M. and S. Shaw

Person w/ severe #MyalgicEncephalomyelitis #MyalgicE (ME/cfs) #POTS #MCAS & her ME advocate spouse/caregiver. Before: Architect, software interaction designer.

[M. and S. Shaw @twoShaws]

Have you ever wondered what the difference is between post-exertional malaise (PEM) & post-exertional symptom exacerbation (PESE) in myalgic encephalomyelitis (M.E.)? @sunsopeningband explains it in a clear and elegant nutshell.

[Todd Davenport @sunsopeningband]

@rhymeswithvery @MelanieWeckert PESE = symptoms worsen with exertion, says nothing about latency between onset and stressor nor recovery period

PEM = delayed symptoms after stressor, prolonged recovery

PEM is an energy problem. Signs/symptoms also may coincide with dysfunction in a number of other systems.

[Adam @ABrokenBattery]

“It's not just oh you know a bit forgot about, it has been like so drastically forgot about, it's unbelievable”

Former Olympic sprinter @BethDobbin on the neglect of #MECFS and the underfunding of research, comparing £6M for ME with £496M for dementia between 2019 and 2024.

[Carole Bruce @CaroleBruce17]

What a brilliant spokesperson @BethDobbin is for all #pwME It’s tragic that she is having to use her precious energy to campaign for fair funding and attention for #ME. She says all that needs to be said clearly, passionately but without rancour. @andyburnham please hear her now

[BBC Sheffield @BBCSheffield]

Five years ago, Beth Dobbin ran for Great Britain at the Tokyo Olympics. Now, at 32, she spends more than 22 hours a day in bed.

Dobbin has opened up about her ME diagnosis - a chronic disease, causing symptoms such as sleep problems, problems with thinking and memory, pain and severe, persistent fatigue that does not improve with rest.

She has now written to Prime Minister Andy Burnham, alongside 360 other sports people, to urge him to meet with her and fund research.

[Beth Dobbin @BethDobbin]

500 Athlete Signatures 🤩⭐️🏅

We’ve had so much interest since our initial athlete letter to the Prime Minister that we’ve now sent a second letter, this time with 500 athletes backing my call to meet with me and fund ME properly (prev 360).

Huge names including David Moyes (we know Andy’s an Everton fan 👀), Millie Bright & so many stars from a variety of sports 🙏🏼 I can’t tell you how grateful I am to every single one of you!!

Please @andyburnham , take an illness that’s been neglected more than almost anything else seriously 🙏🏼 1.35m people in the country estimated to be impacted, that’s a lot of the vote share!! @UKLabour

I know I owe lots of people replies and thanks, please bear with me and thank you so much again ❤️❤️❤️

[Emma Mitchell 💙 @silverpebble]

Here’s a new find-the-owl photo for you-as ever, looking at the details & patterns, searching and finding the owl will have gentle positive effects on your brain. I’m considering making a find-the-owl calendar. If you’d like one please put a ❤️on this post. A RT would help more folk see it (thankyou x) 🌿🦉

[Carolyn Barber, MD @cbarbermd]

ICE detained USF professor and Bay Area nurse Dr. Ann Lawani at her home and took her away in shackles. That was 8 week ago! A judge blocked her deportation to Nigeria.

She oversees 200+ nursing students. Rep. Harder says she complied with immigration requirements and was moved through multiple states to Louisiana in violation of a court order.

Trump’s ICE says it targets public safety threats. She’s a hospice nurse. https://t.co/maLA9p44mY #BlueSky #MedSky #LawSky #press #ICE #Immigration #BayArea #USF #Nurses
https://t.co/WwVGtM7tid

[M. and S. Shaw @twoShaws]

@hopefullizzy 🫂🌷

[Brain Inflammation Collaborative @BrainInflCollab]

Patients with hypermobile Ehlers-Danlos syndrome (hEDS) face nearly 3x the risk of developing Long COVID, according to a major U.S. nationwide study of 19+ million health records.

Despite similar COVID infection rates, the elevated risk of developing Long COVID was heavily concentrated in hEDS patients who were also diagnosed with:
- POTS
- MCAS
- ME/CFS

The study also found hEDS is far more common than previously thought (~1 in 800 people).

Better screening, earlier diagnosis, and integrated care are urgently needed for this underdiagnosed group.

#hEDS #LongCOVID #POTS #MCAS #EhlersDanlos

Read more: https://t.co/qdA4EOc8IO

[ProPublica @propublica]

1/ By the time veteran John Falchetto made it to his VA hospital, he needed immediate surgery for a burst appendix.

But the OR was closed. A slew of workers had left amid Trump’s overhaul of the VA.

So Falchetto lay there, his life in the balance, for 7 hours… 🧵

[Timothy Snyder @TimothyDSnyder]

Things we used to know about Jim Jordan, just chosen to be minority leader, 1: He was deeply involved in the coup attempt.
https://t.co/SIyYwGqG8d

[Carole Bruce @CaroleBruce17]

@BethDobbin now has 492 signatures from elite athletes on her letter about #ME to the PM. She’s hoping to get it up to 500.

[Brian Fog @useless_priest]

But why does this extremely sick athlete have to do your job for you? Sorry but it’s so bizarre to see this powerful and well-funded organisation rally behind a campaign like this when it won’t address the concerns of its own patient members regarding accountability/tenure.

[Dr. Markus Fraczek @MarekSJF]

Another case of mental-health conditions that have bodily triggers: Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS).

[Marc E. Elias @marceelias]

None of the NYT, WaPo, or Politico mention Jim Jordan’s key role in trying to help Trump overturn 2020 in their stories today on Jordan becoming House GOP leader. NYT says the move “signaled a desire for fresh leadership.”

Subscribe to Democracy Docket. https://t.co/7W0yoPHmq2

[M. and S. Shaw @twoShaws]

@Sabrina_Poirier 🫂🌷

[M. and S. Shaw @twoShaws]

@atranscendedman @drgurner From an ME & #pwME perspective, there’s dis- & mis-information from US federal health agencies; failures of congressional oversight & ⬇️funding; med. textbooks rife w/ medical misinformation about ME; failure to accurately educate & train MDs & nurses about ME, MCAS, POTS, etc.

[Citizens for Ethics @CREWcrew]

Sen. Alan Armstrong pushed for a bill provision limiting states' power to block pipelines—benefitting his former employer, in which he holds tens of millions of dollars in stock.

Just because something isn’t illegal doesn’t mean it’s not corrupt. https://t.co/Ck2zg2Xh8U

[SZ @zpisces2]

I was fighting for my life. I never imagined I’d also have to fight for the right to be properly evaluated.

Severe neurological dysfunction. Devastating post-exertional crashes. Even an appointment with a movement-disorders specialist canceled by another provider. @TJUHospital

And the questions that haunt me: Who shaped the narrative behind my medical referrals? What was communicated, by whom, and how did it influence the care I received? @VirtuaHealth

A referral should open doors—not prejudge the patient walking through them. @VirtuaHealth

Nearly three years later, I’m still living with the consequences. Pacing is survival, not recovery.

How many Long COVID patients have fought this same battle?

Please amplify. We deserve answers.

#LongCovid #MECFS #PEM #longcovidawareness

[Amy Rochlin @amyrochlin]

An important new study in @PLOS Digital Health of nearly 20 million patient records suggests hEDS may be substantially more common than previously recognized and is associated with nearly threefold higher odds of a Long COVID diagnosis.

This intersects directly with a central question we're investigating through CODA Craniocervical Dysfunction Initiative (CODA CCD): Is hypermobility a preexisting vulnerability, an additional consequence of disease, or something more complicated?

Could immune dysfunction contribute to acquired changes in connective tissue, or make existing hypermobility more pronounced? Could infection trigger a process in which inflammation, connective tissue abnormalities, and autonomic and vascular dysfunction reinforce one another?

@ImmunoFever @FranCarrilloPhD

https://t.co/RTfKNRBTjC

[News to Remember @allchronology]

Listen to this. And then listen again. And again. Until you get it.