@bexlogan.bsky.social
Living with Long Covid induced ME since April 2020 | Existing from bed | Advocate | POTS | Former NHS staff nurse & fitness instructor |
Thank you for sharing 🙏🏼
06.02.2026 14:08 — 👍 0 🔁 0 💬 0 📌 0Please complete if you've tried HBOT & have ME or Long Covid. It's a straightforward survey & doesn't take long to complete...max 15 mins.
06.02.2026 14:06 — 👍 0 🔁 0 💬 0 📌 0Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation.
The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?
Thank you for your continued support & voice for ppl with #ME. 🙏🏼
06.02.2026 14:04 — 👍 1 🔁 0 💬 0 📌 0
After decades of medical neglect, poor service provision & appropriate care for #ME sufferers this event run by a NI all pt & volunteer led charity is going to be incredible. Amazing lineup of speakers. Book your space today ⬇️ #LongCovid #advocacy
www.eventbrite.co.uk/e/shaping-th...
Unbelievable that this is still the case 30+ years later!!
#MECFS #LongCovid
1) Peter Novak's dysautonomia clinic in Boston reports that ME/CFS and Long Covid patients have increased rates of:
- reduced cerebral blood flow (ca 90%)
- small fiber neuropathy (ca 50%)
- postural tachycardia (ca 20%) and hypotension (ca 15%)
- preload failure (ca 90%)
“More than 15,000 long COVID patients in the Netherlands declared disabled” nltimes.nl/2026/01/29/150…
30.01.2026 07:35 — 👍 3 🔁 2 💬 0 📌 0
Former Irish League goalkeeper: ‘Mystery illness made me think I was dying… it broke my heart to have to step away from pitch’ Photo of Jethren Barr from back when he was playing football Jethren Barr admits he is coming to terms with his illness Graham Luney Former South Africa and Portadown goalkeeper Jethren Barr says he doesn’t want to live a life full of bitterness and anger after a mystery illness slammed the brakes on his football career. The 30-year-old, who still lives in Portadown, thought he was dying when he was hit by the “terrible illness”. In June 2025, his life took a shocking and traumatic turn when medics informed him he had Myalgic Encephalomyelitis (ME), also called chronic fatigue syndrome.
Thanks very much to Jethren Barr for sharing his story in this in-depth article about how Myalgic Encephalomyelitis forced him to retire from his professional football career 👍
www.belfasttelegraph.co.uk/sport/footba...
Archive:
archive.is/wu7ZP
#MEcfs #MyalgicEncephalomyelitis #CFS #PwME
TW: Medical neglect, severe ME/CFS
An NHS hospital has withdrawn vital medication from a severe ME patient that enables her to tolerate food and fluids. She is now showing signs of dehydration following the removal of her IV fluids.
www.thecanary.co/uk/analysis/...
www.thereforme.uk/p/too-ill-to...
A bit about me & my journey living with Long Covid ME in Northern Ireland. @thereforme.bsky.social
🚨 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!
Our Digivan has started its journey!
First stop Department of Work and Pensions!
It’s carrying 1,000 #LongCovid leaflets on board so please come along and take some! 😃
Full route in photo attached.
We were trending on Twitter/X earlier!
Thanks everyone for supporting the #WhereIsIt campaign! Some pics of the van below! #LongCovid
Please watch & share to raise awareness on the similarities between Long Covid & ME & how history has repeated itself in how we are treated.
youtu.be/A2CEg2PaB6A?...
www.thereforme.uk/p/too-ill-to...
A bit about me & my journey living with Long Covid ME in Northern Ireland. @thereforme.bsky.social
