Martin
@martinmecfs.bsky.social
ME/CFS & chronic illness since 2019
Pinned
Martin
@martinmecfs.bsky.social
· Nov 14
If you are ME/CFS community, please find useful information in below posts 💙❤️🫂
Some great information by Steve, which should help people in the ME/CFS & LC community find people again when they migrate over 💙
Reposted by Martin
👏👏👏 to LCAI’s co-founder @sarahoc1.bsky.social and the other mothers of children with #LongCovid in this excellent article
‘Between 5% and 10% of children and adolescents who get covid develop long covid.’
#TreatLongCovid #speirgorm #LongCovidKids #LongCovidAwareness #LongCovidIreland
‘Between 5% and 10% of children and adolescents who get covid develop long covid.’
#TreatLongCovid #speirgorm #LongCovidKids #LongCovidAwareness #LongCovidIreland
April 29, 2025 at 8:46 PM
👏👏👏 to LCAI’s co-founder @sarahoc1.bsky.social and the other mothers of children with #LongCovid in this excellent article
‘Between 5% and 10% of children and adolescents who get covid develop long covid.’
#TreatLongCovid #speirgorm #LongCovidKids #LongCovidAwareness #LongCovidIreland
‘Between 5% and 10% of children and adolescents who get covid develop long covid.’
#TreatLongCovid #speirgorm #LongCovidKids #LongCovidAwareness #LongCovidIreland
Reposted by Martin
I'd probably only trust someone like Jamie Ducharme to write this one. The psychologization of severe-presenting #MECFS and #LongCOVID. Worth a read. 🧪
Props to Rivka Solomon, and other people with lived experience who spoke.
time.com/7206080/long...
Props to Rivka Solomon, and other people with lived experience who spoke.
time.com/7206080/long...
Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards
The chronic illnesses that make doctors doubt their patients often start after what “should” be a short-lived sickness—like COVID-19.
time.com
January 14, 2025 at 4:56 PM
I'd probably only trust someone like Jamie Ducharme to write this one. The psychologization of severe-presenting #MECFS and #LongCOVID. Worth a read. 🧪
Props to Rivka Solomon, and other people with lived experience who spoke.
time.com/7206080/long...
Props to Rivka Solomon, and other people with lived experience who spoke.
time.com/7206080/long...
Reposted by Martin
ME/CFS Publications have steadily increased for a while.
Despite this, ME is still one of if not the most underfunded common disabling illness on earth.
Source: @crunchme.bsky.social
#MEAwarenessHour
Despite this, ME is still one of if not the most underfunded common disabling illness on earth.
Source: @crunchme.bsky.social
#MEAwarenessHour
December 25, 2024 at 8:26 PM
ME/CFS Publications have steadily increased for a while.
Despite this, ME is still one of if not the most underfunded common disabling illness on earth.
Source: @crunchme.bsky.social
#MEAwarenessHour
Despite this, ME is still one of if not the most underfunded common disabling illness on earth.
Source: @crunchme.bsky.social
#MEAwarenessHour
Reposted by Martin
Irish Independent: 'One in six people in Ireland have experienced long-Covid symptoms, survey finds'
'Around one in six people in Ireland have experienced long-Covid symptoms, according to a new HSE survey.'
www.independent.ie/irish-news/o...
'Around one in six people in Ireland have experienced long-Covid symptoms, according to a new HSE survey.'
www.independent.ie/irish-news/o...
One in six people in Ireland have experienced long-Covid symptoms, survey finds
Around one in six people in Ireland have experienced long-Covid symptoms, according to a new HSE survey.
www.independent.ie
December 13, 2024 at 2:49 PM
Irish Independent: 'One in six people in Ireland have experienced long-Covid symptoms, survey finds'
'Around one in six people in Ireland have experienced long-Covid symptoms, according to a new HSE survey.'
www.independent.ie/irish-news/o...
'Around one in six people in Ireland have experienced long-Covid symptoms, according to a new HSE survey.'
www.independent.ie/irish-news/o...
Reposted by Martin
The blue rose indicates that someone died from #MECFS community.
R.I.P. Judith🕯️
@judyintheskynet.bsky.social
May you feel better where you are now and strength for those left behind. My heart is broken.
#mekills #pwME #millionmissing
R.I.P. Judith🕯️
@judyintheskynet.bsky.social
May you feel better where you are now and strength for those left behind. My heart is broken.
#mekills #pwME #millionmissing
December 11, 2024 at 5:42 PM
The blue rose indicates that someone died from #MECFS community.
R.I.P. Judith🕯️
@judyintheskynet.bsky.social
May you feel better where you are now and strength for those left behind. My heart is broken.
#mekills #pwME #millionmissing
R.I.P. Judith🕯️
@judyintheskynet.bsky.social
May you feel better where you are now and strength for those left behind. My heart is broken.
#mekills #pwME #millionmissing
Reposted by Martin
Even with my Long Covid-induced ME in a pretty good place, I still have to plan ahead for every single interaction. If I do a few hours of work on Monday morning, will I be able to structure my days so I can survive til I have time to crash on Wednesday?
December 9, 2024 at 4:42 PM
Even with my Long Covid-induced ME in a pretty good place, I still have to plan ahead for every single interaction. If I do a few hours of work on Monday morning, will I be able to structure my days so I can survive til I have time to crash on Wednesday?
Reposted by Martin
December 5, 2024 at 11:48 PM
Reposted by Martin
Re-sharing the mini-series from my ME/CFS photo project;
substack.com/@andrewgiffo...
It's a long-form project, aiming to help raise awareness. I've lots more work to make and add, including the kinds of images more classically associated with being incapacitated by ME.
#MECFS #pwME #photography
substack.com/@andrewgiffo...
It's a long-form project, aiming to help raise awareness. I've lots more work to make and add, including the kinds of images more classically associated with being incapacitated by ME.
#MECFS #pwME #photography
Six photographs about being stuck in the rut of ME/CFS
Now mid-way through photo project about Myalgic Encephalomyelitis - aka ME/CFS, ME or Chronic Fatigue Syndrome. I'll share these mini series every once in a while.
substack.com
December 1, 2024 at 2:36 PM
Re-sharing the mini-series from my ME/CFS photo project;
substack.com/@andrewgiffo...
It's a long-form project, aiming to help raise awareness. I've lots more work to make and add, including the kinds of images more classically associated with being incapacitated by ME.
#MECFS #pwME #photography
substack.com/@andrewgiffo...
It's a long-form project, aiming to help raise awareness. I've lots more work to make and add, including the kinds of images more classically associated with being incapacitated by ME.
#MECFS #pwME #photography
Reposted by Martin
T-shirts are now for sale on an on-demand basis. There are three designs, one for ME/cfs, one for Long COVID, and one for anyone riding symptom waves!
All proceeds go to research for LC, ME, and other IACCS.
www.bonfire.com/store/sympto...
All proceeds go to research for LC, ME, and other IACCS.
www.bonfire.com/store/sympto...
November 20, 2024 at 5:39 PM
T-shirts are now for sale on an on-demand basis. There are three designs, one for ME/cfs, one for Long COVID, and one for anyone riding symptom waves!
All proceeds go to research for LC, ME, and other IACCS.
www.bonfire.com/store/sympto...
All proceeds go to research for LC, ME, and other IACCS.
www.bonfire.com/store/sympto...
Reposted by Martin
I’m part of the coolest surf club that nobody wishes to join… but here we are, rockin those waves 🏄🏻♀️. Check out @symptomsurfers.bsky.social 💜
Awesome t-shirt design and the proceeds go to @openmedf.bsky.social @polybiorf.bsky.social ✨
#MECFS #LongCovid #myalgicencephalomyelitis #NEISVoid
Awesome t-shirt design and the proceeds go to @openmedf.bsky.social @polybiorf.bsky.social ✨
#MECFS #LongCovid #myalgicencephalomyelitis #NEISVoid
November 29, 2024 at 12:19 AM
I’m part of the coolest surf club that nobody wishes to join… but here we are, rockin those waves 🏄🏻♀️. Check out @symptomsurfers.bsky.social 💜
Awesome t-shirt design and the proceeds go to @openmedf.bsky.social @polybiorf.bsky.social ✨
#MECFS #LongCovid #myalgicencephalomyelitis #NEISVoid
Awesome t-shirt design and the proceeds go to @openmedf.bsky.social @polybiorf.bsky.social ✨
#MECFS #LongCovid #myalgicencephalomyelitis #NEISVoid
Reposted by Martin
Hello blue sky people! I have 16,000 Twitter followers to whom I am dedicated to helping with MECFS. How will I ever reach that over here? Do I need to post on both places? ❤️
November 23, 2024 at 9:27 PM
Hello blue sky people! I have 16,000 Twitter followers to whom I am dedicated to helping with MECFS. How will I ever reach that over here? Do I need to post on both places? ❤️
Reposted by Martin
Then there’s the general pain of exhaustion. Every person with #MECFS, despite the severity, will feel this. This is not something an abled person will ever have felt, even at their most exhausted. www.bedperspective.com/p/what-its-l... #pwme #longcovid #chronicillness
What it’s like to live with severe ME
I have lived with ME (also known as ME/CFS) for over twelve years now. In 2017 it turned severe. Here’s what it’s like.
www.bedperspective.com
November 22, 2024 at 9:04 AM
Then there’s the general pain of exhaustion. Every person with #MECFS, despite the severity, will feel this. This is not something an abled person will ever have felt, even at their most exhausted. www.bedperspective.com/p/what-its-l... #pwme #longcovid #chronicillness
Reposted by Martin
Hearing how @karenlhargrave.bsky.social @emmagl.bsky.social @oonaghcousins.bsky.social
are using their professional skills & experience to do all they can to change how #ME & LC are understood treated & responded to in all areas is inspiring & moving
Grateful to them
#pwME
youtu.be/mhqMELW_oJw?...
are using their professional skills & experience to do all they can to change how #ME & LC are understood treated & responded to in all areas is inspiring & moving
Grateful to them
#pwME
youtu.be/mhqMELW_oJw?...
Karen Hargrave
YouTube video by David M Tuller
youtu.be
November 22, 2024 at 4:49 PM
Hearing how @karenlhargrave.bsky.social @emmagl.bsky.social @oonaghcousins.bsky.social
are using their professional skills & experience to do all they can to change how #ME & LC are understood treated & responded to in all areas is inspiring & moving
Grateful to them
#pwME
youtu.be/mhqMELW_oJw?...
are using their professional skills & experience to do all they can to change how #ME & LC are understood treated & responded to in all areas is inspiring & moving
Grateful to them
#pwME
youtu.be/mhqMELW_oJw?...
Reposted by Martin
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 12:42 PM
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
Reposted by Martin
New starter pack, "ME/CFS advocates": "Here are some interesting accounts of #MECFS advocates to follow that are perhaps lesser known but nonetheless very valuable"
go.bsky.app/PZW1Sab
Honoured to be included by @mecfsskeptic.bsky.social who I consider one of the most insightful advocates
#PwME
go.bsky.app/PZW1Sab
Honoured to be included by @mecfsskeptic.bsky.social who I consider one of the most insightful advocates
#PwME
November 17, 2024 at 2:46 PM
New starter pack, "ME/CFS advocates": "Here are some interesting accounts of #MECFS advocates to follow that are perhaps lesser known but nonetheless very valuable"
go.bsky.app/PZW1Sab
Honoured to be included by @mecfsskeptic.bsky.social who I consider one of the most insightful advocates
#PwME
go.bsky.app/PZW1Sab
Honoured to be included by @mecfsskeptic.bsky.social who I consider one of the most insightful advocates
#PwME
Reposted by Martin
This is a good question, so I’ll answer to you this way! #MECFS is a multi-system disease, so it affects both the physical and cognitive performance. It ofc varies patient by patient how much those two are affected. For example I can nowadays do more cognitive tasks than physical. 1/8
Heard of this condition but did not recognize the abbreviation. Is it more a physical sense of exhaustion but mentally you are fine doing a lot of intellectual work as long as you are not moving much? Or is the physical exhaustion also too mentally taxing to separate?
November 17, 2024 at 12:37 PM
This is a good question, so I’ll answer to you this way! #MECFS is a multi-system disease, so it affects both the physical and cognitive performance. It ofc varies patient by patient how much those two are affected. For example I can nowadays do more cognitive tasks than physical. 1/8
Reposted by Martin
The thing with clinicians working with patients on “pacing” programs is they may turn into “pacing up” if you’re not disciplined about it. It shouldn’t turn into graded activity by another name. A clear understanding and expectation of the program is required for both the patient and the clinician.
November 16, 2024 at 5:28 PM
The thing with clinicians working with patients on “pacing” programs is they may turn into “pacing up” if you’re not disciplined about it. It shouldn’t turn into graded activity by another name. A clear understanding and expectation of the program is required for both the patient and the clinician.
Reposted by Martin
Happy Saturday, everyone! If you have a moment and would like to watch something truly hopeful for #LongCovid and #MECFS sufferers, please watch David Putrino’s #UniteToFight2024 speech. So much already discovered or on the horizon.
Thank you so much for all your work, @putrinolab.bsky.social !
Thank you so much for all your work, @putrinolab.bsky.social !
#UniteToFight2024
The talk by Dr. David Putrino, Director of Rehabilitation Innovation at Icahn School of Medicine at Mount Sinai, on demystifying diagnosis, pathobiology and treatment of post-acute infection syndromes like #LongCovid #MECFS, now available with 🇬🇧 subtitles: youtu.be/dOg_WCIOqkE?...
The talk by Dr. David Putrino, Director of Rehabilitation Innovation at Icahn School of Medicine at Mount Sinai, on demystifying diagnosis, pathobiology and treatment of post-acute infection syndromes like #LongCovid #MECFS, now available with 🇬🇧 subtitles: youtu.be/dOg_WCIOqkE?...
Dr. David Putrino: PAIS-demystifying diagnosis, pathobiology and treatment (Day 2, Block 9)
YouTube video by UniteToFight
youtu.be
November 16, 2024 at 2:49 PM
Happy Saturday, everyone! If you have a moment and would like to watch something truly hopeful for #LongCovid and #MECFS sufferers, please watch David Putrino’s #UniteToFight2024 speech. So much already discovered or on the horizon.
Thank you so much for all your work, @putrinolab.bsky.social !
Thank you so much for all your work, @putrinolab.bsky.social !
Reposted by Martin
In light of all the new faces tonight - reminder that I’ve started a “newbie spoonie” pack for anyone dealing with chronic illness or disabilities and looking to connect with mutuals on Bluesky.
Allies welcome too! It’s a place to build friendship & supportive community:
go.bsky.app/GVzeB2f
Allies welcome too! It’s a place to build friendship & supportive community:
go.bsky.app/GVzeB2f
November 15, 2024 at 10:05 AM
In light of all the new faces tonight - reminder that I’ve started a “newbie spoonie” pack for anyone dealing with chronic illness or disabilities and looking to connect with mutuals on Bluesky.
Allies welcome too! It’s a place to build friendship & supportive community:
go.bsky.app/GVzeB2f
Allies welcome too! It’s a place to build friendship & supportive community:
go.bsky.app/GVzeB2f
Reposted by Martin
If you're writing about declining health, drop in cognition, rapid rise in disability, etc, and you don't even consider the hypothesis that it could be due to a virus that is known to do those things and continues to infect nearly everyone repeatedly, your article will be absurd.
October 28, 2024 at 3:40 PM
If you're writing about declining health, drop in cognition, rapid rise in disability, etc, and you don't even consider the hypothesis that it could be due to a virus that is known to do those things and continues to infect nearly everyone repeatedly, your article will be absurd.
Some great information by Steve, which should help people in the ME/CFS & LC community find people again when they migrate over 💙
If you are ME/CFS community, please find useful information in below posts 💙❤️🫂
November 14, 2024 at 7:18 PM
Some great information by Steve, which should help people in the ME/CFS & LC community find people again when they migrate over 💙
Reposted by Martin
Many long COVID patients adjust to slim recovery odds as world moves on - www.reuters.com/business/hea...
Not that I want to adjust to how #LongCovid has disabled me, but it's been 4 years and 100s of medical appointments and I am so very limited now.
Not that I want to adjust to how #LongCovid has disabled me, but it's been 4 years and 100s of medical appointments and I am so very limited now.
Many long COVID patients adjust to slim recovery odds as world moves on
There are certain phrases that Wachuka Gichohi finds difficult to hear after enduring four years of living with long COVID, marked by debilitating fatigue, pain, panic attacks and other symptoms so severe she feared she would die overnight.
www.reuters.com
November 14, 2024 at 10:16 AM
Many long COVID patients adjust to slim recovery odds as world moves on - www.reuters.com/business/hea...
Not that I want to adjust to how #LongCovid has disabled me, but it's been 4 years and 100s of medical appointments and I am so very limited now.
Not that I want to adjust to how #LongCovid has disabled me, but it's been 4 years and 100s of medical appointments and I am so very limited now.
Reposted by Martin
If you are ME/CFS community, please find useful information in below posts 💙❤️🫂
October 17, 2024 at 8:52 PM
If you are ME/CFS community, please find useful information in below posts 💙❤️🫂
Reposted by Martin
I am only at 81 followers 🥲 Can you guys re-post this so I can reconnect with more people here. It's me, Ramy 👋
November 13, 2024 at 4:41 PM
I am only at 81 followers 🥲 Can you guys re-post this so I can reconnect with more people here. It's me, Ramy 👋
Reposted by Martin
“If it were really THAT bad you would be getting help.”
No. There’s NO help available for the lions share of chronic illness & disabilities
Don’t punish us because you need you need to remain in denial about the frail nature of our bodies. About our crumbling healthcare systems. About disability.
No. There’s NO help available for the lions share of chronic illness & disabilities
Don’t punish us because you need you need to remain in denial about the frail nature of our bodies. About our crumbling healthcare systems. About disability.
November 14, 2024 at 4:53 AM
“If it were really THAT bad you would be getting help.”
No. There’s NO help available for the lions share of chronic illness & disabilities
Don’t punish us because you need you need to remain in denial about the frail nature of our bodies. About our crumbling healthcare systems. About disability.
No. There’s NO help available for the lions share of chronic illness & disabilities
Don’t punish us because you need you need to remain in denial about the frail nature of our bodies. About our crumbling healthcare systems. About disability.