sarah boothby

Imho, we need a national service.
Leaving it to local knowledge when there are only 7 clinicians in the entire nation who know how to manage ME (& half of them are retired/elderly) is the definition of how to fail.

Hi Katie - I don't know, sorry. I left Devon (after defending myself through 4 years of being accused by the County Council of causing Maeve's death).
Nurse Seccombe told me they would be reliant on NHS e-Learning for training.

WAMES report of a survey of Health Board's services for ME/CFS is now available: A patchwork of progress, regional variations and gaps. Please pace yourself when reading the report.
We are happy to receive feedback on the services good or bad.
tinyurl.com/y3z3c4y9

PART 2 - Prevalence of Long Covid

Professor Danny Altmann, Immunologist at Imperial College London and Trustee of Long Covid Support, explains why the number of Long Covid cases in the UK is increasing .

#LongCovid #LongCovidAwareness #ProfessorDannyAltmann #LongCovidSupport

Australia www.omf.ngo/melbourne-co...

Avindra Nath, NIH, USA said all that about SARS CoV-2.

400m+ people worldwide, and growing, but it's not the only infection causing #ME.
Overall it's a big and growing market.
Where are the investors?

Germany. USA. Where else?

3/3

'patients with lingering symptoms began arriving in his clinic [in the height of the pandemic]. “They need to seek help. And if their physicians cannot figure it out, they need to find researchers who are looking into these things.”'

2/3

"It’s a drain on society at every single level,” he told me the following April [2021]. “It affects people in their 40s, the most productive years of your life. The economic toll, the psychological toll—every aspect of society it’s going to touch.”

1/3
archive.ph/qBbZJ

@sharonhodgsonmp.bsky.social "new people continue to get Long Covid"
When their symptoms match #ME (also known as ME/CFS but NOT chronic fatigue, mental illness or behavioural problems) NHS staff need to know how to prevent deterioration. They are not yet trained to know this.
Justice4ME.uk

6 years on from Covid, BBC Look North highlights the ongoing impact of #LongCovid. Reporter Cathy Minton says it’s personal, her husband Tom hasn’t improved in a year. He still can’t care for his toddler or go for walks. @franhaddock.bsky.social says new people continue to get long Covid.

Image left side: Text reads, “What wonders would emerge from the earth.” Illustration depicts fiddlehead ferns spiraling in on themselves.  Image right side: The image depicts a forest floor and the trunk of a redwood tree, covered in moss,  mushrooms, and ferns. Text reads, “If juiceless plants were encouraged to flourish?”

I'm grateful for @disabilitylab.bsky.social's new venture, Disability Culture Currents, which explores the intersections of disability identity and culture through opinion, personal essay, and graphic storytelling.

Tonight, I’m feeling so very seen by Robin Larisch's comic “Juiceless.”

& something weird happening in Northern Ireland . . . data collection?

🎯

BBC, ME is NOT chronic fatigue.

@sharonhodgsonmp.bsky.social this loss to NHS primary care was in 2021. All due to NHS executive failures. Nothing has changed since for #ME & #LongCovid.
You can help prevent more good GPs from leaving the profession & we know how to help you help them manage what NHS Execs teach ICBs to ignore.

Progressively Widening Healthcare Costs in Long COVID Over Five Years — Jingya Cheng et al. "The trajectory showed no inflection point suggesting stabilization, even at 60 months of follow-up. This distinction carries important implications for health system planning, as static cost projections based on short-term estimates will substantially underestimate the true economic burden."

Progressively Widening Healthcare Costs in Long COVID Over Five Years

www.medrxiv.org/content/10.6...

Screenshot from latest Science for ME weekly update

#LongCovid #PASC

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.

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

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