Apparently.... Indefinitely 🤷🏻‍♂️

There is still time to register for tomorrow’s ME Voices Wales self-management webinar: Wed 22 April 12.30-1.30pm

ABUHB's Symptom Management service will explain what support they can give people with ME/CFS.

Register here: tinyurl.com/mwkvbnp9

A new chapter in ME/CFS treatment research begins today—and your voice is essential to making it count. - Open Medicine Foundation Learn more about CTN Lite, a research model designed to accelerate ME/CFS treatment trials and expand access.

OMF launches CTN Lite, a streamlined research model that allows OMF to launch meaningful treatment trials faster, without compromising scientific rigor and excellence. Take the Survey.
Takes 20 mins to complete. Closes 15 May.
tinyurl.com/4hhpr2zz

In Pursuit of Understanding the Crash What Post-Exertional Physiology Tells Us About ME/CFS

"Recovery-focused studies show ME/CFS patients report return-to-baseline times averaging nearly two weeks after a standardized physical exertion compared with around 48 hours in healthy, deconditioned controls."
likeannopeningbandforthesun.substack.com/p/in-pursuit...

I go inside to seek refuge from the noises. But the internal vibration never ceases. It is as if I have a pair of buzzing bees inhabiting my ears. Tinnitus is merely one of the inescapable symptoms of my ME/CFS and Long COVID.

"You can’t bully your body into producing energy it doesn’t have. You can’t intimidate PEM into not happening."

#justice4me.uk campaign mssg: thanks for impressive response to time limited call. We appreciate every contribution & the risk of PEM associated. We are with you in this.
I say, systemic failure is not easily changed but the change needed is small and easily made @sharonhodgsonmp.bsky.social meet me

#justice4me.uk campaign mssg: thanks for impressive response to time limited call. We appreciate every contribution & the risk of PEM associated. We are with you in this.
I say, systemic failure is not easily changed but the change needed is small and easily made @sharonhodgsonmp.bsky.social meet me

"Collaboration for Change" - Newry March 2026 Professor Chris Ponting YouTube video by Hope4MEFibroNI

Thank you Sarah, I’ve found it on Hope4MEFibroNI’s YT channel youtu.be/KHxzn3VFevw?...

Two other big findings: those with early onset were much more likely to be severe or very severe (odds ratio 2.4) and those with close relatives with ME/CFS we're more likely to have early onset.

Check @abrokenbattery.bsky.social Broken Battery on YouTube for what's available

I refer you to my earlier reply.
Why would the civil service change the habits that gave us Brexit?

Limited hard copies available of the novels to order:

Please share with your networks - get them into clinics/ waiting rooms, youth centres, schools and anywhere a young person might need them to be.

www.lshtm.ac.uk/research/cen...

#GraphicNovel #LongCovid #Research #Resources

We hope these graphic novels will help reduce stigma, provide education and self advocacy tools to support children, especially those without supportive networks. These novels also have the power to educate professionals hon how CYP with LC feel, taken the burden away from young shoulders.
#Children

Live from the @uoftcovidrehab.bsky.social Forum Tim Rhodes shares research on How Young People’s Social Worlds Alter With Long Covid.

Lean more about COVID Made Long: www.longcovidkids.org/post/covid-m...

#COVIDrehab #LongCovidKids #LongCovid #YoungPeople

Hurry, hurry. Less than 2 weeks to go before the deadline for in-person registration to the Young EMERG symposium for early career researchers in ME/CFS (25th & 26th May), Hinxton Hall, Cambridge #pwME #MEcfs

Trial By Error: Final (Berkeley) Chapter 2026 Help UC Berkeley raise $75,000 for the project: Trial By Error: Final (Berkeley) Chapter 2026. Your gift will make a difference!

Berkeley's final crowdfunder for Trial By Error has almost reached 150 donations and 25% of the goal!!!

crowdfund.berkeley.edu/project/49720

Also, that there is cross party finding of obstructing Government by senior civil servants.
I witnessed such an attempt in my meeting with the Minister after #MaeveInquest.
Politicians are elected and serve as long as we/their party lets them. Civil servants are on a gravy train controlling info.

UK agency finds stark inequalities in health protection Chances of hospital admission with infectious disease strongly linked to factors such as ethnicity and deprivation, report says

‘People living in the 20% most deprived areas in England are almost twice as likely to be admitted to hospital due to infectious diseases than the least deprived.’

Health inequalities are structural and interlinked with social factors such as poverty, housing and employment
on.ft.com/42GYjhH

It's been three and a half decades since I contracted the flu, probably a virus, that stole my active life. I got sick & never recovered. Today is my M.E. anniversary, my "sickiversary." People with Long COVID are only beginning a journey that for me has lasted 35 years. #millionsmissing

Clinical care guide for managing ME/CFS and Long COVID, A Decade of Expertise offering patient guidance.

Over a decade of clinical expertise, distilled into one guide. BHC’s Clinical Care Guide is a practical roadmap for navigating ME/CFS, Long COVID, fibromyalgia & related conditions. Free to download, free to share. 💙 

Download: https://bit.ly/4jScKFu

#MERC @openmedf.bsky.social.

Calling for people to sign up to the AusME registry. Person completing a form on a clipboard "Nobody knows ME/CFS and long COVID like those who live with it"

If you’re living with ME/CFS, long COVID, or want to volunteer as a ‘healthy control’ for medical research studies, becoming an AusME Registry participant is the simplest way to get involved in research!

Sign up today and make a difference!
zurl.co/OZVrV

Ty! I'm offline 9-9 everyday so I hope others will fill in the gaps

Bluesky does not give me that option, sorry. If you email admin@justice4me.uk someone will send you a Word or .PDF version by reply.
No pressure tho. No guaranteed outcome. Not worth risking PEM for. Take good care of yourself first xx

able. Not by you - or me; by us all, together, as mindful people.
Worldwide neglect of ME has led to too many preventable deaths. This is not acceptable. Collective guilt is the appropriate response, it's what leads to reparation. @alastaircampbell2.bsky.social will be more eloquent on this.
2/2

Interview with Julie Rehmeyer about her NY Times' Modern Love piece YouTube video by David M Tuller

youtu.be/DXeR5JaPd6w?...
Thank you @davetuller1.bsky.social @julierehmeyer.bsky.social for this. It's lovely to hear your voice Julie, and the context of a 'modern love story' from here.
Fwiw, I think we should feel collective guilt about every suicide. Beth's death was premature and prevent-
1/2

Unpaid carers impacted by unclear guidance to have debts cancelled Tens of thousands of unpaid carers affected by confusing guidance on their earnings are set to have their debts reduced, cancelled, or refunded, in a major reassessment of cases launched by the govern...

Uk government to cancel/review debts of unpaid carers
www.gov.uk/government/n...

No. Brevity is asked for.

I don't know what the legal advice will be, but I understand evidence is to demonstrate the scale of the risk.
There's no guarantee of success so if you're feeling doubtful, sleep on it. Friday is a few days away yet xx

It's to be collated and used for legal purposes, ie lawyer-lawyer. Nothing identifying will be included. Campaign admin (1 - 2: pwME and/or carer) only will see email. Original data will not be stored after collating.