Ness
@nessau0
Vegetation ecologist. Manager of environmental research labs. On pause; MECFS/LC.
I've written a new blog for @thereforme.uk about rest - something I feel deeply about. I talk about how, as an athlete, rest was respected - a sign of discipline and strength. But living with ME/Long Covid, rest became something judged and misunderstood. Link in next tweet👇🏻
Thinking of where I could live or what sort of set up would be best atm. Right now the best arrangement would be a small, quiet accessible place with a carer. Access to good healthcare. Basic goods & services. Doesn’t sound hard, right? Easier said than done. Trying for years.
This is excellent. Violet Affleck has grasped Severe ME in a way very few people who haven’t experienced it first hand do.
🧵 THREAD: Skeletal Muscle Alterations in Long COVID and ME/CFS 1/ 💡 Study Overview We studied whether skeletal muscle changes in Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients are due to inactivity or distinct pathological processes.
A level of terror few can understand. 💔🫂 Folks reading this: The Canary succinctly lists Anna's urgent needs - screenshots below. 👇 Please share. 🔁 Among your followers is a caring person with the resources to help #SaveAnna. 🙏 x.com/WiredWoozle/st…
We need more eyes on Anna’s dire situation—particularly abled & resourced eyes. Thanks to the Canary for the assist. 🙏 Action items in screenshots. 👇 C’mon, global village! #SaveAnna 💪💙 #DV #LongCovid #CovidIsNotOver
Anna (@halcionandon) has severe #MECFS, #LongCovid, and more, and is trapped in a #domesticabuse situation in #Melbourne, #Australia. She needs a safe place to live. She can pay rent & carer’s allowance: thecanary.co/global/world-a… - @TheCanaryUK #Auspol #MutualAid #SaveAnna
@JanetDafoe Dr says will die if stay here with abuse neglect diagnosed narcissistic psychopath father please help 🙏
I have no hope for the future. Even in my dreams I am trapped. Please get me out of here so I have a chance. 😭😭😭 Please help I am losing ability to read. I don’t know how long until I can’t communicate. thecanary.co/global/world-a… #PWME #LongCovid #EhlersDanlos #SaveAnna
ME/CFS Awareness Week 2025: May 6-12. Exciting events including a new podcast season, Journalism Awards, and an online Symposium on May 7 at 2pm AEST. Register today - vist.ly/3mzt9fm. Stay tuned for more details!
Here are slides from the talk I gave to 30+ nurses & doctors of @YSTeachingNHS. None of this lovely group had received any training about #ME - this is not unusual. Feel free to use & share: docs.google.com/presentation/d…
Today I gave a talk to the nurses and doctors of @YSHYorkNYorks @YSTeachingNHS About Myalgic Encephalomyelitis. I’d like to thank Tanya, Lauren & Alison for the opportunity & all who attended & engaged with the topic. I will happily share the slides - DM me if you’d like.
I totally agree. We need funded NHS specialist ME nurses They exist for cancer @macmillancancer Dementia (Admiral nurses) and Parkinson’s. 2x more ppl have ME than Parkinson’s Disease.
Berkeley's April crowdfunding for Trial By Error launches on April 6 (about 90 minutes from now): crowdfund.berkeley.edu/project/46120
When people say Covid is just a cold… Just like: 🚨Polio 🚨HIV 🚨Hepatitis 🚨EBV 🚨TB 🚨Glandular Fever Mild acute symptoms don’t automatically mean mild disease. Even mild Covid infections cause serious long-term issues. #LongCovid #LongCovidKids johnsnowproject.org/fact/all-infec…
johnsnowproject.org
Fact: All infections can cause serious problems
From breathing difficulties, fatigue, and headaches to cardiac damage, immune dysfunction and neurological difficulties, all infections can leave complications in their wake.
URGENT 🇳🇱 1) Does anyone in NL know of a facility that could provide tube feeding for severe ME? 2) Can anyone advise on how to alleviate the severe food intolerance and nausea in the case below? 3) Is there a way to get IV saline at home in NL?
Qs- is there anyone in the Netherlands aware of a hospital/facility that could provide a feeding tube and meet requirements for severe ME? Does anyone have any other advice related to meds/interventions for the nausea and inability to keep food down that doesn’t need hospital?/6
Thank you to the Vienna Philharmonic for donating 25,000€ to advance #MECFS research at the occasion of their iconic New Year’s Concert. This generous support brings hope and makes a lasting impact in the fight against this disabling and terrifying disease.💙 Wishing everyone a…
Everything is on the patient. Everything. Finding out how the illness works. Finding out you need to pace (despite what you're told). Deciding how to much risk to take with infection. Finding out how to mitigate infection. Deciding how much risk to take with treatment.
This time of year can be challenging for some - expectations of family gatherings etc. If you're bedbound, here are 22 ideas for distraction: The Bedbound Activity Masterlist: Part 1 (2019, written/ compiled by Sky Stanton). Parts 2 & 3 linked within. theduckopera.medium.com/the-severe-me-…
ME/CFS affects thousands in Australia, yet our healthcare system has largely ignored it for decades. A lack of research, understanding, and funding has left this community without the care and support they deserve.
Folks may not realise: Anna can pay rent. If you know a Covid-aware person in the Melbourne area with a quiet spare room, please reach out to them directly. Share Anna’s story. 🙏 It’s not hopeless! She even has a doctor on her side, now. 🌥️ #SaveAnna #DV
Anna (@halcionandon) has severe #MECFS, #LongCovid, and more, and is trapped in a #domesticabuse situation in #Melbourne, #Australia. She needs a safe place to live: thecanary.co/global/world-a… - @TheCanaryUK #Auspol #Auspol2024 #KeepFolksAlive #MutualAid #OngoingNeeds
‼️Please can you share‼️ 🇦🇺Based in Melbourne 🇦🇺 Anna’s advised her situation is urgent. Needs housing. Disabled. Needs someone to help with Admin to apply for housing.
Can someone help me find accommodation on FB groups or other places? I don’t know where to advertise I can’t do so much admin. Am barely surviving here. Need help. #pwME #pwlc #LongCovid #MECFS #SevereMe #DontLetMEDie #ChronicIllness #DisabilityTwitter #Melboune #Australia
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