ImmunoFever @ColleenCNYC @PutrinoLab Add post concussion syndrome patients to the list too. Hoping your and long covid research research has some cross impact on our community too, as they all have the backdrop of chronic unresolved neuroinflammation. I know triggers are very different, infection vs physical injury.

[Michal Tal, PhD @ImmunoFever]

Thank you so much @ColleenCNYC for this incredibly important piece and for also incorporating my late edits!!!
With fantastic quotes from @PutrinoLab and one of my unofficial mentors, Bill Robinson (who adopted me back at Stanford like one of his own)
https://t.co/7WvEx3zSrH