🗞️Decent article on #LongCovid in 🇦🇺 "Among the current generation of kids, many are growing up with their mother or father confined to bed or confined to bed themselves. According to a study by ANU, long COVID is hitting up to an estimated 20% of Australians" www.crikey.com.au/2024/12/02/l...

Hi, I've also made a starter pack for anyone interested in ME CFS or Long Covid. go.bsky.app/FbLo7qc

Ah, this is great. Super-simple to use, works immediately, really clear format. Thank you ‪@davidsainez.com‬ and skywriter.blue. skywriter.blue

Can any Blue Sky LC researchers help me out please? Desperately looking to source pre-pandemic covid naive biobanked blood and plasma samples from healthy children aged 8-18 (but predominantly 11-18) to act as historical control for a study? Turning out to be trickier than expected.UK based.Thx! x

INTRO POST: just got set up here although not migrating from the other place(s). Will be expanding my presence here in due course but interested in connecting with other members of the #ME or #MEcfs (sic) community. Interests include health/science, law, journalism, tech. Blog valerieeliotsmith.com

Mōrena Aotearoa Toitū te Tiriti Toitū te Tiriti All power, strength and love to the marchers today Your cause is just and righteous Many, many others who cannot be there physically are with you in their hearts, minds and guts Ka whawhai tonu mātou - Ake! Ake! Ake! 🖤🤍♥️ #kikorangi

People heroically say, “I’ve never let my illness define me” Of course illness defines me. If I hadn’t spent 32 years in bed without effective medical attention I would be a completely different person. Healthy people, you live in a different world, you don’t know it until you lose it. #ME #LC

Fun fact: If someone quotes a post of yours in a way that is unwelcome (as is commonplace on Twitter/X) there is a tool to combat the unwanted attention. Simply click the three dot menu on the quote post & click "Detach quote". This removes your post from their quote post. Useful to know, do share!

✨This petition will close TOMORROW, Nov 15!✨ We're over 7k-- next stop 10k! In this political climate, it's more important than ever to tell NIH that we need to fund infection-associated chronic illnesses. Sign & share widely! US signers: lnkd.in/e99rsvdT International signers: lnkd.in/e3TpjnTE

Phew! Well, now that I've decided to move here properly from Ex, I guess I'd better introduce myself. I've been an environmental journalist since 1985, and a campaigner for most of that time. Here's some blah about my strange and not-always-happy life: www.monbiot.com/about/%F0%9F...

I feel like I am a character in a dystopian movie. We have a big chance of facing soon a pandemic with a virus that scientists know is highly neuroinvasive. H5Nx viruses like #H5N1 were already found in all the regions in the brain below. Where are the vaccines, bloody hell?!?!

More in the “that’s not good, not good at all” bin for today. Acute respiratory distress, despite no underlying conditions and IV antivirals. AND they still don’t know how the poor kid was exposed. 🧪 #episky

This abstract is too good not to share: “In this article, we analyzed the systematic review by Kuut et al into the efficacy of CBT for #MECFS and the eight trials in it. We found many issues with the studies in the review, but also with the review itself” /1 www.scibasejournals.org/neurology/10...

please consider signing chng.it/HF2JBXQSzs

My mum Although less active now, for years she was very, very active eg lots of media work (over 100 radio interviews); hosted dozens of public meetings; coordinated lots of fundraising eg blue ribbon collections;lots of photocopying & stuff envelopes I’m v grateful #MEcfs #CFS #PwME

New from Latvia: Exploring the Joint Potential of Inflammation, Immunity, and Receptor-Based Biomarkers for Evaluating ME/CFS Progression Only abstract currently available: www.frontiersin.org/articles/10.... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE

Workwell Foundation: Workwell teams up with @statwearable Our new collaboration examining whether cerebral blood flow is reduced during post-exertional malaise & if this metric helps explain the worsened orthostatic symptoms many report while in PEM/PESE workwellfoundation.org/workwell-tea...

Dr Claire Taylor seems to have completely disappeared from X shortly after posting the above thread. Hope she's OK.

“ME/CFS patients had increased temperature in the right insula, putamen, frontal cortex, thalamus, and the cerebellum, which was not attributable to increased body temperature or differences in cerebral perfusion.”  www.ncbi.nlm.nih.gov/pmc/articles...

New: A scoping review of ‘Pacing’ for management of #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (ME/CFS): lessons learned for the #longCOVID pandemic Free full text: translational-medicine.biomedcentral.com/articles/10.... #MEcfs #CFS #PwME #MyalgicE #PwLC #postcovid #postcovid19 #LC

Another ME/LC researcher has joined us here — yay! bsky.app/profile/dran...

Yes! Please do send this form along to anyone in the disability and chronic illness communities who might be interested in trying out Blue Sky.

👩‍💻New Research in! Looks very interesting "Beautiful work," states David Putrino www.statnews.com/2023/10/16/l...

Please sign and share this petition to help Karen a severe ME patient who is not getting the help she so desperately needs from the hospital! It is so close to the 10,000 signatures! www.change.org/p/save-karen...

We've arrived on Bluesky! Please bear with us while we get up and running on here. If you have suggestions on who to follow on here from the Long Covid and wider chronic illness communities please let us know!

Interesting report on Charité Fatigue Center's 2nd International Meeting on ME/CFS & implications of #LongCovid for diagnosis & treatment. Of particular interest: focus on (a) biological underpinnings, including endothelial & immune dysfunction, (b) modern treatments & (c) clinical trials #MECFS

Potentially important #LongCovid study in Cell. 🦠 Serotonin reduction seems to be driven by viral RNA-induced type I IFNs. 🎯 Affects tryptophan uptake and hypercoagulability. 🧠 Peripheral serotonin deficiency impairs cognition via reduced vagal signaling. www.cell.com/cell/fulltex...

Hey I made a quick welcome guide to BlueSky :) There's tons more, but I think these few steps will get you up and enjoying it quickly.

Welcome @drannanz.bsky.social.

Yay! Brian Hughes is here! @bmhughes.bsky.social

Update from today’s webinar: over 20,500 kits requested (not all circulated yet). Over 15,500 returned. They have funding for analysis of 25,000 (including 5000 #PostCovid #Mecfs). So please keep highlighting recruitment & also the need to return kits #PwME #CFS #LongCovid #LC #DecodeME

@abrokenbattery.bsky.social Happy to see you here! Welcome 😊

Sadly there's been no response from the CEO of the NHS Trust. "Karen is continuing to struggle and is still getting thinner and thinner." Her family ask the community to continue signing & sharing the petition. Update 👇. #VerySevereME #EndMalnutritioninME #MECFS www.change.org/p/save-karen...

There is a new update on this petition. Over 40 organisations have signed in suport. Please keep signing and sharing. The petition remains open until Cochrane no longer hosts a review supporting exercise for ME/CFS. #pwme, #ME/CFS, #Long Covid www.change.org/p/cochrane-w...