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.

[Elisabeth Klaar @lammas_leaves]

New update about Savannah who has #ME #MECFS #VerySevereME and is in a desperate situation in hospital in the UK. Link in next tweet.

Sign an open letter to ME Association and Action for ME demanding they ACT NOW to support her and ME patients in crisis!

https://t.co/pgfIdJkY4D

[Long Covid Advocacy 💙 @LongCovidAdvoc]

@andyburnham ✍️ If you wish to go free form here's a direct link to the form.
https://t.co/h5fzAeKxRv

[Long Covid Advocacy 💙 @LongCovidAdvoc]

@andyburnham 🖇️✍️ Link to text to copy & paste, also includes link to the Guardian form. They are looking to publish ideas & comment.
https://t.co/2pKlcncX5l

[Long Covid Advocacy 💙 @LongCovidAdvoc]

💌Our statement

📣Have your say on @andyburnham 's 10 yr plan & ensure the voice of people affected by Long Covid & ME are heard.

The Guardian has an open form & are taking opinion. This is a fab op for the community.

We have a template you can copy & paste!
🖇️ to text & form👇

[Hillary Johnson Author, Journalist @oslersweb]

1) Significantly more American citizens have been diagnosed with Myalgic Encephalomyelitis--3.3 million--than the number of Americans who serve worldwide in the US military--2.81 million.
(A 2023 analysis of health insurance claims revealed 3.3 million diagnoses by MDs per CDC)

[Hillary Johnson Author, Journalist @oslersweb]

2) The 3.3 million figure measures diagnosed sufferers only. Because medical schools do not include the disease in their curricula, most doctors lack the training to recognize ME or make the diagnosis. The number of Americans currently disabled by ME assumed to be vastly higher.

[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.”

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