Oxfordshire ME Group for Action
@OmegaOxon
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Self-help group for people with ME/CFS based in Oxfordshire
Joined July 2021
Full programme now out! Join us on 13th November at 5pm for an OMEGA hosted mini conference featuring talks from Prof Karl Morten and colleagues. https://t.co/JoHdinoyl8
#ME #CFS #Lyme
eventbrite.co.uk
Join OMEGA online or in person for our annual AGM as we hear from the researchers trying to make our lives better
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Lots of excellent replies to this question on sensory overload
Sensory overload is still one of those symptoms I haven’t figured out how to describe well. If you experience this, how would you go about describing it to others?
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34 years ago we all knew this was rubbish, but we were powerless to stop the effects from snowballing. The misattributions should be taught in medical school and learned from, to encourage curiosity. That it still isn't makes me furious and heartbroken in equal measures
#MECFSAwarenessMonth – Day 5 1991, the Oxford criteria for CFS were published. Vague and overly broad, they effectively identified people with unexplained fatigue. Despite being seriously flawed, they became popular in UK research and distorted understanding of ME for decades.
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Many thanks to all who supported (financially and/or morally) Berkeley's recent crowdfunding campaign for my project. It ended yesterday at 101% of the goal!!
crowdfund.berkeley.edu
Help UC Berkeley raise $68,000 for the project: David Tuller's Trial by Error Spring 2025. Your gift will make a difference!
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Looking forward to getting together this Sunday
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As we approach #MEAwarenessWeek, a piece recognising the courage that exists in our community. It acknowledges those who have lost their lives, those who have not improved, and those who’ve experienced progress. https://t.co/Dppqw71YJV (1/7)
alifehidden.com
Today I updated my In Memoriam page, commemorating two friends who have died in the past nine months. It’s a page I always update with reluctance: my heart is heavy and I struggle to find words. …
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15/ We could put clean air in every classroom of every school. We could encourage ill children and staff to stay off school until they recover. We could be much more understanding of mental illness. We could put health above presenteeism.
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10/ It's illness which is disrupting children's ability to attend school and educators' ability to attend work. It's illness which, above all else, is causing turmoil. It's illness which is stopping people from thriving in and out of school.
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Letter from one neurologist to another, My dear colleague Suzanne O'Sullivan, I wish I’ve never felt the urge writing this open letter to you. I’ve been in your shoes for decades as a practitioner in the same field, but you’ve never been in mine as a mom whose child has been
📚Suzanne O'Sullivan in her new book 'The Age of Diagnosis' has claimed that Long Covid is psychosomatic There has been ALOT of media attention on this 👉Our contribution on the tropes, techniques & tricks used... https://t.co/qtQ6kWLvAJ
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Life shrinks with ME/CFS. Found on the CFS community on Reddit #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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It’s @JoPlattLeigh, MP for Leigh & Atherton! Jo is a @UKLabour champion in parliament for #pwME & #pwLC + new chair of the APPG on ME. Her message: “My Christmas wish is for people with ME and Long COVID to be recognised and supported through healthcare and the workplace.”
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Post Covid Garbage Heap The virus seems to have moved through me but I’m sinking like a heap of garbage in the middle of the ocean. Lots of neurological symptoms. And I’m either sleeping all the time or wired with my heart racing, air hunger and unable to think at all. Laying
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Great stand up clip. From the husband of someone with ME/CFS https://t.co/K0qZQI79zq
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Very sad to hear about the passing of Byron Hyde. There are few who genuinely did so much for #myalgicencephalomyelitis RIP and thank you for everything 💙
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@Daltmann10 "Analysis of the findings revealed a bias towards the views of one school of thought and a lack of papers on the immunological or virological aspects of CFS." This isn't a new thing at the BMJ.
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@pjfred60 @AlfredHealth I’m sorry that you too have had the same experience, the futility in trying to keep the people you love safe is demoralising. The really sad part is Peter is that there are exceptional nurses on Ward 5 West @AlfredHealth, we have a list of them who we will be rewarding for their
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Ooh! Do read this, please! It gives a better account of @OmegaOxon than our Xitter account currently does. We have been around for 35 years, very much a team effort.
We’ve got a great post out today from @OmegaOxon - reflecting on decades of mutual support in Oxfordshire. I learned a lot working on this one with David & Patricia! What they’ve achieved over the years is incredible. https://t.co/k1XPhJgbe0
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There are still no treatments. He still had nothing useful to say about managing the condition or reducing the chance of it developing into a chronic condition. And, shockingly, he still claimed he wasn't aware of the risks associated with exercise. 2/2
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