iiinova — where your digital self keeps evolving

Phil P @pprydderch.bsky.social · 01/02/2025

Well done today @Wrexham_AFC v @crawleytown. 🙌 I had away tickets (thanks Kerry 🙏) for me, kids & wife as we live local, but unfortunately was too ill to go. I hate chronic illness #MECFS. 😢 Great to see the new forwards in action & nick an important Away win! ⚽️ 🏴󠁧󠁢󠁷󠁬󠁳󠁿 #WrexhamAFC @WrexhamFX

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Phil P @pprydderch.bsky.social · 27/11/2024

… any suggestions welcome. Though bear in mind I’m struggling badly with ME too so might not always reply etc. /2 #MECFS #pwME #GreatestMEdicalScandal #Petition @georgemonbiot.bsky.social @thetimes.com #chronicillness #MyalgicEncephalomyelitis #MaeveInquiry

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Phil P @pprydderch.bsky.social · 27/11/2024

Gov petition website is open again. Thinking of creating petition for public inquiry into the scandal of ME/CFS treatment. Whether it does anything is another matter I want to try to get the wording right to give it a chance Here’s a first draft (will likely have mistakes!) /1

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Phil P @pprydderch.bsky.social · 21/11/2024

Good grief. That’s unbelievable that the chair of the MEA was saying back in 2019 and allowed to continue - “I get up no matter how ill I feel” is appalling advice for #pwME - @meassociation.bsky.social - please take a serious look at this. This months column is not a one off.

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Phil P @pprydderch.bsky.social · 18/11/2024

There is a an open letter by @alexis___me (X) that at the time of posting has 388+ signatures. Please add your name so we can show clearly the anger and concern this has caused. I hope MEA and their chairman take this seriously docs.google.com/forms/d/e/1F... #pwME #MyalgicEncephalomyelitis /3

docs.google.com

Letter to ME Association regarding comments made by their chairman

If you would like to sign please add your name below. You can read the original column this is responding to here: https://bit.ly/MEAcolumn Dear ME Association We are writing to you as patients wi...

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Phil P @pprydderch.bsky.social · 18/11/2024

… and wrong. He even admits it will cause this uproar and anger. Well, if you knew this would cause such a level of anger - from people who actually fund the charity with donations (!) - then why did you write it? Did anyone at MEA proof read this and raise concern? /2

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Phil P @pprydderch.bsky.social · 18/11/2024

This is truly shocking from one of, if not the, leading UK #MECFS charity I’ve been a supporter of @MEAssociation since I became ill in 2018/2019. My wife and eldest son fund raised for them, raising £2k on a charity walk. This from their chairman is totally tone deaf… /1

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Phil P @pprydderch.bsky.social · 11/11/2024

when I left, doing the same things they were doing back then. ‘Cause it feels like everything has paused until I get better. But it isn’t. It would be like coming out of isolation into a different world in many ways. #pwME #MECFS #chronicillness #health

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Phil P @pprydderch.bsky.social · 11/11/2024

Being mod/severe chronically ill feels like we’re on pause, but life is carrying on around us. I’ve often felt if I miraculously got well, and tried to “rejoin” life, go back to my job (not that I could - had to ill health retire), my mind would be expecting to see all the people who were there../1

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Phil P @pprydderch.bsky.social · 11/11/2024

Finally opened my BlueSky account. Twitter/X has become a cesspit since Musk took over and is getting worse. But it’s a good place for #MECFS & #chronicillness community, so it’s such a shame. Hoping we can slowly recreate that here. #pwME #MyalgicEncephamylitis

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