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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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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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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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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.

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

Tom Kindlon @tomkindlon.bsky.social · May 28

I’m an ambulatory wheelchair user myself.

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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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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

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

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Reposted by Restless Sands

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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Restless Sands @restlesssands.bsky.social · May 9

#MEAwarenessMonth #MyalgicEncephalomyelitis #LongCovidME #Pacing

longcovid.physio/pacing

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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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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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Restless Sands @restlesssands.bsky.social · May 7

#LongCovid #MEAwarenessMonth

Patient-Led Research Collaborative @patientled.bsky.social · May 7

New PLRC-funded work out from Rob Wust & team!

Skeletal muscles in #LongCovid and ME *differ* from skeletal muscles induced by bedrest.

LC and ME is not deconditioning! 1/
www.medrxiv.org/content/10.1...

Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest

Patients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a reduced exercise capacity, skeletal muscle abnormalities and post-exertional malaise (PEM), where...

www.medrxiv.org

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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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Restless Sands @restlesssands.bsky.social · May 6

Here they are, proud of their evil work.

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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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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Restless Sands @restlesssands.bsky.social · May 3

#MEAwarenessMonth #BringMEoutOfTheShadows

Reposted by Restless Sands

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

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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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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www.facebook.com

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

Restless Sands @restlesssands.bsky.social · Mar 6

www.facebook.com/share/18Xpww...

#MyalgicEncephalomyelitis #ScopingSurvey #NewGuideLines commentary by David Tuller

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www.facebook.com

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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.

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Restless Sands @restlesssands.bsky.social · Feb 18

Great work! Love the giant postcard too.

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