🔗 Help directly w/care: 💸PP: PayPal.me/RobynthRedd 💸Vmo: Venmo.com/RobynthRedd (Send as "Friends/Family") Gift an item to help w/care: 👑WL: throne.com/robynthredd 📨DM for other options! TY!💜 /4

gofund.me/9c15313ea Every dollar helps. She is less than a week out and is already trying to go back to work because there's no savings, no family wealth, and she is also a single mother.

More on that Long COVID trial from Western University in London, Ontario, that involves lying to participants receiving an exercise intervention by telling them they're undergoing "standard post-COVID-19 treatment." How did this pass ethical review?? virology.ws/2025/12/16/trial…

I just saw this on Facebook. I'm fucking gutted right now. Gutted Megs please tell me this isn't true

🙏Thank you for listening @visible_health and for prioritising patient safety. 💙 This is ace trauma-aware governance. 💪 When digital health treats UX as curated space and epistemic harm as real, we all move forward - and Visible becomes an even stronger community partner.

physiosforme.com/hcpwithmesu… 150 responses in 2 weeks. Thank you all for completing. Just a reminder that it is open until 31st Dec and it allows for pacing (can save responses and cont at another time). Please share widely. Still some professions not reached @PhysiosForME

Expected more from @visible_health - they’re supporting this Trudie Chalder study: Balance Acceptance and Commitment Therapy for Long COVID “This randomised controlled trial aims to investigate the efficacy of a psychological intervention for long COVID…” #LongCovid #WTF ⬇️

Please donate between the 2nd and the 9th of December and your donation will be doubled!! Give what you can to help people with ME and Long Covid. Thank you ♥️♥️♥️ #BigGive #ChristmasChallenge #MECFS #MyalgicEncephalomyelitis

FOR ALL MILD AND MODERATE #MECFS PATIENTS you guys take up 75% of the patient population. When you talk about what me/cfs is like, for the love of god don’t describe it at your level. Cancer and other illnesses are defined by the WORST of it. It’s not defined by fast diagnosis, fast treatment, no symptoms and easy recovery. HIV is defined by aids. Cancer is defined by death despite MOST people recovering. ALS is defined by a short life span, rapid, scary breakdown of the body followed by death. I don’t want to hear a single mild, moderate or even severe patient describing this condition as chronic fatigue. This condition at its worst, as said by doctors themselves, is like the last few weeks before death in cancer and aids. The worst of it, is fully bedbound in a dark room unable to speak, eat, or sit up where a simple movement can make you sicker. This is like the last moments of death in fatal illnesses. It is extreme, torturous suffering without relief. Being so sick no one can even hold your hand. It is a chronic state of dying without death because some mechanism in our body still keeps us alive. It is the worst nightmare you can ever imagine. Describe it like that. Then you can say you’re ‘fortunate’ to be at severity 1 or 2 and not 3 or 4. None of us in severity level 4 or 3 who are bedbound want to hear other patients say “chronic fatigue with immune issues”. Be bold. Be accurate. Put some respect on this disease by describing it accurately. If people don’t get absolutely horrified by your description you’re not being accurate enough. Let’s change our language and define the disease by the worst of it, like all other illnesses. #mecfs #longcovid

I’ve spent a lot of time and energy trying to make sense of ME/CFS and now Long Covid. While different subtypes of Long Covid can be differentiated based on observed differences in pathophysiology and comorbidities, trying to split them based just on symptoms isn’t going to work.