Why the mask? I have unknowingly been exposed to TB, measles, and SARS-CoV-2, only finding out later from positive test results. I'm not interested in gambling with my health—or yours.

Devastating news for the ME community today. We have lost another incredible human with #verysevereME. My friend and comrade Sammy Lincroft. Aged 25 and with a wealth of knowledge and wisdom around ME, social justice, mutual aid, interconnected struggles and so much more 💔

NEW STORY from me for The Sick Times: A legal and political analysis of mask bans across the country. With a list of bans per state. Politicians tell us mask bans are about crime and antisemitism. What they’re not saying: Mask bans are about Covid. 1/ thesicktimes.org/2024/09/03/per…

Sometimes I feel that if I relax my body fully it would stop functioning. I feel like I'm having to breathe on purpose. It's like I'm trying to hold myself up and alive against the heavy dragging sensation in muscles and head. #pwME #myalgicEncephalomyelitis #disautonomia

What a mindfuck to be a disabled writer/artist -- artist residencies have no concept of accessibility beyond ♿️, and only one (iirc) allows disabled people to bring a caregiver. MacDowell Virginia Center for the Creative Arts Hedgebrook et al, you're excluded disabled people.

Sending all our love to all who are grieving the loss of Sammy, a person with #SevereME. She was a powerful communicator. She was kind & creative. She will be missed more than words can say. Please take care of yourself. Drop in a support group or contact a helpline if needed.

Are you a health researcher? Patients are the experts in patient engagement. Here's an easy opportunity to learn from them (next week!) Check PxP. 3 days with a wide range of time zones. Dr. Dawn Richards, PhD Hetty Mulhall CIHR-IMHA Community Dr. Christine Chambers

Hi, KGW News! 👋🏻 Mid Willamette Valley native and clinician-researcher in infection-associated chronic conditions, checking in. I’m here when you’d like to discuss why somatic re-wiring may harm people with Long Covid. I’ve been working on it for almost 15 years. DMs are open.

This LACK of protocol in our NHMESS hospitals for SEVERE M.E. is a murderous disgrace & I will NOT mince my words. Let’s get ME Foggy Dog letter ✉️ trending #meawarenesshour #MURDERinME SIGN ✍️ 🔻🔻🔻 organise.network/actions/petiti… #pwME

Sometimes I'm thankful for paywalls, which prevent me from reading misinformed rage-bait written by people with no specific demonstrated domain expertise but who have a lot of opinions.

Can the ME Community help ME Foggy Dog get more signatures on this petition and get it trending during ME Awareness hour this evening? ow.ly/3yKp50TfbNS #MyalgicEncephalomyelitis #VerySevereME #SevereME

Dangerous garbage being presented “science writing”. Two *actual* facts surrounding #COVID infection: 1. Your risk of #LongCOVID, a currently incurable chronic illness, after surviving an acute COVID infection currently sits conservatively at ~6-7% 2. Your risk of LC increases 1/

Sometimes just being conscious is too much energy expenditure when #MECFS patients are in a crash and often too much for #SevereMECFS patients period. This is why severe patients sometimes cant get better, because simply being alive uses more energy than they can sustain and

One question during screening for our study is "what precautions should we take before entering your home?" We'll be masking anyway, but some have asked for more robust PPE, or to avoid particular scents etc. Working safely with pwME means adapting and respecting the individual

Same, I was called many unkind things for trying not to get covid when I had mild ME. Now that I’m moderate-to severe, do I get any apologies for that? Any: “wow, I see now that you were wise and educated about your situation.” 🙄

KarenLesliePhysio Wear pattern free dark clothes washed in fragrance free detergent/soap, rubber soled shoes, no perfume and no sparkling jewelry. Paper instead of screens. Do not let them let you overstay. Social interaction the hardest part for both of you. #ME life is so lonely. 💔

And, oh by the way, decreased prevalence estimated based on clinic attendance isn’t measuring a reduction in Long Covid occurrence. It’s measuring the people who’ve given up on the traditional ways to seek and receive care because they aren’t working to their satisfaction. ✨✨✨

An unreplicated finding in a study is not a biomarker, even if it is interesting and statistically significant. #dontmakemetapthesign

1/ Looking for 5 perspectives about the online learning modules developed by IMHA Patient Engagement Research Ambassadors. Can you help? Drop your quote in the comments below, or email us: [email protected]

2/ A selection of quotes will be included in a conference poster presentation by @trudy_flynn and @sabrina_Poirier about patient leadership in health research.