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Posts by Clare

Video

The warbler season is well underway at the #weedypond
Many birds are dropping in to wash & refuel after their long migration journeys.
Can't wait to see the first Blackcap on camera.
Old favourites are still present of course.
#Chiffchaffs #Wrens #DailyNature ๐Ÿฆ‰

2 weeks ago 51 3 0 0

Bash Back are a violent men's rights group.

2 weeks ago 12 0 1 0

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 Savannahโ€™s MP. Iโ€™ve donated again.

Also includes a diary style update of her experience in hospital.

www.gofundme.com/f/severemerg...

2 months ago 24 16 0 3

@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.

2 months ago 3 2 0 0
Video

๐Ÿšจ 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 ๐Ÿ™

๐Ÿ”— Take part, and find out more: www.actionforme.org.uk/research-cam...

Thank you!

3 months ago 8 7 3 4
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An NHS hospital is starving a severe ME patient and 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

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/...

2 months ago 50 35 9 18

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;

3 months ago 42 1 1 1
hcps with ME survey | Physiosforme

๐ŸšจNew survey alert ๐Ÿšจ

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...

5 months ago 25 19 0 2
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Video

Lord Falconer mentions Oregonโ€™s annual reports on assisted suicide.

He doesnโ€™t tell Peers that those same reports reveal:
โ€ข deaths approved for anorexia, arthritis and diabetes
โ€ข one person took over 5 days to die
โ€ข nearly half say they feel like a burden as a motivation

5 months ago 1 1 0 0

@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

5 months ago 1 1 1 0
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Domestic wood burners kill thousands and cost NHS millions a year, report suggests Burning of wood and coal in homes contributes to almost 2500 deaths a year, and stopping unnecessary burning would save the NHS millions of pounds, a report suggests. An analysis by the charity Globa...

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/...

5 months ago 20 9 1 1
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Scientists develop first โ€˜accurate blood testโ€™ to detect chronic fatigue syndrome Research could offer hope for ME patients โ€“ but some experts urge caution and say more studies needed

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 ...๐Ÿงต
www.theguardian.com/society/2025...

6 months ago 1516 637 58 60
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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...?

9 months ago 181 102 13 11
Motability schemeโ€‹

As someone who has suffered from severe ME/CFS for more than 30 years, I can relate to Sir Ed Daveyโ€™s feelings of betrayal in having to list all the things his son canโ€™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 Sussexโ€‹

Motability schemeโ€‹ As someone who has suffered from severe ME/CFS for more than 30 years, I can relate to Sir Ed Daveyโ€™s feelings of betrayal in having to list all the things his son canโ€™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 Sussexโ€‹

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

11 months ago 45 18 2 0
Video

We are outside Parliament today protesting the bill and the devastating impacts it could have on Disabled people.

Weโ€™re here with Liz Carr, actor and activist with Not Dead Yet UK, speaking about why sheโ€™s opposed to the Assisted Dying Bill.

11 months ago 37 17 0 0

Naive. Please listen to disabled peoples organisations.

11 months ago 0 0 1 0
Image of young scientist with a background ofbiomedical research imagery in a research laboratory

Image of young scientist with a background ofbiomedical research imagery in a research laboratory

Apply by 31 March
๐™„๐™ฃ๐™ซ๐™š๐™จ๐™ฉ ๐™ž๐™ฃ ๐™ˆ๐™€ ๐™๐™š๐™จ๐™š๐™–๐™ง๐™˜๐™ ๐™Ž๐™ช๐™ข๐™ข๐™š๐™ง ๐™Ž๐™ฉ๐™ช๐™™๐™š๐™ฃ๐™ฉ ๐˜ฝ๐™ช๐™ง๐™จ๐™–๐™ง๐™ž๐™š๐™จ
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

1 year ago 2 2 0 0
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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.

1 year ago 472 188 23 10

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 peopleโ€™s dignity.

These cuts are disgraceful - and they will cost lives.

1 year ago 2709 938 75 30
Model of a human brain on a blue plate.

Model of a human brain on a blue plate.

How are vitamin B12 and brain ageing connected? ๐Ÿง ๐Ÿ’Š ๐Ÿง ๐Ÿ’Š

This #BrainAwarenessWeek, weโ€™re sharing new evidence suggesting current recommended vitamin B12 levels may not be high enough to counter cognitive decline with age ๐Ÿ“‰

Read more โคต๏ธ
buff.ly/Cg8r5av

1 year ago 5 3 0 0
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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...

1 year ago 245 69 26 13
Area chart showing ME funding (ยฃ6m) vs. MS, IBD and Parkinson's by the UK Government, 2015-20

Area chart showing ME funding (ยฃ6m) 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 ๐Ÿง

@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

1 year ago 37 25 7 0
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BuDS Response to Tom Shakespeareโ€™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...

1 year ago 3 1 0 0
Charlotte and Olly standing by table with a tagine.

Charlotte and Olly standing by table with a tagine.

Charlotte and Olly leaning on sides of a circular kiln in Charlotte's studio.

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 โ€œresponsible personโ€ & more, or face bans & fines

1 year ago 1 1 0 0
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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...

1 year ago 13 4 0 0
The acknowledgement of an email received at the Citizenโ€™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.

The acknowledgement of an email received at the Citizenโ€™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...

1 year ago 3 2 0 0
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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.

1 year ago 463 124 37 13
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ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) YouTube video by Broken Battery

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?...

1 year ago 473 219 47 51
Post image

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

๐Ÿ‡จ๐Ÿ‡ฟ๐Ÿ‡ซ๐Ÿ‡ฎ๐Ÿ‡ฎ๐Ÿ‡ช๐Ÿ‡ฌ๐Ÿ‡ท๐Ÿ‡ฑ๐Ÿ‡บ๐Ÿ‡ธ๐Ÿ‡ช๐Ÿ‡ต๐Ÿ‡ฑ๐Ÿ‡ง๐Ÿ‡ช๐Ÿ‡ซ๐Ÿ‡ท๐Ÿ‡ช๐Ÿ‡ธ๐Ÿ‡ฑ๐Ÿ‡น๐Ÿ‡ฒ๐Ÿ‡น๐Ÿ‡ช๐Ÿ‡ช๐Ÿ‡ธ๐Ÿ‡ฐ๐Ÿ‡ณ๐Ÿ‡ฑ๐Ÿ‡ธ๐Ÿ‡ฎ๐Ÿ‡จ๐Ÿ‡พ๐Ÿ‡ฑ๐Ÿ‡ป๐Ÿ‡ญ๐Ÿ‡บ๐Ÿ‡ท๐Ÿ‡ด๐Ÿ‡ต๐Ÿ‡น๐Ÿ‡ฉ๐Ÿ‡ช๐Ÿ‡ญ๐Ÿ‡ท๐Ÿ‡ฎ๐Ÿ‡น๐Ÿ‡ฆ๐Ÿ‡น๐Ÿ‡ฌ๐Ÿ‡ท๐Ÿ‡ง๐Ÿ‡ฌ๐Ÿ‡ณ๐Ÿ‡ด๐Ÿ‡ฑ๐Ÿ‡ฎ๐Ÿ‡จ๐Ÿ‡ญ๐Ÿ‡ท๐Ÿ‡ธ๐Ÿ‡ฒ๐Ÿ‡ช

1 year ago 71 17 3 2