Clare

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear.
#MEKills #HumanRights

Nature Beyond Cure: Disabled Perspectives Books that explore nature and living with disability and illness from disability perspectives. No magical cures here!

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

No woman should be forced to change her clothes in front of a male colleague | Sonia Sodha A case brought by an NHS nurse over a shared changing room could be the tip of the iceberg

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

BuDS Response to Tom Shakespeare’s Letter Supporting Assisted Suicide Dispute among disabled people highlights need for Royal Commission on Assisted Suicide

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

News in Brief - January 2025 This thread has a Science for ME 'News in Brief' post for each week in January 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman....

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 firms stop selling to EU and Northern Ireland over 'crazy' Brexit rule change A change to safety laws means firms face paying out thousands more a year to send products to the EU

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.

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

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.

A Physiotherapist's Guide to Understanding and Managing ME/CFS | Karen Leslie,Nicola Clague-Baker,Natalie Hilliard,Michelle Bull | 9781839971433 A Physiotherapist's Guide to Understanding and Managing ME/CFS by Karen Leslie,Nicola Clague-Baker,Natalie Hilliard,Michelle Bull | 9781839971433, Buy new & second-hand (used) books online with Free U...

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...

The Chester Chronicle, England. 10th November 1995.

"Misdiagnosis can lead to setbacks if sufferers are encouraged to exercise to 'shake off' their illness".

#mecfs #myalgice #myalgicencephalomyelitis #cfsme