Jo
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jopriestley.bsky.social
Jo
@jopriestley.bsky.social
26 followers 76 following 7 posts
Married to jupi 🩷
ME for five years (maj sev & v sev, mod/mild for a year or two)
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jopriestley.bsky.social
RE: PEM alternative names- I had a thought yesterday that Delayed Onset Neuroimmune Exhaustion/ DONE could be quite tidy. Maybe DOSE?

I struggle with current options not being easy to say aloud, and none of them convey the delayed start

#mecfs #MyalgicEncephalomyelitis #pwme
February 8, 2026 at 5:43 PM
Reposted by Jo
diatoma.bsky.social
Friends, please follow @meactnet.bsky.social and other #MyalgicEncephalomyelitis #MECFS #LongCovid #IACC orgs and join in #WorldMEDay #MillionsMissing actions in May and beyond ❤️.

#GreatestMEdicalScandal #TeachMETreatME #pwME #SevereME #MEKills #DontLetMEDie #JohnVsJonVsME
On a light red background, text that reads: "When I talk about social abandonment in M.E., I don’t mean the loss of contact and support from many friends and relatives (though that is also a part of the story, as with perhaps all chronic illnesses and even acute ones.) I mean that Myalgic Encephalomyelitis is a devastating and neglected neuroimmune illness with no FDA-approved treatments for which almost nobody but the most affected advocate for progress in research and care. People with M.E. don’t die quickly, but M.E. destroys lives, destroys the possibility of engaging with the world, and eventually #MEkills. Will you join MEAction, World ME Alliance, and other M.E. and IACC orgs in their calls for action on May 12, World M.E. Day? The #MillionsMissing need healthy allies to recognize this is a global health and human rights scandal and join the fight for change."
April 13, 2025 at 6:38 PM
jopriestley.bsky.social
Possibly weird question for people smarter than me: I've been content on training migraine service dogs recently, is this something that could be replicable for PEM in ME/CFS? I keep thinking about how valuable getting an early warning that you might be triggering PEM is
#pwME #mecfs #servicedogs
May 5, 2025 at 12:30 PM
Reposted by Jo
exceedhergrasp1.bsky.social
I'd probably only trust someone like Jamie Ducharme to write this one. The psychologization of severe-presenting #MECFS and #LongCOVID. Worth a read. 🧪

Props to Rivka Solomon, and other people with lived experience who spoke.

time.com/7206080/long...
Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards
The chronic illnesses that make doctors doubt their patients often start after what “should” be a short-lived sickness—like COVID-19.
time.com
January 14, 2025 at 4:56 PM
Reposted by Jo
bhanlon15.bsky.social
TIME: 'Why We Need to Remember the Physical Effects of Polio'

'And more recently, we have seen how those with Long COVID often struggle with symptoms such as fatigue and brain fog"

time.com/7205614/we-n...
Why We Need to Remember the Physical Effects of Polio
A doctor and professor explains how we have forgotten the contagious and painful symptoms of Polio.
time.com
January 9, 2025 at 3:35 PM
Reposted by Jo
teenvogue.com
These teenagers and young men — 95% of whom are Black, Latinx, or Filipino — earn between $2.20 and $4 per hour, plus an additional $1 an hour when they’re actively fighting fires, according to the DJJ. ⤵️
In California, Incarcerated Teenagers Help Fight Wildfires
"You’re put in danger every time you’re on the fire line.”
www.teenvogue.com
January 8, 2025 at 6:51 PM
Reposted by Jo
exceedhergrasp1.bsky.social
Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with
Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...
Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant...
www.mayoclinicproceedings.org
October 7, 2023 at 4:03 PM