@wamesmecfs.bsky.social
Disabled campaigners have welcomed the government’s announcement that it will review the laws around powered wheelchairs and mobility scooters, and examine how new mobility technology could be “safely implemented” for disabled people to use.
tinyurl.com/yzrsdnh9
Cort explores the context and significance of Dr Jarred Younger's team's recent findings of brain inflammation in ME/CFS, and discusses possible treatments for further study.
tinyurl.com/7ya8tkbw
HM Courts & Tribunals Service (HMCTS) have covered up the existence a bug that has been known for 5+ years to lose and destroy social security appeal evidence for years, the BBC has revealed. Judges and representatives were never informed of the issue.
tinyurl.com/5uv6jnav
MERUK explores the conflicting findings for mitochondrial abnormalities in ME/CFS. These structures, found in every cell in the body, convert energy from our food into a form our cells can use.
tinyurl.com/yzyhzb8u
Dr Jarred Younger discusses the significance of the DecodeME results [15 mins] +Transcript
tinyurl.com/4v3ujd9p
David Tuller speaks to Oonagh Cousins, a former world-class rower & rep for the #ThereForME campaign, about her disappointment over the English Delivery Plan. [15 mins] +Transcript
tinyurl.com/mpksb6br
Sarah Boothby had no idea that while she begged for help for her daughter Maeve, the people she was turning to were holding secret safeguarding meetings & proposing Maeve’s forcible removal from her care." A social worker herself, she was excluded from 7 such meetings.
tinyurl.com/p6uyxbzb
Buy Kara Jane’s posthumous second album, In Limbo, released on Severe ME Day 8th August 2025, along with her previous album It’s Still M.E. Kara’s dream was to raise £100,000 for ME research. Her family are continuing her fundraising efforts. karajanesings.com
11.08.2025 11:35 — 👍 1 🔁 1 💬 0 📌 0You have the opportunity to donate to ME/CFS research at the Edinburgh Uni, the home of the #DecodeME study. "The ME/CFS research team is investigating the genetic causes and possible biomarkers of myalgic encephalomyelitis (ME)."
tinyurl.com/5327mzfb
Experts challenge the view that COVID-19 has become a seasonal "winter sniffle". Their concerns: low vaccine take up, unvaccinated children & evidence that COVID infections make people become more vulnerable to other infections and & illnesses.
tinyurl.com/3bsus3tn
GP surgeries managed by eHarley Street in Wales have been handed back to Aneurin Bevan HB. With concerns about safety, staffing & supply. Politicians are demanding an investigation into the health board & its relationship with the firm.
tinyurl.com/ysp7rpn5
The 2025 Severe ME Artists Project displays work from 100+ people via a video compilation, writers gallery, and individual images, and acknowledges the grief for those unable to practice their art due to illness and those who have had to change the way they continue their craft
tinyurl.com/y39evjff
#DecodeME explains why they chose to do a genome-wide association study (GWAS) and explains what they found as 8 genetic signals (‘skyscrapers’) that stick up and are significantly different in people with ME/CFS.
tinyurl.com/4eahjhzy
Dayna was continually told her ME was 'likely just my brain playing tricks on my body" but she knew it wasn't so she took part in the #DecodeME study and is thrilled with the discovery that gene variants made her vulnerable to the disease.
tinyurl.com/33xjmyzb
Disability Minister Timms has responded to Campaign for Disability Justice's open letter opposing #Disability benefit cuts. He has not addressed anything of note! Read the full letter here: buff.ly/GrDdtt4
#OpportunitySecurityRespect
Prof Ponting's recent study showed that ME was in patients’ bodies. However, the biophysicist argued that clinicians & scientists should be asking why his work was not done 15 years ago, and suggested that the answer lay in what he called “medical misogyny”.
tinyurl.com/y6y45fhr
Whitney has lived with severe ME for 2 decades. He describes a limbo land "when your mind can conjure ideas and see them clearly but is unable to act on any of them."
tinyurl.com/3f5jspkr
“It is usual for people with severe M.E. to have between 50 and 100 separate symptoms. The impact of these combined is overwhelming and hard to communicate.”
MERUK describes some of the symptoms and challenges on #SevereMEDay
tinyurl.com/2jkfh6fy
Heddiw yw Diwrnod ME Difrifol
Mae 25% yn gaeth i'r ty neu'n gaeth i'r gwely.
Mae ganddynt ME Difrifol.
#SevereMEDay
Today is #SevereMEDay
25% of people with ME are housebound or bedbound.
They have severe ME.
On Severe ME Day, we remember the millions of people living in darkness. To help shed light on their struggle please share the new publication 'Supporting people with severe & very severe ME: a resource guide for clinicians'
tinyurl.com/y6mc9m7u
On July 14, Bridget O'Shea, age 47, died of cardiac arrest after a long battle with ME. ME Centraal honour her life & advocacy by highlighting her blog (in English). Even in her last days, Bridget spoke passionately about the lack of attention & care for the victims of ME.
tinyurl.com/f9hmwp3s
Today is #SevereMEDay
Severe ME takes lives.
Today we remember those we have lost.
Find out more about ME on our website, where you’ll also find a downloadable bilingual information leaflet, and signposts to support available. A QR code has been added to the page, linking to the website.
We hope that the days of dismissing this cruel illness will be confined to the past, and that further research, treatment options and cures will be developed in the future.
Visit ftww.org.uk/health-issue... for more info about ME, and be sure to follow our friends at @wamesmecfs.bsky.social too.
On BBC Radio 5 Nicky Campbell talked to Prof Ponting and patients about the significance of the #DecodeME study. From 1h 4mins
tinyurl.com/5ccfd9jr
BBC Radio Wales discusses ME and the @decodemestudy.bsky.social research. From 36mins 15 on.
tinyurl.com/3h5vxjbh
Dr Guido Cammà provided a poster presentation summarising findings from a study which aimed to investigate structural and functional brain alterations using MRI in ME/CFS patients before and after receiving hyperbaric oxygen therapy (HBOT) [5 mins] +Transcript
tinyurl.com/24k4uy6u
Ahead of Severe ME Day tomorrow the World ME Alliance has published: Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians. It is intended for use in crisis situations, particularly when hospitalisation is being considered by clinicians.
tinyurl.com/yc57rc77
DecodeME media roundup:
Guardian: tinyurl.com/247362ju
New Scientist: tinyurl.com/5n6fsspw
Independent: tinyurl.com/mr3ndtnd
Times: tinyurl.com/mudt6bym
Telegraph: tinyurl.com/bdd8hej8
Channel 4: tinyurl.com/368kk3h7
The Decode ME study announces there are 8 genetic signals discovered in people with ME/CFS. None are related to depression or anxiety. Overall, DecodeME shows that ME/CFS is partly caused by genes related to the immune and nervous systems.
tinyurl.com/ywyjaprn
