It's really okay to watch a stupid movie, read a book, or shut down whatever social media app and do work that means something to you.

Science Alert: 'Chronic Fatigue Syndrome Has Surged Since The Pandemic, Study Reveals' 'Scientists are growing concerned that infections of the SARS-CoV-2 virus may be triggering more cases of chronic fatigue syndrome or myalgic encephalomyelitis (ME/CFS)' www.sciencealert.com/chronic-fati...

Discriminating ME/CFS and other medical problems using data from the UK Biobank Short summary from ME Research UK: www.meresearch.org.uk/discriminati... #MEcfs #CFS @meresearchuk.bsky.social

The Coventry Evening Telegraph, England. 20th January 1989. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

1/2/25, Johns Hopkins: 'Taking a Shot at POTS' 'In the U.S., there are few physicians and clinicians who treat POTS..' 'Madeline Brown..I’m a doctor..there was something wrong with me. I went from being completely healthy to basically being bedridden..' www.hopkinsmedicine.org/news/article...

I was nominated for the former Chronic Fatigue Syndrome Advisory Committee but Trump let it sunset before I could serve. Advising an administration that will be hostile to science and denies Covid will be a challenge. Sending wishes for strength to those working in advisory roles with HHS and NIH.

67 Million people have #MECFS worldwide #MECFS has double the disease burden of HIV with no treatments. A diagnostic blood test would transform medicine for #MECFS patients. Please #Donate to the largest #MECFS biomarker study #SocialGood #Change www.omf.ngo/me-cfs-new-b...

Welcome to OMF Science Wednesdays! 🧬 Every Wednesday (based on United States time zones), tune in here to read a little bit about pieces of science, research, and technology that connect to #MECFS and #OMF research projects. To kick things off, let’s talk about #mitochondria.

Cochrane tells ME/CFS patients that they can go fuck themselves: virology.ws/2024/12/17/t...

'The Power of Championing For Your Own Health' Klimas: "For the longest time we've been saying to the NIH you know if you put set aside money - they will come & they said no - there's money there, just apply you'll get it - and it's just not been true.." www.youtube.com/watch?v=pjGW...

So cool! #crochet 🧶 for the win here 🤩

Sadly, it’s a good time to once again share this amazing infographic that we ran at @science.org more than 7 years ago 🧪 #IDsky www.science.org/content/arti...

What’s up? Puff stitches. Rows and rows of puff stitches again and again. #Mezzo_Cardigan by Make & Do Crew

Health Rising: 'An ME/CFS Sleep Study Goes Where No Sleep Study Has Gone Before' 'This is the first study to assess orexin-A – a wide-ranging neuropeptide that affects nighttime and daytime sleepiness – in the cerebral spinal fluid' www.healthrising.org/blog/2024/12...

This doctor’s letter to United Heathcare for denying nausea medication to a child on chemotherapy.

Apart from reducing Neuroinflammation, there are a number of other ways in which Minocycline might be acting to reduce the symptoms of M.E and Long-Covid in Dr. Miwa's pilot study. I'm particularly interested in its protective effects on Mitochondria & inhibition of MMPs. chatgpt.com/share/6751ec...

Today @thesicktimes.bsky.social: I spoke with long-time disability lawyer Barbara Comerford, who specializes in disability benefits cases for people with ME and now Long COVID. She offered advice for readers who may be applying. thesicktimes.org/2024/12/03/w...

Have you seen HowToGetOn? It’s a tremendous resource created by a pwME

My daughter’s tree! I crocheted the Buffalo plaid Xmas tree skirt with free pattern from Whistle and Ivy Super easy. www.whistleandivy.com/crochet-plai...

Friends don't let friends do graded exercise therapy 💁

New pre-print: Patient-Reported Treatment Outcomes in ME/CFS and Long COVID www.medrxiv.org/content/10.1... #LongCovid #PASC #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS 1/

I spoke earlier today with @karenlhargrave.bsky.social about the #ThereForME campaign to bring awareness to lack of care and treatment for patients with ME and Long Covid. virology.ws/2024/11/21/t...

Living w/ ME: Sadly, the longer it takes to get a diagnosis, the worse the condition can get, and before you know it, you’ve lost your job and your quality of life has taken a nosedive. The stigma surrounding ME is a massive barrier to getting the help we need. wellcomecollection.org/stories/livi...

The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample: link.springer.com/article/10.1... L. Jason et al. (2020) #MECFS #YPwME

Thanks to @drreznicek.bsky.social for posting the challenge! 😊 Choose 20 books that have stayed with you or influenced you. One book per day for 20 days, in no particular order. No explanations, no reviews, just covers. #Books #BookSky 💙📚 #BookChallenge

Finished toddler sweater with hand spun and dyed alpaca yarn from Peru. Never worked with alpaca yarn before and found it worked up nicely, though a bit differently than wool.

I’m in love with amigurumi. Anyone hungry for a pretzel?

Deconstructed Lion’s Brand Mandala into granny squares. Remembering that it was easy, but also remembering that I cursed a lot.

#ME is a violent, turbulent condition. Words like brain fog, tiredness, aching, mood disturbance, interrupted sleep patterns, do not begin to describe the turmoil of #MECFS bodies. It’s like being attacked by a malevolent being, often for decades and without help or understanding.

Please share widely. The 'M.E-Friendly Hospital Charter' and all associated content can now be found in one place on our website! Check it out and get involved! www.stripylightbulb.com/me-friendly-... #NhS #Healthcare #pwME #SevereME