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Stephen MIA

@stephenmia.bsky.social

1.5K followers 420 following 210 posts

Former Skier, Cyclist, Climber, Hill Walker, Diagnostic Radiographer and functioning human. Now - ME, POTS, LC, Vax Injury - Pro Vax - Still finding the joy

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Reposted by Stephen MIA

ThereForME @thereforme.bsky.social · May 20

Our latest #ThereForME blog gives an update from a busy few weeks.

Ft. the @libdems.org.uk and @tessamunt.bsky.social!

Link in next post 👇

Stephen MIA @stephenmia.bsky.social · May 14

Sad but unfortunately not surprising from the @bmj.com . They have at least been consistent.

Stephen MIA @stephenmia.bsky.social · May 9

Stephen MIA @stephenmia.bsky.social · May 9

Sometimes despite it all I can still feel lucky. I might not be at the top of the mountain but I can still look at it and appreciate it.

Reposted by Stephen MIA

DecodeME @decodemestudy.bsky.social · Mar 25

We’re the world's largest genetic study of ME/CFS. We’ll be sharing our findings on here when available, so follow DecodeME to find out more about our study in the meantime, and help our science reach more people in the #MECFS community.
🧬
#DecodeME #MECFS #pwME #myalgicencephalomyelitis

Stephen MIA @stephenmia.bsky.social · Mar 20

Good luck Cleo, I hope it’s not too bad.

Stephen MIA @stephenmia.bsky.social · Mar 20

Thanks Steve, I think perhaps I was a bit naive in my assessment.

Stephen MIA @stephenmia.bsky.social · Mar 20

The Nurse who assessed me dropped into the conversation that would I be able to make toast. I said theoretically on a good day it would be possible. That meant I could make hot meals apparently. Never mind that good days can be counted on one hand in a year!

Stephen MIA @stephenmia.bsky.social · Mar 20

Just going by the scores I got in my last PIP assessment. They didn’t seem to take account of any fluctuations. Anything I said I could do on my very best days were written up as my abilities. Total nonsense of course but 🤷‍♂️

Stephen MIA @stephenmia.bsky.social · Mar 19

Thanks, I’m glad you found an answer, that must be very validating at the very least.

Stephen MIA @stephenmia.bsky.social · Mar 19

Great stuff David, looking forward to seeing it.

Stephen MIA @stephenmia.bsky.social · Mar 19

So clear and informative, you guys give me a glimmer of hope in dark times . Thanks for your tireless ( although tiring I’m sure!) advocacy.

Stephen MIA @stephenmia.bsky.social · Mar 19

I really hope Scotland continues to stand up for the disabled. So far their track record is good - I’m just the other side of the border, or as I know think of it the wrong side of the border.

Stephen MIA @stephenmia.bsky.social · Mar 19

Thank you I appreciate that. I’m sure I’m far from unique here, there must be thousands more out there in similar situations.

Stephen MIA @stephenmia.bsky.social · Mar 19

Im unable to sit up for more than a minute.
I completely rely on my wife to cook and prepare food for me.
I am able to shower any more than an average of once every 2 weeks.
Dark room, in bed every day.

I will not qualify for PIP.
I will be expected to look for work.

Stephen MIA @stephenmia.bsky.social · Mar 19

I am unable to have any lights on.
Conversations have to be short and quiet or I become much worse.
I have been unable to leave the house for 2 years and counting.
I am in pain all my waking hours.
I sleep between 14-16 hours every day.
I’m unable to stand for more than 1 minute.

Stephen MIA @stephenmia.bsky.social · Mar 19

The Government say that those ‘genuinely in need’ will still be helped.
Well let me paint a picture for you.
As a former Radiographer I became disabled in 2021 after a Covid Vaccine I took to help stop the spread of Covid to vulnerable patients.
I am now in bed 24/7.
I am untableto watch tv

Stephen MIA @stephenmia.bsky.social · Mar 18

So I won’t qualify for PIP with these new rules despite being bedbound. What do I do now, there’s no way I can work at all. What will happen to me?

Stephen MIA @stephenmia.bsky.social · Mar 15

In just one irony in a series of ironies today (Long Covid Awareness Day) 4 years ago I had a Covid booster that gave me the gift of ME/CFS and POTS.
I have lost so much including a job I loved working in the NHS.
Solidarity to all those who have been similarly harmed by the Covid Virus.

Stephen MIA @stephenmia.bsky.social · Jan 1

No, I should have realised that your intention wasn’t what I jumped to. It’s just a difficult place to be, I’ll try to make 2025 a year I don’t jump to conclusions!

Reposted by Stephen MIA

Todd Davenport @sunsopeningband.bsky.social · Jan 1

Of course this post doesn’t acknowledge ME/CFS related to vaccination is real and the risks of vaccination in people with pre-existing ME/CFS are real, but only responds to the argument used to dismiss infection associated chronic diseases that they are just from vaccination.

Still, Happy New Year.

Todd Davenport @sunsopeningband.bsky.social · Jan 1

On this fifth anniversary of COVID-19 emergence, and while we’re waiting briefly for the other shoe to drop on human to human transmission of H5N1, here’s your reminder that pandemic influenza also causes ME/CFS but not the flu vaccine. But happy new year and stuff. pubmed.ncbi.nlm.nih.gov/26475444/

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is associated with pandemic influenza infection, but not with an adjuvanted pandemic influenza vaccine - PubMed

Pandemic influenza A (H1N1) infection was associated with a more than two-fold increased risk of CFS/ME. We found no indication of increased risk of CFS/ME after vaccination. Our findings are consiste...

pubmed.ncbi.nlm.nih.gov

Stephen MIA @stephenmia.bsky.social · Jan 1

Thanks Todd, appreciated and acknowledged

Stephen MIA @stephenmia.bsky.social · Jan 1

And it’s way worse when those people do it.

Stephen MIA @stephenmia.bsky.social · Jan 1

That’s great, I really hope it’s achievable for you. I live right on the Scottish border so Edinburgh is somewhere I know quite well, it’s a really excellent place to explore. Watch out for all the hills though!

Stephen MIA @stephenmia.bsky.social · Jan 1

Thank you, I’ll take a look.