iiinova — where your digital self keeps evolving

Reposted by Leonie Potgieter

Walk for ME @walk4me.bsky.social · 17/02/2025

Do you know someone who could Walk for ME? Find out more: www.facebook.com/WalkforMEUK/ www.walkforme.co.uk Instagram @walk_for_me_ X @Walk_4_ME BlueSky @walk4me.bsky.social Huge thanks to Ian Peters via @despicablemebsky.bsky.social ky.bsky.social for the video!

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Reposted by Leonie Potgieter

Lucibee @lucibee.bsky.social · 10/12/2024

Please watch. Karen Gordon is not the only person with very severe ME in the UK at the moment. But there are no specialist centres in the UK that can treat people so severely affected. Karen's family have set up a petition here: www.change.org/p/save-karen...

change.org

Sign the Petition

Save Karen Gordon from Dying of Malnutrition and Dehydration due to NHS Failings.

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Reposted by Leonie Potgieter

Adam @abrokenbattery.bsky.social · 09/12/2024

SKY News segment on #MECFS (20 mins), Includes interview with Heather Gordon, whose daughter Karen has effectively been trapped in hospital for a year with severe ME. Also features Chris Ponting and Anna Gregorowski from BACME. youtu.be/FX6Fk9-WSmo?...

youtu.be

SKY News Karen Gordon

YouTube video by Broken Battery

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Reposted by Leonie Potgieter

Adam @abrokenbattery.bsky.social · 10/12/2024

Clip from SKY News segment on #MECFS 'We were told by many people that the current treatment they're receiving is harmful.' The lead researcher on the Decode ME Study, Professor Chris Ponting, outlines the responses he has received from ME patients on their care.

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Reposted by Leonie Potgieter

Carole Bruce @cabruce.bsky.social · 18/11/2024

@georgemonbiot.bsky.social described this as one of the most disturbing he has ever covered. It’s about #ME and how the views of a weird sect affected science, medicine and the media with a devastating effect on patients. It continues to erase the reality of our lives. #medicine #media #pwME

theguardian.com

Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot

Chronic fatigue syndrome is as physiological as a broken leg. We must learn all we can from this tragic case, says Guardian columnist George Monbiot

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Reposted by Leonie Potgieter

George Monbiot @georgemonbiot.bsky.social · 19/11/2024

What gets to me most is that the UK government enabled foreign states to loot our essential infrastructure, milking it for profit and leaving it in ruins. Those states must think we're insane. The Chinese government would never let us walk in and seize its assets. But we've let it do just that.

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Reposted by Leonie Potgieter

Carole Bruce @cabruce.bsky.social · 19/11/2024

I can’t recommend the #ThereForME’s weekly substack posts highly enough.Informative, upbeat and honest. These 3 women have done more for #ME in 4months than I would have thought possible. A truly democratic setup too. Do sign on for free. #ME #LongCovid 👇

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Reposted by Leonie Potgieter

Alisontomyradioooo @arisonsned.bsky.social · 18/11/2024

Please follow Mike! He is an incredible Human who has run over 9000 miles to raise money for @investinmeresearch.bsky.social over ten years raising over £50k to help #pwme #myalgicE 💙

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Reposted by Leonie Potgieter

Julie Rehmeyer @julierehmeyer.bsky.social · 07/10/2023

With some help from @owasow.bsky.social, I've figured out how to use Sky Follower Bridge to find the people I follow on Twitter over on B l u e S k y. It's pretty easy. I've updated the tips I send folks when they get their code with info on how to do it, and I thought I'd share here too.

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Tom Kindlon @tomkindlon.bsky.social · 09/10/2023

#DecodeME needs more UK participants with an ME/#CFS diagnosis, incl. those diagnosed following Covid infection, & reminds people who have been sent a spit kit to return them. Final date for submitting the questionnaire is 15th November at 5pm www.decodeme.org.uk/portal/ #MEcfs #MyalgicE #PwME

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Reposted by Leonie Potgieter

allyann @allyann.bsky.social · 02/10/2023

Feeds that may interest the ♿️ community include: #Disability Feed bsky.app/profile/did:... #ChronicIllness bsky.app/profile/did:... #MECFS bsky.app/profile/did:... LongCovid bsky.app/profile/did:... Covid Cautious bsky.app/profile/did:... Disability Justice bsky.app/profile/did:...

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