iiinova — where your digital self keeps evolving

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Tom Kindlon @tomkindlon.bsky.social · 01/06/2025

. @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

youtube.com

A talk from Dr Michelle Bull - Physios for ME

YouTube video by Sheffield ME & Fibromyalgia Group

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Restless Sands @restlesssands.bsky.social · 01/06/2025

International Consensus Criteria ICC with the International Consensus Primer ICP best define myalgic encephalomyelitis. All other definitions are too broad.

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Restless Sands @restlesssands.bsky.social · 01/06/2025

CFS was ME originally, then high jacked for several decades… a long and shocking history here 🥸

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Tom Kindlon @tomkindlon.bsky.social · 28/05/2025

I’m an ambulatory wheelchair user myself.

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Restless Sands @restlesssands.bsky.social · 28/05/2025

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 · 09/05/2025

#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

youtu.be

Devo - "Beautiful World"

YouTube video by Edgar Aldrett

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Restless Sands @restlesssands.bsky.social · 08/05/2025

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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Adam @abrokenbattery.bsky.social · 06/05/2025

#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 · 06/05/2025

Here they are, proud of their evil work.

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 01/04/2025

Thank you @thesicktimes.bsky.social for featuring @johnvsjonvsme.bsky.social and to my lovely co-conspirators for writing this explainer! #JohnVsJonVsME #GreatestMEdicalScandal

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Restless Sands @restlesssands.bsky.social · 12/03/2025

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...

facebook.com

Redirecting...

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Darby Saxbe @darbysaxbe.bsky.social · 04/02/2025

🚨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 · 18/02/2025

Great work! Love the giant postcard too.

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Restless Sands @restlesssands.bsky.social · 22/01/2025

“Very Severe ME patient Line aged 26 from Denmark (@nebulow on IG) has appealed to the international ME and Long Covid community to help prevent her being involuntarily removed to a psychiatric hospital from the nursing home she has been living in for the past 10 months.”

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Billy Hanlon @bhanlon15.bsky.social · 15/01/2025

Health Rising: 'A “Scarred Landscape” … Epigenetic T-Cell Study Moves the ME/CFS Field Forward' "...the authors wrote that “validating T-cell exhaustion in ME/CFS could open the door to the use of drugs that can return them to proper functioning” www.healthrising.org/blog/2025/01...

healthrising.org

A "Scarred Landscape" ... Epigenetic T-Cell Study Moves the ME/CFS Field Forward - Health Rising

Evidence indicating that the T-cells in ME/CFS are exhausted could lead to new treatment options.

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Covid-Safer SF/Bay Area @covidsafersf.bsky.social · 14/01/2025

A great interview with @violetblue.bsky.social. Her Covid Safety Handbook covers Covid boundaries in such a terrific and helpful way, with lots of incredibly useful sample scripts and templates for those conversations. www.barnesandnoble.com/w/the-covid-...

barnesandnoble.com

The Covid Safety Handbook: Staying Safe In An Unsafe World|Paperback

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Restless Sands @restlesssands.bsky.social · 14/01/2025

Jaime thank you for your work! I’ve popped comments in this thread that may help everyone understand the background of the problems we face now. IMO bringing this information from various excellent sources into awareness will help us undo the damage. We must create a path of science over dogma.

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Restless Sands @restlesssands.bsky.social · 14/01/2025

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 14/01/2025

A lot of the general initiatives originating from the middle at NIH seem well-meant and likely to be helpful; but issues at the top lead to systemic issues, leading to issues with what is funded, leading to issues with representative research. Deeply troubling.

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Restless Sands @restlesssands.bsky.social · 14/01/2025

The answers are in Hillary Johnson’s Osler’s Web. If anyone invested in our future has not read it, please see The Why. It’s an updated, cutdown version of Osler’s Web. www.oslersweb.com/hillary-john...

oslersweb.com

Hillary Johnson

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Restless Sands @restlesssands.bsky.social · 14/01/2025

It’s all about money. That Bio psychosocial therapies are cheaper may have been effective in the past decades does NOT add up now with the sheer volume of disability stemming from Long Covid.

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Restless Sands @restlesssands.bsky.social · 14/01/2025

If they are intelligent people, how can they be so clueless?

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Restless Sands @restlesssands.bsky.social · 14/01/2025

The Bio psychosocial model has left the BIO out of the picture for a very long time. Vested interests… a picture speaks a thousand words. This is the UK mob whose influence has infected many countries.

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Restless Sands @restlesssands.bsky.social · 14/01/2025

Outrageous omission! The cardinal defining symptom of Myalgic Encephalomyelitis is missing??? What disease, disorder, dysfunction are they ACTUALLY studying? #PEM Post Exhertional Malaise #PENE Post Exhertional Neuroimmune Exhaustion

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Restless Sands @restlesssands.bsky.social · 14/01/2025

Difficult to respect Nath after the “effort preferance” debacle and his response to patient backlash. Dr Mark Donohoe of Mosman, Australia is the only GP I’ve encountered who understands what blood tests to order, which lab to order from and importantly how to interpret results. #NK #CD4 #CD8

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Restless Sands @restlesssands.bsky.social · 13/12/2024

On the seventh day of illness My ME gave to me New Facebook friends Who really comprehend No more condescends From my now ex-local GP By Bill Clayton /end

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Restless Sands @restlesssands.bsky.social · 13/12/2024

On the fifth day of illness My ME gave to me Hit by a train Huge energy drain Rolled eyes from my local GP On the Sixth day of illness My ME gave to me Beaten up and bruised Just so confused No Concentration Illness my creation Were the thoughts of my local GP /3

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Restless Sands @restlesssands.bsky.social · 13/12/2024

On the third day of illness My ME gave to me Legs that won't go Body on Go Slow And another shrug from local GP On the fourth day of illness My ME gave to me A body set to wilt A big dose of guilt And drugs from my local GP /2

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Restless Sands @restlesssands.bsky.social · 13/12/2024

It’s time for our annual sing song ! ME.rry Christmas ! On the first day of illness My ME gave to me A shrug from my local GP On the second day of illness My ME gave to me A shed load of pain A bog for a brain And a shrug from my local GP /1

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Karen Hargrave @karenlhargrave.bsky.social · 07/12/2024

This morning Santa delivered a #ThereForME Christmas card from across the pond 🎅✈️ Big thanks to @putrinolab.bsky.social for joining the #ThereForME advent calendar! Our little team are big big fans 🤩

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Alexis Gilbert @alexisme.bsky.social · 04/12/2024

In PEM from advocacy last few weeks but just coming on to share this follow up letter and petition to ME Association calling for accountability and action. www.change.org/p/me-associa...

change.org

Sign the Petition

ME Association Chair Neil Riley must step down

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