cinnamonrollalong.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

@RobWust appreciation post: tldr: post-exertional malaise (PEM) is NOT a choice. In 2024, an amazing paper was published showing us some key features unlocking the physiology PEM in #LongCOVID. Curious minds would read a paper like this and view 1/

submitted 98 days ago • 13 comments

I need something to keep my hands busy & calm my mind but I have NO energy and a melted brain. Embroidery? Too complicated, weak hands. Puzzles? Paint-by-numbers? Can’t do either in bed. Crochet? Can’t count. Knitting? No arm strength. Oh and no fundage $ #myalgicecephalomyelitis

submitted 114 days ago • 4 comments

Vitally important report from @crunchme.bsky.social on Addressing Infection Associated Chronic Conditions "It brings together much of the key information needed to help bring policymakers up to speed on these conditions - including #LongCovid, #ME/CFS, #POTS"

submitted 114 days ago • 2 comments

Still more deadly than flu or RSV jamanetwork.com/journals/jam...

submitted 114 days ago • 21 comments

So this is the new great idea🤔 I’m pretty sure if Sarah had seen a GP she wouldn’t have needed to have a CT scan, no need to speak to the ENT registrar & yes it could be managed in the community Why does NHS England always underestimate the skills of GPs? www.england.nhs.uk/long-read/re...

submitted 134 days ago • 43 comments

We're only now heading into what is normally the worst of Norovirus season here... and our rolling annual total of cases of Noro is already unprecedented. Why? Because...

submitted 132 days ago • 5 comments

Winter crisis - GPs are not to blame By providing 20% more appts with 20% less funding than 2016 1/7 of population waiting for hospital treatments or investigations they are overwhelmed GPs have 2300 patients up 500 Funding not matching demand & some GPs unemployed @rthonwesstreeting.bsky.social

submitted 133 days ago • 1 comment

"New data from researchers in Denmark suggest that children who have a lot of common infections early in life have higher risk of moderate to severe infections and antibiotic use throughout childhood." Study: jamanetwork.com/journals/jam...

submitted 134 days ago • 8 comments

Please keep watching & sharing this 27min important film on "The Greatest Medical Scandal" by @abrokenbattery.bsky.social We need everyone to be watching this #ME #MEcfs #pwME #LongCovid #MedSky youtu.be/RiwX9Y0NbiQ?...

submitted 158 days ago • 0 comments

We’ve got a hard hitting #ThereForME substack out today from Karen Galpin, writing about caring for her daughter Sophia, who has very severe ME. Karen describes their daily reality, responding to narratives that downplay the impact of #ME www.thereforme.uk/p/this-is-no...

submitted 134 days ago • 2 comments

I'm uncomfortable sharing #ME related personal info but the level of disability #pwME experience always needs exposing. Sometimes I type when I can't bring food to my mouth or put on another layer of clothing. Typing uses fingers & eyes, eating & dressing require limbs & more energy. #MEcfs

submitted 134 days ago • 0 comments

"Widespread use of metal caused estimated 2- to 3-point drop in IQ for nearly 180 years of Pax Romana" Meanwhile, #Covid in 5 years: "Participants with persistent symptoms had a 6-point loss in IQ, while those who had been admitted to an ICU experienced a 9-point loss in IQ."

submitted 134 days ago • 4 comments

BREAKING H5N1 UPDATE CDC says… don’t worry… they’re not like you…they were gonna die anyway. #PreeeexistingConditionsssss

submitted 134 days ago • 1 comment

I have just been judged by someone with LC/ME much milder than mine for not ‘seizing the day’ and making the most of opportunities like they do. It was someone who should know better. Gobsmacked. #pwME #pwLC

submitted 135 days ago • 5 comments

Hmmm. There's something more than a little concerning about what's happening with Norovirus here. A quick thread about Norovirus and its place within in the 'quad-demic'. 🧵

submitted 158 days ago • 14 comments

While waiting in a ward to see someone in hospital this week, I carefully watched a doctor who went from patient to patient handling them and handling objects and not washing or sanitising their hands between patients... and coughing Not into their elbow... just into the air.

submitted 157 days ago • 22 comments

You know you've got an energy-limiting illness when you look at the calendar pondering when might be the safest day to attempt a shower before Christmas. #ME #MECFS #pwME #POTS #Disability #NEISvoid

submitted 158 days ago • 3 comments

THIS IS HUGE! Researchers at TAU and the University of Lisbon have developed a groundbreaking nano-vaccine against COVID-19, delivered via nasal spray WITHOUT requiring cold storage. Preclincial studies show the vaccine was effective against ALL major SARS-CoV-2 variants. Let’s talk about that! 🧪🧵⬇️

submitted 163 days ago • 152 comments

✨Please share! COVID, H5N1 & more newsletter. In this issue: 💀Spike protein in skull bone marrow yrs after infection 😴T cells exhausted in MECFS & probably LongCOVID ✨LILRB1 & LILRB2 in PBMCs, LongCOVID biomarker? ⛪Notre Dame Paris reopens & much more! buff.ly/4f2OMnW #medsky #IDsky #Pedsky 🛟😷🧪

submitted 163 days ago • 4 comments

SKY News segment on #MECFS (20 mins), Includes interview with Heather Gordon, whose daughter Karen has effectively been trapped in hospital for a year with severe ME. Also features Chris Ponting and Anna Gregorowski from BACME. youtu.be/FX6Fk9-WSmo?...

submitted 162 days ago • 3 comments

Switzerland: SRF writes about a survey by Long COVID and ME/CFS patient organisations showing rehabilitation leading to deterioration for half of the respondents and improvement only for 17%. Google translation: www-srf-ch.translate.goog/sendungen/ka... #MEcfs #CFS #PwME #LongCovid #PASC #PwLC

submitted 164 days ago • 2 comments

Read the article below. I'm not sure if it's because I've had a rough few weeks but I am reading this cynically with a big dose of scepticism. With the backdrop of the 'unprecedented pause' any edits by NICE will have to be approved by all Royal Colleges. Lots of 🤞 #pwME archive.ph/vq1FX?s=09

submitted 163 days ago • 0 comments

In 2021 in England, public health decided that the way to get well was to get sicker, and that the way to get rid of disease was to catch it. It's official policy. They write it down and everything. Since then...

submitted 169 days ago • 16 comments

This is a big leap from ‘it doesn’t affect kids’. Still under recognised, poorly served and underfunded. This is our future generation - no consideration of repeated infections here. www.independent.co.uk/news/health/...

submitted 167 days ago • 8 comments

"Rehabilitation stays are harmful for many people with severe long Covid and ME/CFS. This is shown by a recent survey." Actually, it's shown by literally every survey. And loads of research. And millions of reports of harm over decades. And zero evidence of efficacy.

submitted 168 days ago • 2 comments

Thought of today… “Long COVID is just like other post viral syndromes. Nothing new.” (Paraphrased from minimisers…) Erm. “Post”-viral illnesses can be severe and disabling. What made you think it was fine to give that outcome to vast swathes of the population?

submitted 168 days ago • 7 comments

Long Covid isn’t FND. Pass it on. www.mdpi.com/2075-4426/14...

submitted 176 days ago • 16 comments

For those who followed LongCovidPharmD on twitter, this looks like the results of the big survey she ran a while back on what meds etc have helped us with #MECFS or #longcovid!

submitted 171 days ago • 2 comments

⬇️Ron Davis & team study of patient-reported treatments for #mecfs & #longCovid. Over 3900 patients participated. "Of all treatments investigated, graded exercise therapy received the lowest ... score, with the vast majority of polled patients reporting harms and almost none reporting benefit."⬇️

submitted 171 days ago • 1 comment

Dec 1: It's Dr William Weir, who has worked with and supported patients with ME for decades. His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”

submitted 171 days ago • 8 comments

I woke up today in a country where I work through pain and exhaustion, where people can be stigmatised and sanctioned into work when too ill, just so we can pay taxes to fund the NHS to offer assisted dying instead of disease prevention, the treatment we need or end-of-life care when it's too late.

submitted 171 days ago • 1 comment

Just spotted this Q from Green co-leader Adrian Ramsay about Long Covid research 👏👏👏 🧐 Response mentions the recent research roundtable - more details than I remember seeing before, including links to other post-viral conditions and intervention studies for new/repurposed treatments.

submitted 173 days ago • 0 comments