sarah boothby

We had a prompt response from Pulse Today this morning stating they are investigating & have temporarily removed the program by Miller. We hope they do the right thing

Thank you to all who mobilised swiftly on this esp @kschnickelfritz.bsky.social @michaeltikus.bsky.social Naomi Harvey & MEFoggyDog

We were very lucky with #MaeveInquest GP, Dr Lucy Shenton.
Her experience, as a GP working under NHS contract, led her to leave the profession, traumatised. Traumatised by how colleagues, including Dr David Strain, treated her as well as us.
We were mentally prepared. She had not been.

Clip from BBC Politics North:

A GP describes how #LongCovid ended her career after she needed a wheelchair within a year of contracting the virus.

She says patients are being forgotten by politicians and the NHS as the last dedicated clinic in the area prepares to close.

Photo of Sebastian wearing headphones around his neck and making music from bed. Behind him are two signs: the sign on the left reads, "Tried 30 meds, none worked. #curemecfs," and the sign on the right reads, "Not tired. Sick. #curemecfs."

From his bed, Sebastian creates Drum & Bass 🎶

Two years ago, he was active, sporty, and highly driven. Today, he is around 90% bedbound. He works on music when he can & his work has reached over 1.5 million streams on Spotify. Read Sebastian's story👉 https://ow.ly/n2KZ50YpIqX.

Thanks Adam ⭐

Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention.

Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.

YouTube video by Physics Girl My first science video in 3 years

I cannot describe the joy and happiness I feel seeing Physics Girl posting a new science video on YouTube. The first one in 3 years! She has been suffering from long covid, and is still recovering

youtu.be/B3m3AMRlYfc?...

Study Finds Remote and Hybrid Working Boosts Disabled Workers’ Health

A major UK study has found that remote and hybrid working arrangements are having overwhelmingly positive effects on the health, wellbeing and job retention of Disabled workers — but warns that falling numbers of remote job adverts risk undermining this progress.
tinyurl.com/2v4d9ush

"Success with PEM management is the decrease of PEM" because #PEM is the killer.

#ICanCME2025 Conference - Pre-Conference Session for Occupational Therapists (OTs) This training focuses on occupational therapy practice in the context of post-exertional malaise. The training will cover topics such as: identifying red flags in referrals, screening for post-exertional malaise, how to work with clients toward stabilizing their energy envelope, how to assess for return-to-work capacity. The training will also provide practical examples of assessment and intervention tools, energy conservation strategies, and communication strategies for reports.

Melanie Kasner OT talks about Occupational therapy practice in the context of post-exertional malaise (aimed at OTs) [1h50] starts 4 mins

"A client who returns to work is not a success story. Success with PEM management is the decrease of PEM".
tinyurl.com/4csttxct

1998

💯 agree that the issue is NOT primarily with the hospitals who are working within ridiculous constraints.

@tessamunt.bsky.social

@tessamunt.bsky.social needs better advisors before speaking out against NHS hospitals. Happy to help in confidence.

NHS care for ME now Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.

We are delighted by your appointment and will do everything to help you get it right for #pwME (people with ME)
#LongCovidME (51%+ of Long Covid meets ME criteria)
their family carers
NHS staff doing their best without proper knowledge or advice from their NHS execs

Justice4ME.uk

Personalized fMRI models decode moment-to-moment chronic pain in fibromyalgia Chronic pain affects nearly one in five adults worldwide and remains one of the leading causes of disability. Unlike acute pain triggered by injury, chronic pain often arises spontaneously—without an obvious external cause—and fluctuates across minutes, hours, and days.

Personalized fMRI models can track moment-to-moment fluctuations in chronic pain for individuals with fibromyalgia, highlighting the need for individualized brain-based pain biomarkers. doi.org/hbq9wp

Covid hospitalisations climb as New Zealand enters new wave There’s been an increase in hospitalisations and in wastewater detections, and it’s expected to last another month or two.

Still absolutely adamant you do not want Covid. Long Covid is still a crisis and is the worst health impact I’ve ever personally experienced.
Our health system is much worse than it was in 2020 - you do not want to navigate it with Covid impacts.

Book a booster here: app.bookmyvaccine.health.nz
👇

Given it's Long Covid Awareness month, it would be great to add that each infection and reinfection increases your risk of long term effects.

Please share this around #MedSky. Far too many clinicians are still practicing like it's 2019.

#SciSky #StandUpForScience

🆘 ONLY 25 DAYS UNTIL WE CAN NO LONGER STAY IN THIS MOTEL & I LOSE MY HOUSING VOUCHER AS WELL

I’m disabled & we’ve been homeless 5+ months & the clock is ticking…

Please share & if you know of any single-story rentals in this area, lmk:
#PNW #Redmond #Kirkland #Sammamish #Eastside #SnohomishCounty

📢 @sharonhodgsonmp.bsky.social congratulations!!!!
We want to help you get it right for #pwME (people with Myalgic Encephalomyelitis) & #LongCovidME (51%+ Long Covid meets ME diagnostic criteria).
#ME is not chronic fatigue. The killer symptom is #PEM (post exertional malaise).
Justice4ME.uk

Only two weeks remain to apply for the Paul Foot Award for Investigative and Campaigning Journalism.

Submit your entry by noon, Tuesday 17th March 2026.

➡️ Find out more and apply: private-eye.co.uk/paul-foot-aw...

Hallo Niedersachsen | 22.02.2026 - hier anschauen Bei Hallo Niedersachsen um 19:30 Uhr erfahren Sie alles, was am Tag in Niedersachsen los war.

Link to the original broadcast
Hello Lower Saxony | February 22, 2026
www.ardmediathek.de/video/hallo-...

TW: Assisted Suicide

Clip from German TV. Kim has #MECFS and describes how her illness has progressed, leaving her bedbound and sensitive to light and sound.

At 25, she talks about her decision to apply for assisted suicide, saying she can no longer live like this.

Political support, cross party, has been plentiful.
It's the medical establishment that obstructs any progress. Especially in England.

This treatment is actively being removed by NHS. As if removing treatment that improves quality of life in a chronic, extremely debilitating condition will not contribute to suicidal ideation.
This is the effect of a poorly body badly treated by a national service on the mind.

Treating my low blood volume with weekly IV fluids has improved my quality of life...

While not a cure, educating doctors about our low blood volume could lead to more effective management of #MyalgicEncephalomyelitis.

open.substack.com/pub/colleens...

College has wrecked my daughter's health. The train she takes has sealed windows and no-one wears a mask. At college there aren't any air purifiers and no-one masks. She's missed about 30-35% of her course through sickness and is understandably worried she won't pass her A-levels.

I'm hearing Dalton has resigned.
If ever there was a body less suited to that role . . .
She's done the right thing. Thank you @ashleydaltonmp.bsky.social.
We had the best @theandrewgwynne.bsky.social
Who now?

Socializing, standing, cold

Please contribute #pwME #LongCovidME
Learning from vsME BACME member has noted eating, communicating & moving all provoke #PEM.
For hospitals this information is critical @ashleydaltonmp.bsky.social your staff are failing to give NHS leaders a steer from the NHS frontline.
@laylamoran.bsky.social