Stephen MIA
@stephenmia.bsky.social
Former Skier, Cyclist, Climber, Hill Walker, Diagnostic Radiographer and functioning human. Now - ME, POTS, LC, Vax Injury - Pro Vax - Still finding the joy
Reposted by Stephen MIA
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 👇
Ft. the @libdems.org.uk and @tessamunt.bsky.social!
Link in next post 👇
May 20, 2025 at 8:18 AM
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 👇
Ft. the @libdems.org.uk and @tessamunt.bsky.social!
Link in next post 👇
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.
May 9, 2025 at 9:56 AM
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
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
🧬
#DecodeME #MECFS #pwME #myalgicencephalomyelitis
March 25, 2025 at 3:42 PM
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
🧬
#DecodeME #MECFS #pwME #myalgicencephalomyelitis
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
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
March 19, 2025 at 7:09 AM
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
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
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?
March 18, 2025 at 10:47 PM
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?
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.
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.
March 15, 2025 at 5:00 PM
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.
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.
Reposted by Stephen MIA
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.
Still, Happy New Year.
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
January 1, 2025 at 10:02 AM
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.
Still, Happy New Year.
Reposted by Stephen MIA
VAX HORROR Traumatised Scots ‘gaslit’ by health bosses after horror complications from Covid vaccine
www.thescottishsun.co.uk/news/1402807...
Thank you @binitakane.bsky.social for speaking up for the vaccine injured 🙏🏻
www.thescottishsun.co.uk/news/1402807...
Thank you @binitakane.bsky.social for speaking up for the vaccine injured 🙏🏻
December 29, 2024 at 10:10 PM
VAX HORROR Traumatised Scots ‘gaslit’ by health bosses after horror complications from Covid vaccine
www.thescottishsun.co.uk/news/1402807...
Thank you @binitakane.bsky.social for speaking up for the vaccine injured 🙏🏻
www.thescottishsun.co.uk/news/1402807...
Thank you @binitakane.bsky.social for speaking up for the vaccine injured 🙏🏻
Hope I can spend half an hour with my wife and son tomorrow. It’ll be in a low lit room from my bed. This is by no means guaranteed.
I don’t think people realise just what our lives are like.
And I consider myself lucky to have loved ones around me, many don’t have that.
Thinking of all pwME/LC
I don’t think people realise just what our lives are like.
And I consider myself lucky to have loved ones around me, many don’t have that.
Thinking of all pwME/LC
December 24, 2024 at 8:18 PM
Hope I can spend half an hour with my wife and son tomorrow. It’ll be in a low lit room from my bed. This is by no means guaranteed.
I don’t think people realise just what our lives are like.
And I consider myself lucky to have loved ones around me, many don’t have that.
Thinking of all pwME/LC
I don’t think people realise just what our lives are like.
And I consider myself lucky to have loved ones around me, many don’t have that.
Thinking of all pwME/LC
I’m part of a Whattsapp group with some friends I’ve known most of my life. We meet up a few times a year and it’s always a really great time.
I haven’t been able to participate since I got ill but I can’t bring myself to delete the group.
They have all moved on now it seems and I’m just a story.
I haven’t been able to participate since I got ill but I can’t bring myself to delete the group.
They have all moved on now it seems and I’m just a story.
December 23, 2024 at 12:59 PM
I’m part of a Whattsapp group with some friends I’ve known most of my life. We meet up a few times a year and it’s always a really great time.
I haven’t been able to participate since I got ill but I can’t bring myself to delete the group.
They have all moved on now it seems and I’m just a story.
I haven’t been able to participate since I got ill but I can’t bring myself to delete the group.
They have all moved on now it seems and I’m just a story.
“ It’s not what happens to you but you how you deal with it that matters”
Something I often used to say but I didn’t realise just how much I would be tested on this principle.
Something I often used to say but I didn’t realise just how much I would be tested on this principle.
December 22, 2024 at 1:08 PM
“ It’s not what happens to you but you how you deal with it that matters”
Something I often used to say but I didn’t realise just how much I would be tested on this principle.
Something I often used to say but I didn’t realise just how much I would be tested on this principle.
I think before we castigate people who aren’t Covid cautious too badly we have to ask ourselves, what would we do?
Many people have been disabled by viruses that we’ve all had. I wasn’t particularly cautious about any virus before Covid.
Our experience colours our judgement.
Many people have been disabled by viruses that we’ve all had. I wasn’t particularly cautious about any virus before Covid.
Our experience colours our judgement.
December 21, 2024 at 12:45 PM
I think before we castigate people who aren’t Covid cautious too badly we have to ask ourselves, what would we do?
Many people have been disabled by viruses that we’ve all had. I wasn’t particularly cautious about any virus before Covid.
Our experience colours our judgement.
Many people have been disabled by viruses that we’ve all had. I wasn’t particularly cautious about any virus before Covid.
Our experience colours our judgement.
My cat used to curl up between my legs, making a little warm nest for himself. Since he died my dog had taken up the mantle.
I have to say it was a lot less uncomfortable when the cat did it!
I have to say it was a lot less uncomfortable when the cat did it!
December 21, 2024 at 10:57 AM
My cat used to curl up between my legs, making a little warm nest for himself. Since he died my dog had taken up the mantle.
I have to say it was a lot less uncomfortable when the cat did it!
I have to say it was a lot less uncomfortable when the cat did it!
Today is one of those days where I remember that this is likely me for the rest of my life.
I distract myself from this reality more than I face it but I can’t keep running away from it.
Yes, I’m aware of all the research. Most diseases get more and they can’t solve them despite knowing the cause
I distract myself from this reality more than I face it but I can’t keep running away from it.
Yes, I’m aware of all the research. Most diseases get more and they can’t solve them despite knowing the cause
December 21, 2024 at 9:42 AM
Today is one of those days where I remember that this is likely me for the rest of my life.
I distract myself from this reality more than I face it but I can’t keep running away from it.
Yes, I’m aware of all the research. Most diseases get more and they can’t solve them despite knowing the cause
I distract myself from this reality more than I face it but I can’t keep running away from it.
Yes, I’m aware of all the research. Most diseases get more and they can’t solve them despite knowing the cause
Before I got ill, I’d spent a year preparing for this. I was literally 3 weeks from the event.
It’s almost comical how different my life is.
And I now have endure Psychiatrists pontificating over me being deconditioned, lacking motivation and enjoying secondary gains!
youtu.be/UMpbgvdHI_o?...
It’s almost comical how different my life is.
And I now have endure Psychiatrists pontificating over me being deconditioned, lacking motivation and enjoying secondary gains!
youtu.be/UMpbgvdHI_o?...
The Definition Of Suffering | Fred Whitton Challenge | Cycling Weekly
YouTube video by Cycling Weekly
youtu.be
December 20, 2024 at 7:15 PM
Before I got ill, I’d spent a year preparing for this. I was literally 3 weeks from the event.
It’s almost comical how different my life is.
And I now have endure Psychiatrists pontificating over me being deconditioned, lacking motivation and enjoying secondary gains!
youtu.be/UMpbgvdHI_o?...
It’s almost comical how different my life is.
And I now have endure Psychiatrists pontificating over me being deconditioned, lacking motivation and enjoying secondary gains!
youtu.be/UMpbgvdHI_o?...
Just had a sneaky look at X for the first time since migrating here.
I’ll not be doing that again, what a truly awful place that is.
I’ll not be doing that again, what a truly awful place that is.
December 20, 2024 at 3:49 PM
Just had a sneaky look at X for the first time since migrating here.
I’ll not be doing that again, what a truly awful place that is.
I’ll not be doing that again, what a truly awful place that is.
Whilst I’d be overjoyed for everyone with Long Covid if we have found the cause and it is indeed Viral Persistence I’d like to just voice a note of caution here.
I have all the same symptoms from a Vaccine. Not similar symptoms, the same symptoms.
It’s one hell of a coincidence if it is one!
I have all the same symptoms from a Vaccine. Not similar symptoms, the same symptoms.
It’s one hell of a coincidence if it is one!
December 20, 2024 at 2:44 PM
Whilst I’d be overjoyed for everyone with Long Covid if we have found the cause and it is indeed Viral Persistence I’d like to just voice a note of caution here.
I have all the same symptoms from a Vaccine. Not similar symptoms, the same symptoms.
It’s one hell of a coincidence if it is one!
I have all the same symptoms from a Vaccine. Not similar symptoms, the same symptoms.
It’s one hell of a coincidence if it is one!
The BPS proponents are always insisting that we should be listening to those who have recovered and use those techniques.
I think this comes with a large presumption that it’s all from GET/CBT, but in my experience that’s like 1% of the stories I see.
They don’t even follow their own logic!
I think this comes with a large presumption that it’s all from GET/CBT, but in my experience that’s like 1% of the stories I see.
They don’t even follow their own logic!
December 20, 2024 at 1:44 PM
The BPS proponents are always insisting that we should be listening to those who have recovered and use those techniques.
I think this comes with a large presumption that it’s all from GET/CBT, but in my experience that’s like 1% of the stories I see.
They don’t even follow their own logic!
I think this comes with a large presumption that it’s all from GET/CBT, but in my experience that’s like 1% of the stories I see.
They don’t even follow their own logic!
A group set up to represent the best of science, stops using science.
Cochrane just republished their review recommending exercise therapy for ME/CFS without changing a single word in it.
The most recent study in that review is from 2011 some from the 80s. But now they claim GET works using an upto date sounding (Cochrane, 2024) citation. This is beyond ridiculous.
The most recent study in that review is from 2011 some from the 80s. But now they claim GET works using an upto date sounding (Cochrane, 2024) citation. This is beyond ridiculous.
December 20, 2024 at 11:20 AM
A group set up to represent the best of science, stops using science.
When the “Professionals’ are responsible for the current situation including all the harm then maybe we shouldn’t be asking them what we should do.
They have unsurprisingly decided all is good and we need more BioPsychoSocial research!
They have unsurprisingly decided all is good and we need more BioPsychoSocial research!
December 19, 2024 at 4:46 PM
When the “Professionals’ are responsible for the current situation including all the harm then maybe we shouldn’t be asking them what we should do.
They have unsurprisingly decided all is good and we need more BioPsychoSocial research!
They have unsurprisingly decided all is good and we need more BioPsychoSocial research!
I see lots of claims about PEM being just another symptom, like muscle aches or brain fog.
People claim it’s part of many diseases, just a symptom, nothing special….
People claim it’s part of many diseases, just a symptom, nothing special….
You know what happens when people exercise with MS, autoimmune diseases, cancer, and many other forms of health conditions causing fatigue? They tend to improve. You know what happens when people with ME exercise? They get worse. If people with ME have PEM, do the others have PEM too as rule? Nope.
December 19, 2024 at 10:22 AM
I see lots of claims about PEM being just another symptom, like muscle aches or brain fog.
People claim it’s part of many diseases, just a symptom, nothing special….
People claim it’s part of many diseases, just a symptom, nothing special….
At this point I wouldn’t be surprised if they actually just said that.
Cochrane tells ME/CFS patients that they can go fuck themselves: virology.ws/2024/12/17/t...
Trial By Error: Cochrane Tells ME/CFS Patients to Go F--k Themselves | Virology Blog
By David Tuller, DrPH Cochrane has just given the finger to the international ME/CFS community. After jerking everyone around and promising for five years t ...
virology.ws
December 18, 2024 at 9:27 AM
At this point I wouldn’t be surprised if they actually just said that.
Just looked through all my old Reddit posts, I set up an account when I first got ill.
I can’t help but feel sorry for that guy who was descending into this scary place, no help or support, looking for answers.
And I refer to myself as that guy because the person I was doesn’t exist anymore.
I can’t help but feel sorry for that guy who was descending into this scary place, no help or support, looking for answers.
And I refer to myself as that guy because the person I was doesn’t exist anymore.
December 16, 2024 at 11:54 PM
Just looked through all my old Reddit posts, I set up an account when I first got ill.
I can’t help but feel sorry for that guy who was descending into this scary place, no help or support, looking for answers.
And I refer to myself as that guy because the person I was doesn’t exist anymore.
I can’t help but feel sorry for that guy who was descending into this scary place, no help or support, looking for answers.
And I refer to myself as that guy because the person I was doesn’t exist anymore.
Reposted by Stephen MIA
1) Some background on the ongoing Cochrane saga...
In 2019, several patients and researchers had pointed out flaws in the exercise review for CFS and asked these to be corrected or withdrawn.
In 2019, several patients and researchers had pointed out flaws in the exercise review for CFS and asked these to be corrected or withdrawn.
Very disappointing news from Cochrane
www.cochrane.org/news/update-...
Existing review is not fit for purpose: See petition: Cochrane: Withdraw the harmful 2019 Exercise therapy for #CFS review
www.change.org/p/cochrane-w...
links to further info e.g.
www.cochranelibrary.com/cdsr/doi/10....
#MEcfs
www.cochrane.org/news/update-...
Existing review is not fit for purpose: See petition: Cochrane: Withdraw the harmful 2019 Exercise therapy for #CFS review
www.change.org/p/cochrane-w...
links to further info e.g.
www.cochranelibrary.com/cdsr/doi/10....
#MEcfs
December 16, 2024 at 4:06 PM
1) Some background on the ongoing Cochrane saga...
In 2019, several patients and researchers had pointed out flaws in the exercise review for CFS and asked these to be corrected or withdrawn.
In 2019, several patients and researchers had pointed out flaws in the exercise review for CFS and asked these to be corrected or withdrawn.