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restlesssands.bsky.social
Restless Sands
@restlesssands.bsky.social
66 followers 160 following 62 posts
Myalgic Encephalomyelitis 🔰 Patient advocate 🔰 Championing biological science over dogma 🔰 International Consensus Criterion #ICC 🔰 90% homebound to manage moderate ME. Acute onset, post viral 2012 🔰
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · Sep 2
8 Products That Can Bring Comfort to Life www.nytimes.com/2025/08/28/s...

#AssistiveTech 💡
#MyalgicEncephalomyelitis
#LongCovid
8 Products That Can Bring Comfort to Life
www.nytimes.com
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · Jul 30
@erinmg.bsky.social Hi Erin, I’d like to ask you to join a SevereME/LC Awareness webinar panel on 30/08/25. Unsure how to navigate in this platform but hope you see this and may respond for details.
Kindly, Sandra
ME Group Australia
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Reposted by Restless Sands
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · Jun 1
. @michelleb4.bsky.social of @physiosforme.bsky.social gave a talk hosted by the Sheffield ME and FM group on 20th May titled: Using national & international best practice to improve services locally with special mention of physiotherapy. 1 hour.

www.youtube.com/watch?v=Y-M-...
#MEcfs #PwME #CFS
A talk from Dr Michelle Bull - Physios for ME
YouTube video by Sheffield ME & Fibromyalgia Group
www.youtube.com
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · Jun 1
International Consensus Criteria ICC with the International Consensus Primer ICP best define myalgic encephalomyelitis. All other definitions are too broad.
restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · Jun 1
CFS was ME originally, then high jacked for several decades… a long and shocking history here 🥸
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Reposted by Restless Sands
tomkindlon.bsky.social
Tom Kindlon @tomkindlon.bsky.social · May 28
I’m an ambulatory wheelchair user myself.
WHEELCHAIR does not equal GLUED TO CHAIR IT'S NOT "A MIRACLE" WHEN WE STAND TO REACH SOMETHING. ' IT'S NOT A CRIME WHEN WE Stand to reach something. OVER 70% OF WHEELCHAIR USERS ARE AMBULATORY, MEANING THAT WE CAN STAND OR WALK TO SOME DEGREE. IT DOESN'T MEAN IT'S SAFE OR PAINLESS TO DO SO. THE ABLEISM IS WELCOME TO STOP ANYTIME. Demon Dog Duo logo
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · May 28
Particularly with energy limiting conditions, mobility devices are often used by ambulatory people.
I’ve got legs, they just don’t take me very far without massive repercussions from Post Exertional Neuroimmune Exhaustion.
#MyalgicEncephalomyelitis
#InternationalConsensesCriteria
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · May 21
virology.ws/2025/05/21/t...
Trial By Error: BMJ Publishes New Propaganda Piece on Severe ME/CFS | Virology Blog
By David Tuller, DrPH Last week, The BMJ published a commissioned propaganda piece—er, “opinion”—written by confirmed members of the cognitive behavior ther ...
virology.ws
restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · May 14
Post Exertional Symptom Exacerbation #PESE or #PEM explained really well. Show you clinicians 💙

#MyalgicEncephalomyelitis
#LongCovid
#MEAwarenessMonth

youtube.com/watch?v=tcXn...
Implementing Pacing to Prevent PEM - Dr. Todd E. Davenport
YouTube video by The ME Action Network
youtube.com
2 6
Reposted by Restless Sands
minetodo.bsky.social
Cynthia Johnson @minetodo.bsky.social · Apr 5
Stand By ME/CFS!
Please take a look at my Stand By ME/CFS video: youtu.be/s9cMmFDI4rk
And become an ally in 2025!
With gratitude, Cynthia 💛

#StandByMEcfs #GlobalVoiceForME #TeachMETreatME
#StillSickStillFighting #MillionsMissing #ForgetMEnot #MEcfs #MyalgicEncephalomyelitis #EndMEcfs
Stand By ME/CFS | Cynthia Johnson, Edge Prize 2023
YouTube video by The Edge Prize
youtu.be
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · May 9
#MEAwarenessMonth #MyalgicEncephalomyelitis #LongCovidME #Pacing

longcovid.physio/pacing
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · May 9
#MEAwarenessMonth #MyalgicEncephalomyelitis #LongCovid

#bringMEoutoftheSHADOWS

youtu.be/56u6g0POvo0?...

…It's a beautiful world we live in

A sweet romantic place

Beautiful people everywhere

The way they show they care

Makes me want to say

It's a beautiful world

For you

It's not for #ME
Devo - "Beautiful World"
YouTube video by Edgar Aldrett
youtu.be
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · May 8
We have a letter urging Dr. Bhattacharya to allocate $50 million to fund the ME/CFS Research Roadmap.

Sign our new letter now: bit.ly/MEcfsRoadmap

#MEAwarenessMonth #bringMEoutoftheshadows
#MyalgicEncephalomyelitis
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · May 7
#LongCovid #MEAwarenessMonth
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Reposted by Restless Sands
abrokenbattery.bsky.social
Adam @abrokenbattery.bsky.social · May 6
#MECFSAwarenessMonth – Day 6
1993-96: Wessely lobbied the UK government to reject ME as a neurological disorder and led an influential report that downplayed biomedical causes, pushed psychological treatments, and resulted in the virtual disappearance of ME for the next decade.
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · May 6
Here they are, proud of their evil work.
restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · May 5
#MEAwarenessMonth #LongCovid youtube.com/watch?v=4XWH...
Long Covid’s Invisible Toll on Public Health | David Putrino | TEDxSantaBarbaraSalon
YouTube video by TEDx Talks
youtube.com
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · May 4
youtu.be/7pDkqIiRHXw
#LongCovid #MyalgicEncephalomyelitis
#BringMEoutoftheSHADOWS
#MEAwarenessMonth
Andrew Ewing and David Joffe discuss a "global expert consensus" on Long Covid
YouTube video by David M Tuller
youtu.be
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · May 3
#MEAwarenessMonth #BringMEoutOfTheShadows
Reposted by Restless Sands
emilyesfraser.bsky.social
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · Apr 1
Thank you @thesicktimes.bsky.social for featuring @johnvsjonvsme.bsky.social and to my lovely co-conspirators for writing this explainer!

#JohnVsJonVsME
#GreatestMEdicalScandal
thesicktimes.org The Sick Times @thesicktimes.org · Apr 1
In a crisis-filled world, breaking through the noise requires creativity, strategy — and, occasionally, a really good meme. This is why the #JohnVsJonVsME campaign began. bit.ly/4hTwUxa
A black background with neon purple and turquoise gaming-esque framing features photos of John Oliver and Jon Stewart facing off. White text reads, “The Sick Times. The history of ME deserves a late-night spotlight. That’s why we started the #JohnVsJonVsME campaign. by Eliza Charley, Emily Fraser, Julie, Katie Klocksin, Melissa Mazur, María Richardson.” White text inside a neon colored speech bubble reads, "Medical professionals don’t just neglect people with ME but often only offer them harmful treatments like cognitive behavioral therapy or graded exercise therapy. COVID-19 has added millions of new people with ME to the millions already sick, making coverage of this scandal imperative now more than ever." - #JohnVsJonVsME Core Planning Group: Eliza Charley, Emily Fraser, Julie, Katie Klocksin, Melissa Mazur, and María Richardson
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · Mar 12
Karen Gordon: Update on UCLH decision to not provide home based IV feeding

Petition 🆘‼️ #Feed&SaveKarenGordon

meassociation.org.uk/hebr

#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis #SevereME #Malnutrition #TotalParenteralNutrition #TPN

www.facebook.com/share/p/1JDg...
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restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · Mar 8
#MyalgicEncephalomyelitis #NICEGuidlines #GradedExercise www.thecanary.co/uk/analysis/...
Government hit with formal complaint over discredited NHS treatments for ME/CFS
A long-time ME/CFS campaigner has submitted a complaint over the lack of a reporting mechanism for non-pharmaceutical treatment harms.
www.thecanary.co
restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · Mar 6
www.facebook.com/share/18Xpww...

#MyalgicEncephalomyelitis #ScopingSurvey #NewGuideLines commentary by David Tuller
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darbysaxbe.bsky.social
Darby Saxbe @darbysaxbe.bsky.social · Feb 4
🚨BREAKING. From a program officer at the National Science Foundation, a list of keywords that can cause a grant to be pulled. I will be sharing screenshots of these keywords along with a decision tree. Please share widely. This is a crisis for academic freedom & science.
list of banned keywords
1.3K 16K 28K
restlesssands.bsky.social
Restless Sands @restlesssands.bsky.social · Feb 18
Great work! Love the giant postcard too.
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