Ness

Vegetation ecologist. Manager of environmental research labs. On pause; MECFS/LC.

[davidtuller @davidtuller1]

This has been a challenging crowdfunding for Berkeley's Trial by Error project on ME, ME/CFS, Long COVID, etc, but it seems like things are catching up in the final days. Now at 80% of the goal! Thanks to all!!! https://t.co/Ad1zvdxXd4

[davidtuller @davidtuller1]

And if you appreciate my work, consider a donation to UC Berkeley's current crowdfunding campaign for my Trial By Error project: https://t.co/Ad1zvdxXd4

[Oonagh Cousins @oonagh_cousins]

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👇🏻

[Anna (please boost pinned post) @halcionandon]

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.

[Naomi Harvey “PhD Witch” #WearAMask @Naomi_D_Harvey]

This is excellent. Violet Affleck has grasped Severe ME in a way very few people who haven’t experienced it first hand do.

[Rob Wüst @RobWust]

🧵 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.

[Woozle @WiredWoozle]

@halcionandon 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. 🙏 https://t.co/6WYF9h57Zz

[Anna (please boost pinned post) @halcionandon]

@JanetDafoe Dr says will die if stay here with abuse neglect diagnosed narcissistic psychopath father please help 🙏

[Emerge Australia @EmergeAus]

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 - https://t.co/ln7v6IYN0f. Stay tuned for more details!

[NickyProctor @NickyProctor]

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:
https://t.co/4kJ57rHzNH

[NickyProctor @NickyProctor]

@Linusthecat2 @YSHYorkNYorks @YSTeachingNHS 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.

[davidtuller @davidtuller1]

Berkeley's April crowdfunding for Trial By Error launches on April 6 (about 90 minutes from now): https://t.co/A75shgst6P

[Dame Sa 🐝 3.5% @LongCovidHell]

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 https://t.co/CR0Lq9PiVd

[Brian Fog @useless_priest]

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?

[WE&ME Foundation @weandmecfs]

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 Happy New Year from the WE & ME Foundation!🍀

More information: https://t.co/J5eEpb9ZY2

[Brian Fog @useless_priest]

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.

[Ness @nessau0]

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. https://t.co/kBh9ISrHzM

[Dr Melanie @MelanieWeckert]

@karenphysiocouk Perfect

[Senator Jordon Steele-John @SenatorJordon]

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.