It's M.E. Linda

Thanks for posting Tina. I have gathered a few more people to follow from their lovely responses to your question! 💙

I am not on 'the other place' as much as I used to be and here even less atm. Limited cognitive capacity currently.

#MECFS
#MyalgicEncephalomyelitis
Please sign all 3 petitions to help #pwME currently in NHS England hospitals

Savannah
Dill
Karen

Remembering Carla too - no news recently 😢

Sign the Petition Save Savannah Victora-May - Prevent Another ME/CFS Tragedy

www.change.org/p/save-savan...

www.change.org/p/the-nhs-mu...

www.change.org/p/save-karen...

This is Isla at age 8.

She died at age 18 with severe ME/CFS.

Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.

Remembered this in case it helps. Matthew Hill was the reporter

BBC File on Four
Transmitted 27.6.2017

Transcript see p12 onwards

news.bbc.co.uk/1/shared/bsp...

Benefits

There has barely been any increase in the number of people claiming benefits if you take into account population growth, aging population, increase in morbidity & pension age rising so it include more people

Not the narrative you hear in media

obr.uk/wtr/welfare-...

Welfare reform bill: Rebel Labour MPs on why they back reasoned amendment - LabourList Here is why some Labour MPs say they are backing an amendment opposing the government's current welfare reform plan.

💷 "We cannot risk a rushed Bill taking money off disabled people."

@louisehaighmp.bsky.social and other Labour MPs on why they are backing an amendment to the welfare reform bill:

labourlist.org/2025/06/welf...

Oh my goodness. Cochrane behaving badly. Worth doing the long read on this one. #medsky #healthpolicy #medtwitter #episky

If governments and organisations attended to indoor air quality, we’d be less reliant on masks to prevent transmission of respiratory infections.

YouTube video by Broken Battery ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)

Please keep watching & sharing this 27min important film on
"The Greatest Medical Scandal" by @abrokenbattery.bsky.social
We need everyone to be watching this
#ME #MEcfs #pwME #LongCovid #MedSky
youtu.be/RiwX9Y0NbiQ?...

37 years ago, but could be in today's newspaper. We still know very little about post-viral syndromes. #COVID just made the number of cases explode, but they always existed. #MECFS #ME

Art by Kristine Paulsen

So grateful that with severe M.E. I still have a tiny bit of mobility to shuffle to the bathroom and kitchen.

I can’t make meals, but I can fetch drinks.

I cling to this mobility baseline. It’s all I’ve got in terms of independence.

I’m terrified of infections. The reality for #pwME

##MECFS

A felt Triceratops decorating a Christmas tree.

My daughter wants to share 12 dinosaurs from our dinosaur 🦖 themed Christmas tree 🎄 in memory of her sister Isla who was fascinated by all things prehistoric.
Dinosaur 1 is a felt Triceratops.
#severeme #mecfs #dinosaurs #siblingloss

Magpie perched on a bird feeder stand looking directly at the camera

15,000 followers here now... never thought this would be possible on Bluesky! 😀
Thank you everyone! 🙏
Here's a recent Magpie in my garden to celebrate. 😁
#Birds 🪶🐦

The inside track on Independent SAGE A summary of the first part of our Nature Protocols paper dealing with the organisation and activities of Independent SAGE.

You can read the summary of the first half of the paper - all about our establishment and organisation on my substack here:
open.substack.com/pub/kityates...

Independent SAGE as an example of effective public dialogue on scientific research - Nature Protocols The members of Independent SAGE reflect on their experience in setting up, developing and running a science communication platform and service to the public during the COVID-19 pandemic

Yesterday we published an article in @natureportfolio.bsky.social's @natprot.bsky.social about the experiences of @independentsage.bsky.social communicating science; from our organisation and establishment to the learning points we took from the process.
1/4
rdcu.be/d3n6s

🧵 #MaeveInquest update. A world first is promised.
NHS England's response states (where they were refusing to discuss commissioning of a specialist service for ME to prevent starvation, which is the best metaphor for #ME and #LongCovid during the inquest) NHS Executive is currently in talks with NHS

Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here.
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social

#Oliverscampaign
Today at 7pm it is #WorldCandleDay where people light a candle for our children in Heaven.
If you light a candle this evening please give a thought for Oliver x

Please also see #MaeveInquest - discussed on the other place - another example where family had to battle the legal system (for inquests) alone & spend their own funds whilst NHS, local Council (ASC) & GP surgery all had publicly funded barristers
#TimeForChange
#MyalgicEncephalomyelitis
#MEKills

I’ve spent 7 years convincing the NHS paracetamol killed my wife An army veteran who says his six-stone partner was repeatedly overdosed in hospital has put £80,000 into his fight prove failings led to her death

Every day last week I attended the inquest into the death of 30-year-old Laura Higginson. It has taken her husband Antony 7.5 years, 4 coroners & £80k to expose how she was repeatedly overdosed with paracetamol by NHS staff.

The inquest was jaw dropping.

Read: www.thetimes.com/article/22ec...

Most teenagers recover from long Covid after two years, study shows World’s largest ‘longitudinal cohort study’ reports that older teens and society’s most disadvantaged most likely to be affected

The most spectacular use of the word “most” to minimise a disease that persisted at two years in 30% of all kids that had symptoms at three months.

That is a massive number of kids *not recovered*.

www.theguardian.com/world/2024/d...

🧵 #MaeveInquest update - 4/6 institutions responded to the Coroner's Prevention of Future Deaths report at 5pm yesterday. MRC & NiHR have until midnight to meet their obligation to #ME. Current (conservative) estimate 700,000 in the UK.
Publication on the Chief Coroner's website in 'due course'.

@teamlabouruk.bsky.social as a healthy 36yo I worked 17hr days for weeks at a time leading responses to Covid outbreaks as a senior Dr.

Now severely disabled by long covid at 40, according to my Government I’m “written off”. With 1.3million+ of us why do we not have dedicated research funding&care?

That was scary! 🤗🤗🤗

I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.

🚨Contrary to information about #LongCovid clinics regularly spouted by the Government, what we know to be true was backed-up by Prof Evans at the UK Covid Inquiry:

“Some have very sadly stopped altogether…Probably are few that are really running as the NHS England service specification suggests”

Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot Chronic fatigue syndrome is as physiological as a broken leg. ​We must learn all we can from this tragic case, says Guardian columnist George Monbiot

1. Abuse and harassment are never acceptable. But this is not the first time I’ve seen an emphasis on abuse and harassment shielding bad science. This is a short thread on how it works.
www.theguardian.com/commentisfre...