pennysfromwales.bsky.social
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pennysfromwales.bsky.social
@pennysfromwales.bsky.social
27 followers 46 following 23 posts
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Does anybody know of any homeless charities in the Cardiff area who would welcome some used but good quality clothing. I also have some hats and gloves which I have knitted. Mostly ladies clothes.
December 9, 2025 at 12:17 PM
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swastrosarah.bsky.social
Happy Birthday Maeve, you should have been 31 today.
Please remember her for who she was, not how she died. Feminist, Writer, Linguist. Wannabe diplomat with her Irish passport, a gift for Russian & a balanced interest in Israel/Palestine.
#MEKills #PlanForME #JusticeForME #MaeveInquest
A candle flame at dusk
August 26, 2025 at 7:26 PM
x.com/pennysfromwa...
Sylvia Penny on X: "Is there anybody, landlord, charity, philanthropist, people selling homes etc who can help Kyle and his family find accessible housing in RCT please. Kyle who is 14 and has MND would like to spend what time he has left in his own home with his family. Please repost to help Kyle." / X
Is there anybody, landlord, charity, philanthropist, people selling homes etc who can help Kyle and his family find accessible housing in RCT please. Kyle who is 14 and has MND would like to spend what time he has left in his own home with his family. Please repost to help Kyle.
x.com
August 26, 2025 at 7:39 AM
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bhanlon15.bsky.social
Semafor: 'Study finds genetic clues to a chronically overlooked and debilitating condition'

'A preliminary study of more than 15,500 people has revealed possible genetic clues to a common but overlooked condition called myalgic encephalomyelitis'

www.semafor.com/article/08/1...
Study finds genetic clues to a chronically overlooked and debilitating condition
Myalgic encephalomyelitis/chronic fatigue syndrome is not well understood and has long been dismissed as psychological rather than a physical condition.
www.semafor.com
August 10, 2025 at 9:35 PM
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julierehmeyer.bsky.social
I made an audio recording of my first Substack post (briefly describing what's happened for me since Through the Shadowlands came out, along with my plans for the Substack). I plan on doing this with every post, since I know some ME friends can't read. jrehmeyer.substack.com/p/what-the-w...
What the World Asks, What We Give: Energy, Learning, and Suffering
Or: I Bolted My Head Back On. Now I’m Writing Again.
jrehmeyer.substack.com
August 10, 2025 at 4:39 PM
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swastrosarah.bsky.social
There is never enough time to do more than skate over few surfaces of the #MEScandal but between us we managed a few figures in our freestyle dance (without any time for prep in advance). Thanks @natashadevon.bsky.social & producers for the ice & @lbc.co.uk for the arena.
August 9, 2025 at 8:35 PM
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swastrosarah.bsky.social
Looking at 7pm tonight, Saturday 9 August, LBC radio with Natasha Devon.
August 9, 2025 at 10:41 AM
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solveme.bsky.social
In honor of #SevereMEDay (Aug. 8), we’re launching #UnitedForME, a shared hashtag to amplify stories, art & education from the Severe ME community. Join us in uplifting voices that need to be heard.
#SevereME #LearnFromME @batemanhornecenter.bsky.social @openmedf.bsky.social @meactnet.bsky.social
Simple graphic with logos from Bateman Horne Center, Solve ME/CFS Initiative, Open Medicine Foundation, and MEAction at the top. Text underneath reads: “Together, we’re amplifying Severe ME voices with one united hashtag: #UnitedForME.”
August 7, 2025 at 5:46 PM
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abrokenbattery.bsky.social
Clip: BBC Scotland - Professor Chris Ponting explains why large-scale genetic research into #MECFS didn’t happen sooner — despite its prevalence. He says the field was “hugely stigmatized” and “held back… in part because this disease is very strongly female biased.
August 7, 2025 at 10:05 AM
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naomidharvey.bsky.social
Huge thank you to Chris Ponting and the @decodemestudy.bsky.social team for all their work on this project, and the work still to come.

These results are a great foundation and provide a lot of validation for patients across the world 🩵
abrokenbattery.bsky.social Adam @abrokenbattery.bsky.social · Aug 7
Clip: Professor Chris Ponting tells BBC Scotland the world’s largest genetic study of #MECFS has identified eight genome regions linked to the disease. He says the field is finally being kickstarted after years of stigma and neglect.
August 7, 2025 at 9:31 AM
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abrokenbattery.bsky.social
Channel 4 News – full segment on DecodeME results (9 mins) — the world’s largest genetic study of #MECFS — identifies eight genetic differences. Includes interviews with Prof Chris Ponting, a patient participant, Sonia Chowdhury, and MP Tessa Munt.

youtu.be/c5i_K3QEbCI?...
Channel 4 News DecodeME results
YouTube video by Broken Battery
youtu.be
August 7, 2025 at 3:06 AM
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somethingchronic.bsky.social
Anyone know if a crowdfunding has been started anywhere yet?

Let’s help get the #SequenceME research underway asap!!

#DecodeME #ME/CFS #SevereME #LongCovid
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Aug 6
The #DecodeME study only looked at a subset of the total DNA. The same research team would like to deeper with a study called #SequenceME but unfortunately need significant funds to do this. Fingers crossed it happens. 🤞 #MEcfs #CFS #PwME
tomkindlon.bsky.social Tom Kindlon @tomkindlon.bsky.social · Dec 23
SequenceME: first of a kind genetic study

www.actionforme.org.uk/news/sequenc...

Image is from Science for ME weekly update

#MEcfs #CFS #pwme
August 6, 2025 at 8:07 PM
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bhanlon15.bsky.social
Bateman Horne Center: An AI Map of a Puzzling Illness

To create this map, researchers followed 249 people for up to four years—153 with ME/CFS and 96 healthy controls

Study paints a vivid picture of a body whose internal communication systems have gone awry

batemanhornecenter.org/an-ai-map-of...
An AI Map of a Puzzling Illness
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is notorious for its complexity: a disabling illness marked by crushing fatigue, post‑exertional malaise, pain, cognitive fog…
batemanhornecenter.org
August 3, 2025 at 4:36 PM
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disabilitywales.bsky.social
📢 Last chance to apply!

Are you looking to enter public or political life in Wales? The Equal Power Equal Voice mentoring programme is here to support you on your journey.

Closing date: Midnight on Monday 7th July.

Find out more and apply: epev.cymru
Applications for the 2025-26 Equal Power Equal Voice programme are now open. Whether you want to stand for election, join a public board, or lead change in your community, this free mentoring and training programme will give you the tools, confidence, and connections to make your voice heard.
July 7, 2025 at 10:48 AM
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tomkindlon.bsky.social
Going to the Doctor When You Have a Chronic Illness

#chronicillness #ChronicallyIll #hiddenillness
#invisibleillness
GOING TO THE DOCTOR WHEN YOU HAVE A CHRONIC ILLNESS What people think it's like ---------- pie chart showing: Go to appointment Get diagnosed Receive treatment and support Heal your body and get better What it's actually like --------- pie chart showing: Waiting months for an appointment Multiple/ongoing appointments Being left untreated Treatments being ineffective and/or dealing with side effects Worsening and/or new symptoms Dealing with Medical gaslighting @flexiblegonewrong
June 4, 2025 at 5:23 PM
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tomkindlon.bsky.social
Links to some new BMJ letters replying to an editorial promoting rehabilitation therapies for ME/CFS

www.bmj.com/content/389/...
www.bmj.com/content/389/...
www.bmj.com/content/389/...
www.bmj.com/content/389/...
www.bmj.com/content/389/...

Image from the Science for ME weekly update

#MEcfs #CFS
Several new rapid responses have appeared on the BMJ website, commenting on the article by Miller and colleagues on severe ME/CFS. Tom Parsons, Severe ME/CFS Patient. Disproven treatments for ME/CFS are a source of harm, not hope. Putrino et al., Professor. Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions. Mark Vink, Family and insurance physician. Opinion based medicine supported by anecdotal evidence. Rachel Reaveley, former rehabilitaiton consultant. Hope and rehabilitation perspective from a former rehabilitation consultant with ME/CFS. Joan Crawford, Senior Counselling Psychologist. Lack of definition of cardinal features of ME/CFS, use of subjective outcomes, and bias in opinion piece.
May 25, 2025 at 11:44 PM
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tomkindlon.bsky.social
Science communicator Dianna Cowern/Physics Girl has #MECFS & #LongCovid. She has been completely bedbound, but has now improved a bit. She provides an update, talks on life with the diagnoses & on her close friend Tobias with very severe ME/CFS. 12 minutes

youtu.be/vqeIeIcDHD0

#SevereME #PwME
First Update From Dianna (Physics Girl)
YouTube video by Physics Girl
youtu.be
May 25, 2025 at 2:44 PM
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tomkindlon.bsky.social
On 30th May, the 17th Invest in ME Research International ME Conference will be held.

Related article:
European Research and International ME Conference Week

investinme.org/iimer-newsle...

#PwME #MEcfs #CFS @investinmeresearch.bsky.social
investinme.org
May 25, 2025 at 3:39 PM
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tomkindlon.bsky.social
Winner of Campaign of Year award at UK Press Awards was the Times Newspaper for 'ME Awareness & Reform',incl. its coverage of the inquest into the death of Maeve Boothby O'Neill,daughter of Times journalist Sean O'Neill

Interview with S O'Neill (13 mins)
www.youtube.com/watch?v=lZoP...
#MEcfs #PwME
THE PRESS AWARDS Campaign of the Year WINNER THIS IS MY LAST DUTY TO MY DAUGHTER MAEVE' A devastating illness and a father's fight for the truth When Sean ONe daugher died at 2, he faced years of waiting for an inquest and then the one of wing her dedine with poor team for her severe M. Hese he describes the aging months of dealing with a kpl peces that gives no help to families to find anen for Maeve about why the system failed her and other sufferers THE CLASH M.E. Awareness and Reform The Times The Times had been reporting on ME (or chronic fatigue syndrome) for years, highlighting the stigma faced by people suffering from the misunderstood disease. But the death, in October 2021, of Maeve Boothby O'Neill, daughter of senior Times journalist Sean O'Neill, gave new impetus to the campaign. As the inquest into Maeve's death app... Read More
May 25, 2025 at 1:27 PM
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tomkindlon.bsky.social
(Florida, USA)
This $4 million-study funded by the CDC in 2020 continues to recruit. It would be a terrible pity if not all the funding get used due to the recruitment target not being reached so please share.

redcap.nova.edu/redcap/surve...

#LongCovid #MEcfs
Welcome to the COVID UPP Study/Bienvenido al Estudio COVID-UPP A A A Page 1 of 3 Welcome to the COVID UPP study! Thank you for your interest in COVID UPP also known as COVID-19: Understanding The Post-Viral Phase study. We are conducting this study to understand why many patients, after experiencing an acute COVID-19 infection, continue to experience symptoms that have resulted in a viral-induced fatigue syndrome with similar symptoms to ME/CFS. This condition is disrupting the lives of thousands of people. Your participation would help us understand what is causing it and to come up with potential solutions. For more information on the study, you can find an overview of the study and Frequently Asked Questions here. COVID-19: Understanding The Post-Viral Phase FAQ Bienvenido al Estudio COVID-UPP! Gracias por su interés en COVID UPP, también llamado COVID-19: Understanding The Post Viral Phase study (Estudio para comprender la fase post viral). Estamos haciendo este estudio par comprender porque después de sufrir una infección aguda de COVID-19, muchos pacientes continúan teniendo síntomas y algunos desarrollan un síndrome de fatiga causado por el virus. Este síndrome parece tener síntomas muy similares a los de ME/CFS. (Encefalomielitis mialgica/síndrome de fatiga crónica). Esta condición esta afectando las vidas de miles de personas. Su participación en el estudio nos va a ayudar a comprender que lo causa y darnos ideas para tratarlo. Si desea mas información sobre el estudio, puede encontrar un descripción general del mismo y respuestas a preguntas frecuentes en este enlace: COVID-19: Understanding The Post-Viral Phase FAQ
May 21, 2025 at 9:40 PM
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tomkindlon.bsky.social
Pushback on "Brief Outpatient Rehab" Trial for Long Covid from Norwegian Ideological Brigade by David Tuller @davetuller1.bsky.social

virology.ws/2025/05/15/t...

Image taken from Science for ME weekly update

#LongCovid #PASC
Pushback on "Brief Outpatient Rehab" Trial for Long Covid from Norwegian Ideological Brigades On a recent article by biostatistician Richard Aubrey White and his take-down of an unimpressive Long Covid rehabilitation study by Nerli et al. "It is refreshing when other academics issue their own challenges to the kinds of self-evident methodological lapses that mar this study and so much of this research."
May 22, 2025 at 12:48 AM
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tomkindlon.bsky.social
In an international survey (n=1534) www.mdpi.com/2075-4418/9/..., 67% of those with ME/CFS reported they never recovered from a crash (that caused postexertional malaise).

Patients & professionals should be informed of this risk.

Exertion has ruined some people's health

#MEcfs #CFS
Table 6. Duration of PEM, illness course, and functioning (N = 1534). Items %(n) Length of prolonged, unpredictable recovery period 95.2 (1460) Within 24 h Between 1 and 2 days Between 3 and 6 days Between 1 week and 1 month Between 1 and 6 months Between 6 months and 1 year Between 1 and 2 years Over 2 years Crash that has never resolved 14.1 (216) 38.9 (596) 58.0 (890) 46.7 (717) 30.3 (465) 13.6 (209) 9.8 (151) 12.3 (189) 67.1 (1029)
May 10, 2025 at 1:48 PM
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bookshelfie.bsky.social
#booksky
May 2, 2025 at 9:40 PM
More cuts to the disabled and chronically ill. www.broradio.fm/news/local/p...
'Pounds before people': day centre move opposed
People whose lives have been transformed by a day centre which is the only opportunity for some to get out of the house are fighting plans to move it.
www.broradio.fm
March 26, 2025 at 3:20 PM
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cabruce.bsky.social
This petition calling on the Government NOT to make cruel cuts to #benefits that will force more people into poverty now has almost 65,000 signatures.

Let’s make it 100,000 this weekend. It only takes a moment to sign🙏
NO cruel cuts to benefits
The Government is planning “catastrophic” cuts that experts say will force disabled people into poverty. Don’t think that’s right? Add your name now.
act.38degrees.org.uk
March 22, 2025 at 1:08 PM