TW: Update on Savannah via GoFundMe: Donations have now funded legal action. Sonya Chowdhury (CEO Action for ME) has briefed a solicitor as well as Savannah’s MP. I’ve donated again.
Also includes a diary style update of her experience in hospital.
www.gofundme.com/f/severemerg...
@actionforme.bsky.social & @meassociation.org.uk Where are you?
The charities should employ an advocacy worker to liase with hospitals & trusts, to help very ill patients get the care they need.
🚨 One week left to contribute to ME research and fill in our 2025/26 Big Survey!
If you've got ME or ME-like symptoms as part of long Covid, we want to hear from you 🙏
🔗 Take part, and find out more: www.actionforme.org.uk/research-cam...
Thank you!
URGENT:
An NHS hospital is starving a severe ME patient & has now stopped giving her fluids. Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk. @h-sharland.bsky.social has the story
www.thecanary.co/uk/analysis/...
I have no desire to talk offline. Everything about ME should be out in the open.
If I hadn't challenged you out in the open like this I would never have known that Wessely threatened to sue you. Suspected, of course, because it is his M.O.
But the longer ME keeps being discussed under NDA;
🚨New survey alert 🚨
The experiences of healthcare professionals living with Long COVID (with PEM) and/or ME
All information can be found on the landing page here.
www.physiosforme.com/hcpwithmesur...
Lord Falconer mentions Oregon’s annual reports on assisted suicide.
He doesn’t tell Peers that those same reports reveal:
• deaths approved for anorexia, arthritis and diabetes
• one person took over 5 days to die
• nearly half say they feel like a burden as a motivation
@tomshakespeare.bsky.social
Lets see the data to support this wild claim
@TommyShakes
He is the only person I have heard say "the majority of disabled people support assisted dying"
@UKHouseofLords Lets see the data
Burning of wood and coal in homes contributes to almost 2500 deaths a year. Stopping unnecessary burning would save the NHS millions of pounds, but current laws fail to address the problem. See piece by Sally Howard for @bmj.com
www.bmj.com/content/391/...
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...
I've made a new list on @bookshop.org of books that explore nature / walking / the outdoors by disabled, neurodivergent and chronically ill writers - Nature Beyond Cure - aka our own narratives are messy and complex. Do share! #BookSky #DisabledWriters
uk.bookshop.org/lists/nature...?
Motability scheme As someone who has suffered from severe ME/CFS for more than 30 years, I can relate to Sir Ed Davey’s feelings of betrayal in having to list all the things his son can’t do when applying for the Motability scheme (news review, May 11). Because my condition was not classified as permanent, in the first ten years I was unwell I had to complete two long forms every six months to receive sickness and disability benefits. It is hard to convey the depths of despair I felt in having to use so much of my limited capacity to detail every thing I was unable to do, over and over again. As political rhetoric against people on disability benefits increases, I await another assessment with a familiar sense of dread. Robert Saunders Balcombe, W Sussex
My letter in the Sunday Times on the cruelty and despair of claiming incapacity benefits with severe ME/CFS: www.thetimes.com/article/7ca7...
Written in response to this article by @eddavey.libdems.org.uk: www.thetimes.com/uk/politics/...
Archive copy: archive.ph/YSEuk
We are outside Parliament today protesting the bill and the devastating impacts it could have on Disabled people.
We’re here with Liz Carr, actor and activist with Not Dead Yet UK, speaking about why she’s opposed to the Assisted Dying Bill.
Naive. Please listen to disabled peoples organisations.
Image of young scientist with a background ofbiomedical research imagery in a research laboratory
Apply by 31 March
𝙄𝙣𝙫𝙚𝙨𝙩 𝙞𝙣 𝙈𝙀 𝙍𝙚𝙨𝙚𝙖𝙧𝙘𝙝 𝙎𝙪𝙢𝙢𝙚𝙧 𝙎𝙩𝙪𝙙𝙚𝙣𝙩 𝘽𝙪𝙧𝙨𝙖𝙧𝙞𝙚𝙨
Three 8-week bursaries available for undergraduate students to gain practical experience of working in a research laboratory - agreat opportunity to gain real knowledge of #MECFS
investinme.org/iimer-newsle...
#research #MedEd
Drastic cuts to PIP will affect as many as 1 million disabled and ill people, pushing them into severe hardship, worsening physical and mental health, and isolation. There is no credible argument for pulling help from people shouldering the high costs of disability. Cruelty dressed up as reform.
This is a seminal moment: a Labour government cutting disability benefits. Not just continuing Tory levels. Cutting.
This comes after a week of speculation, itself an act of cruelty by a government toying with people’s dignity.
These cuts are disgraceful - and they will cost lives.
Model of a human brain on a blue plate.
How are vitamin B12 and brain ageing connected? 🧠💊 🧠💊
This #BrainAwarenessWeek, we’re sharing new evidence suggesting current recommended vitamin B12 levels may not be high enough to counter cognitive decline with age 📉
Read more ⤵️
buff.ly/Cg8r5av
Female colleagues should never be expected to share changing facilities with male colleagues regardless of how they identify. It's wrong, and unlawful.
But that's what happened to Sandie Peggie, a nurse working for NHS Fife. Today's Observer column.
www.theguardian.com/commentisfre...
Area chart showing ME funding (£6m) vs. MS, IBD and Parkinson's by the UK Government, 2015-20
A comparison of UK Government research funding for ME/CFS compared to other diseases like MS, IBD and Parkinson's 🧐
@nihr.bsky.social and @ukri.org we need ring-fenced funding for ME as part of the Delivery Plan
Thank you to @mediumwhite.bsky.social & co. for analysis
#MECFS #NHS
Our take on Tom Shakespeare and co's letter supporting assisted suicide: he speaks only for a minority of privileged disabled people. Rushing to law when the basics are unknown is folly. A Royal Commission is the right way forward.
buds.org.uk/buds-respons...
Charlotte and Olly standing by table with a tagine.
Charlotte and Olly leaning on sides of a circular kiln in Charlotte's studio.
It was a pleasure to meet Charlotte Storrs, who creates fabulous designs in Culham,
She shared #GPSR challenges faced by #craft businesses who sell in Europe. It requires companies outside Europe to identify a “responsible person” & more, or face bans & fines
Out now, #MECFS, #LongCovid, and related news, advocacy and research from w/c 13th Jan in our latest News in Brief post.
Headlines and links to further reading for:
News, articles and advocacy
Research news and commentary
& Published research
www.s4me.info/threads/news...
The acknowledgement of an email received at the Citizen’s Enquiries Unit at the European Parliament in which I note some of my concerns about the impact of the unachievable documentation requirements on artists, artisanal crafters and secondhand sellers selling one-off and handmade items.
If you are an artist, artisanal crafter, or even a seller of secondhand goods in the EU, the #GPSR applies. The materials documentation requirements for artworks, handmade items, secondhand items are unworkable.
Please do write to the European Parliament:
www.europarl.europa.eu/portal/en/co...
Small British firms stop selling to EU and Northern Ireland over 'crazy' Brexit rule change.
Some small businesses have been forced to stop trading at the busiest time of year for them.
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
Thanks for following if you don't know me.
I've just passed the 10 year anniversary of when I began running marathons for ME research.
I'm aiming to raise funds for biomedical projects whilst connecting and highlighting the stories of people with ME that I meet
🇨🇿🇫🇮🇮🇪🇬🇷🇱🇺🇸🇪🇵🇱🇧🇪🇫🇷🇪🇸🇱🇹🇲🇹🇪🇪🇸🇰🇳🇱🇸🇮🇨🇾🇱🇻🇭🇺🇷🇴🇵🇹🇩🇪🇭🇷🇮🇹🇦🇹🇬🇷🇧🇬🇳🇴🇱🇮🇨🇭🇷🇸🇲🇪
I don’t think people grasp how much our ‘choice’ and our so called ‘free-will’ is constrained by social & political & cultural factors. The danger is in the culture shift: the easier it becomes to ask a doctor to kill you, the more lives may come to be seen as disposable.
In the runup to Xmas it's worth highlighting our book as a possible present for #physios and other #hcps wanting to learn about #ME. I'm still v proud of what we produced and it is still v relevant. @PhysiosForME
www.awesomebooks.com/book/9781839...
