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

I’m an ambulatory wheelchair user myself.

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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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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 · 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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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 · 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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ThereForME @thereforme.bsky.social · 30/11/2024

The Xmas season can be really hard for those dealing with ME or Long Covid so we hope this advent calendar can bring a little joy. Tomorrow we’ll see who is behind the first door in our #ThereForME advent calendar. We'll give you a little clue later! Who would you like to see there?

It’s an advent calendar. The same Christmas tree as in yesterday’s post appears on a snowy landscape with a starry backdrop. Next to the tree lie two presents, one is labelled “research”, the other “patient safety”. Overlaid are 24 empty polaroid style frames, numbered 1-24.

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Restless Sands @restlesssands.bsky.social · 29/11/2024

It can be very frightening when you depend on a mobility device and it fails. Enormous gratitude to a very kind stranger who assisted me when my scooter broke down. He pushed it home safely and a neighbour stopped to give me a ride.

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Tom Kindlon @tomkindlon.bsky.social · 21/10/2024

It's been great to see the influx of people from the ME/CFS and long Covid community in the last week. Here's a starter pack by @chromatowski.bsky.social that's worth checking out: bsky.app/starter-pack... It lists interesting people to follow and also has a feed #MEcfs #CFS #PwME #LongCovid 1/

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Restless Sands @restlesssands.bsky.social · 28/11/2024

UK focused article on the biopsychosocial model of disability resulting in #MyalgicEncephalomyelitis & now #LongCovid having no appropriate medical pathways to care. www.scottishlegal.com/articles/dav...

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George Monbiot @georgemonbiot.bsky.social · 15/11/2024

Here's my column this week, about the astonishing moment in which we find ourselves: facing the greatest predicament humankind has ever confronted, and doing sweet FA about it. www.theguardian.com/commentisfre...

theguardian.com

Picture an all-seeing eye scanning the dying Earth – and then lighting on our ‘solutions’ at Cop29 | George Monbiot

What would it witness in Azerbaijan? A species that knows it is destroying itself but is too greedy to change course, says Guardian columnist George Monbiot

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ashley fairbanks @ziibiing.com · 14/11/2024

Māori MPs briefly suspended the Aotearoa parliament’s attempts to reinterpret their founding treaty in the most bad ass use of the Haka I’ve ever seen.

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Kelly @broadwaybabyto.bsky.social · 13/11/2024

When you’re chronically ill - your baseline is everything. You will protect it at all costs. Non disabled people can’t understand how much independence and autonomy means to us. Whatever small amount we have left - is priceless. That’s why we don’t take necessary risks. We know what’s at stake.

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ME Foggy Dog @mefoggydog.bsky.social · 10/11/2024

✨ People with M.E. deserve hospitals that understand their needs. The M.E.-Friendly Hospital Charter is key to improving care standards. Let’s make it known! #PwME #MEcfs More info and template letter -

buff.ly

M.E.-Friendly Hospital Charter | ME Foggy Dog

It's intended to relieve M.E. patients of self-advocacy burdens by ensuring hospitals adhere to compassionate and M.E. appropriate care standards.

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Sabrina Poirier @sabrinapoirier.bsky.social · 12/11/2024

I have started a Starter Pack for ME and Long COVID. 💙 It includes some mutuals with other packs but also some new faces too. :) Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙 go.bsky.app/6R7bqc7

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