Online mini survey results on Long Covid patients regarding their most prominent symptoms:

Participants: 747
- Fatigue: 59%
- Brain fog: 14%
- Pain: 13%
- Other: 14%
#LongCovid #MECFS

If you have #POTS and live in the US, please ask your doctors to use the POTS ICD code in your medical chart. The POTS ICD code is G90.A. Download a letter about the new ICD code for your doctors at dysautonomiainternational.org/pdf/ICDProvide…

Just got my order of Alice Wong 王美華 Disability Intimacy 🤓 — the longer I live with #LongCovid & disability, the more the mission of Alice Wong feels so critical to everything we’re fighting for.

Asserting our experience into our culture is so key to changing minds.

It is so lovely and refreshing when good things happen. Really happy to hear this.

Just out in Emerging Infectious Diseases: Highly pathogenic avian influenza H5N1 virus infects epithelial cells of mammary alveoli (where milk is produced) of the udder in dairy cows. #vogelgriep 1/2
wwwnc.cdc.gov/eid/article/30…

‘Both disorders are associated with the formation of fibrous amyloid clots and hyperactivated platelets but, while these changes are prominent in LC, they have only been identified in a subset of ME/CFS patients.’ cell.com/trends/molecul…

How thrilling to see this online after 8 years in the works!!!

We showed that #Lyme bacteria
mimic our own“don’t eat me” signal with their P66 protein to hide in plain sight!!! This tricks our SIRPa protein to trigger the breaks on immune clearance!
biorxiv.org/content/10.110…

So excited to share this story with the world! A mimic of the mammalian ‘don’t eat me’ signal CD47 encoded by a pathogen!

This is a very common problem in the #LongCovid and #MECFS community.

One of the hypotheses for the transition from acute to chronic illness in #MECFS #LongCovid and similar conditions is that the immune system gets 'stuck' ON and all the stuff that goes wrong (downstream) is a consequences of this initial 'block'.

Un-blocking it and getting it to

🧵
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by reposting and/or liking this image.

Day 1

#MEcfs #CFS #PwME

Provider-oriented & patient-accessible!

These webinars ( at least 4!) will be led by Dr. Peter Rowe & include a lived experience segment.

There will be a capstone webinar made up of a Q & A segment.

Please submit questions to: [email protected].

In this #MedEd webinar you will
1) Learn evidence-based options for treating ME/CFS
2) Understand IOM diagnostic criteria/evidence behind criteria
3) Understand clinical presentation, epidemiology, and impact of pediatric ME/CFS
4) Learn evidence-based options for treating ME/CFS

Thurs, May 9th @ 1pm.
#MEActionMaryland will facilitate a pre-recorded webinar series:
'The Pediatric ME (Myalgic Encephalomyelitis) Webinar Series by
Dr. Peter Rowe:
“Evidence-Based Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome #MECFS '

Really exciting & so important! So many media outlets & journalists have completely abandoned their duty to report on #LongCovid & hold folks accountable on this issue. Having an entire outlet & team dedicated to this is so huge.. congrats Miles W. Griffis & betsy ladyzhets 📊 👏🙏

Y’all, I can’t.

Mile 9: “my gut hurts so bad!”
Mile 15: “I’m cramping so bad.”
Literally rolling away in a wheelchair at the end of the marathon.

Idk who needs to hear this besides this creator but REST AND STAY HOME WHEN YOU’RE SICK.

« I used to run twice a week, now I need a mobility scooter: The frontline medics who caught coronavirus at work but are now crippled by long Covid and fighting for damages » dailymail.co.uk/health/article…

Really feel like I’m going insane with the severe head pressure and pain, dissociation (feeling like I’m in a dream, out of touch with reality), and anxiety (feeling like world is about to end). It has been the worst 3 days of my life. When will this end? #LongCovid