Edna, ME Advocate & Carer 💙
@ednamacnamara.bsky.social
💙 M.E.Carer of son aged 32, ME for 13yrs 💙.
RaisingAwareness for
#PwME.
#Carers
#LCovid
#greatestMEdicalscandal
X Edna, M.E.Advocate 🇨🇮
https://www.irishexaminer.com/news/arid-40218716.html
http://www.idonate.ie/aMothersWalkforMECFSresearch
RaisingAwareness for
#PwME.
#Carers
#LCovid
#greatestMEdicalscandal
X Edna, M.E.Advocate 🇨🇮
https://www.irishexaminer.com/news/arid-40218716.html
http://www.idonate.ie/aMothersWalkforMECFSresearch
Saw my Sons Neurologist this week,me in person, my son, byPhone as housebound
After dealing with the usual symptom Management.
I said,"we are 12yrs into this nightmare can you do anything for him?"
He replied, "No!"
Doctors take an oath to do no wrong.
IMO doing Nothing is doing wrong.
After dealing with the usual symptom Management.
I said,"we are 12yrs into this nightmare can you do anything for him?"
He replied, "No!"
Doctors take an oath to do no wrong.
IMO doing Nothing is doing wrong.
March 15, 2025 at 9:31 AM
Saw my Sons Neurologist this week,me in person, my son, byPhone as housebound
After dealing with the usual symptom Management.
I said,"we are 12yrs into this nightmare can you do anything for him?"
He replied, "No!"
Doctors take an oath to do no wrong.
IMO doing Nothing is doing wrong.
After dealing with the usual symptom Management.
I said,"we are 12yrs into this nightmare can you do anything for him?"
He replied, "No!"
Doctors take an oath to do no wrong.
IMO doing Nothing is doing wrong.
This should never have happened.
I'm so sorry for your massive loss. No words.
ME - Greatest medical scandal in history
I'm so sorry for your massive loss. No words.
ME - Greatest medical scandal in history
January 8, 2025 at 2:55 PM
This should never have happened.
I'm so sorry for your massive loss. No words.
ME - Greatest medical scandal in history
I'm so sorry for your massive loss. No words.
ME - Greatest medical scandal in history
Reposted by Edna, ME Advocate & Carer 💙
So excited to share these messages of hope & solidarity for 2025! Huge thanks to all who contributed.
#TheRedTreeandME #myalgicencephalomyelitis #LongCovid #pwME open.substack.com/pub/theredtr...
#TheRedTreeandME #myalgicencephalomyelitis #LongCovid #pwME open.substack.com/pub/theredtr...
'We shall have spring again' - Messages of hope and solidarity for 2025
“Wrong will be right, when Aslan comes in sight, At the sound of his roar, sorrows will be no more, When he bares his teeth, winter meets its death, And when he shakes his mane, we shall have spring a...
open.substack.com
December 31, 2024 at 2:11 AM
So excited to share these messages of hope & solidarity for 2025! Huge thanks to all who contributed.
#TheRedTreeandME #myalgicencephalomyelitis #LongCovid #pwME open.substack.com/pub/theredtr...
#TheRedTreeandME #myalgicencephalomyelitis #LongCovid #pwME open.substack.com/pub/theredtr...
Reposted by Edna, ME Advocate & Carer 💙
Dec 20: It's TV doctor Dr Ranj Singh! Dr Ranj is also an author and columnist, and has appeared on #Strictly.
His message: “You are so much more than your condition. And you deserve to be heard. Merry Xmas, Dr Ranj x”
#PatientSafety #pwME #pwLC #ThereForME
His message: “You are so much more than your condition. And you deserve to be heard. Merry Xmas, Dr Ranj x”
#PatientSafety #pwME #pwLC #ThereForME
December 20, 2024 at 9:00 AM
Dec 20: It's TV doctor Dr Ranj Singh! Dr Ranj is also an author and columnist, and has appeared on #Strictly.
His message: “You are so much more than your condition. And you deserve to be heard. Merry Xmas, Dr Ranj x”
#PatientSafety #pwME #pwLC #ThereForME
His message: “You are so much more than your condition. And you deserve to be heard. Merry Xmas, Dr Ranj x”
#PatientSafety #pwME #pwLC #ThereForME
Reposted by Edna, ME Advocate & Carer 💙
As a person with ME I’m sick of the notion that I should just accept progress is slow.
We need radical and dynamic leadership from our charities and supporters. We need allies to fight for us relentlessly and work collaboratively to change the reality we live every day.
We need radical and dynamic leadership from our charities and supporters. We need allies to fight for us relentlessly and work collaboratively to change the reality we live every day.
November 27, 2024 at 7:55 PM
As a person with ME I’m sick of the notion that I should just accept progress is slow.
We need radical and dynamic leadership from our charities and supporters. We need allies to fight for us relentlessly and work collaboratively to change the reality we live every day.
We need radical and dynamic leadership from our charities and supporters. We need allies to fight for us relentlessly and work collaboratively to change the reality we live every day.
Reposted by Edna, ME Advocate & Carer 💙
It’s #ThereForME!
Our message: “Thank you for all the support this year – it means the world to us! We’re thinking of you this Christmas. We’ll keep fighting for you in 2025. Lots of love. Karen, Emma, Oonagh”
#PatientSafety #pwME #pwLC #ThereForME
Our message: “Thank you for all the support this year – it means the world to us! We’re thinking of you this Christmas. We’ll keep fighting for you in 2025. Lots of love. Karen, Emma, Oonagh”
#PatientSafety #pwME #pwLC #ThereForME
December 17, 2024 at 9:00 AM
It’s #ThereForME!
Our message: “Thank you for all the support this year – it means the world to us! We’re thinking of you this Christmas. We’ll keep fighting for you in 2025. Lots of love. Karen, Emma, Oonagh”
#PatientSafety #pwME #pwLC #ThereForME
Our message: “Thank you for all the support this year – it means the world to us! We’re thinking of you this Christmas. We’ll keep fighting for you in 2025. Lots of love. Karen, Emma, Oonagh”
#PatientSafety #pwME #pwLC #ThereForME
Reposted by Edna, ME Advocate & Carer 💙
Dec 11: Prof Chris Ponting is #ThereForME! @cgatist.bsky.social leads @decodemestudy.bsky.social, the world’s largest ME genetic study.
“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
December 11, 2024 at 9:00 AM
Dec 11: Prof Chris Ponting is #ThereForME! @cgatist.bsky.social leads @decodemestudy.bsky.social, the world’s largest ME genetic study.
“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
“My Christmas wish for people with ME and Long Covid is: Many scientific breakthroughs – a ‘True Dawn’ bringing us much closer to effective therapies. Chris xx”
Reposted by Edna, ME Advocate & Carer 💙
#UniteToFight2024
All 50 talks of the so-far biggest conference on #MECFS and #LongCovid are now available with 🇬🇧 subtitles.
Transcribed by amazing volunteers, many of them patients themselves 🙏💙
Please share and help make the incredible insights of this conference more broadly accessible.
All 50 talks of the so-far biggest conference on #MECFS and #LongCovid are now available with 🇬🇧 subtitles.
Transcribed by amazing volunteers, many of them patients themselves 🙏💙
Please share and help make the incredible insights of this conference more broadly accessible.
#UniteToFight2024 🇬🇧 subtitles
In this 🧵 I will continue to add all talks that have been transcribed & 🇬🇧 subtitled by volunteers.
I am humbled and deeply impressed by how much effort so many volunteers have been putting into this, despite many being ill themselves. Thank you all so much! 🙏💙
In this 🧵 I will continue to add all talks that have been transcribed & 🇬🇧 subtitled by volunteers.
I am humbled and deeply impressed by how much effort so many volunteers have been putting into this, despite many being ill themselves. Thank you all so much! 🙏💙
December 8, 2024 at 4:12 AM
#UniteToFight2024
All 50 talks of the so-far biggest conference on #MECFS and #LongCovid are now available with 🇬🇧 subtitles.
Transcribed by amazing volunteers, many of them patients themselves 🙏💙
Please share and help make the incredible insights of this conference more broadly accessible.
All 50 talks of the so-far biggest conference on #MECFS and #LongCovid are now available with 🇬🇧 subtitles.
Transcribed by amazing volunteers, many of them patients themselves 🙏💙
Please share and help make the incredible insights of this conference more broadly accessible.
Reposted by Edna, ME Advocate & Carer 💙
Living with chronic illness is like having a full-time job where the hours are terrible, the boss is mean, there are zero vacation days and you aren’t allowed to quit-ever. 😒
#ChronicIllnessLife
#ChronicIllnessLife
December 2, 2024 at 11:25 PM
Living with chronic illness is like having a full-time job where the hours are terrible, the boss is mean, there are zero vacation days and you aren’t allowed to quit-ever. 😒
#ChronicIllnessLife
#ChronicIllnessLife
Reposted by Edna, ME Advocate & Carer 💙
1,206 signatures and growing. Have you signed? Have you read the eloquent, touching, insightful comments from #pwME #MyalgicEncephalomyelitis all over the world?
In PEM from advocacy last few weeks but just coming on to share this follow up letter and petition to ME Association calling for accountability and action.
www.change.org/p/me-associa...
www.change.org/p/me-associa...
Sign the Petition
ME Association Chair Neil Riley must step down
www.change.org
December 7, 2024 at 8:05 PM
1,206 signatures and growing. Have you signed? Have you read the eloquent, touching, insightful comments from #pwME #MyalgicEncephalomyelitis all over the world?
Reposted by Edna, ME Advocate & Carer 💙
Here is a link to a video about Ron Davis and Rob Phair’s work on the itaconate shunt with the scientists at the University of Utah. We spoke to the Bay Area MECFS support group and it was recorded over Zoom. drive.google.com/file/d/1rKf1...
Dr Davis and Janet Ph.D.mp4
drive.google.com
December 6, 2024 at 9:21 AM
Here is a link to a video about Ron Davis and Rob Phair’s work on the itaconate shunt with the scientists at the University of Utah. We spoke to the Bay Area MECFS support group and it was recorded over Zoom. drive.google.com/file/d/1rKf1...
Reposted by Edna, ME Advocate & Carer 💙
🚣♂️🥇💪
Definitely give #ThereForME a follow if you're looking for an org spreading #MECFS & #LongCovid advocacy outside the usual bubble!
Definitely give #ThereForME a follow if you're looking for an org spreading #MECFS & #LongCovid advocacy outside the usual bubble!
Rowing Olympic Champions Emily Craig and Imogen Grant are #ThereForME!
Their message: “Our Christmas wish for everyone with ME and Long Covid is that you are surrounded by people who love and care for you and who will keep pushing to make sure you have a better future. Emily and Imogen xxx”
Their message: “Our Christmas wish for everyone with ME and Long Covid is that you are surrounded by people who love and care for you and who will keep pushing to make sure you have a better future. Emily and Imogen xxx”
December 5, 2024 at 9:45 AM
🚣♂️🥇💪
Definitely give #ThereForME a follow if you're looking for an org spreading #MECFS & #LongCovid advocacy outside the usual bubble!
Definitely give #ThereForME a follow if you're looking for an org spreading #MECFS & #LongCovid advocacy outside the usual bubble!
Reposted by Edna, ME Advocate & Carer 💙
David Putrino is #ThereForME! @putrinolab.bsky.social is a leading #LongCovid clinician and Director of the @mountsinainyc.bsky.social Center for Recovery From Complex Chronic Illnesses.
His message: “Happy Holidays! We won’t stop fighting for pwME! Love David”
#PatientSafety #pwME #pwLC
His message: “Happy Holidays! We won’t stop fighting for pwME! Love David”
#PatientSafety #pwME #pwLC
December 7, 2024 at 9:00 AM
David Putrino is #ThereForME! @putrinolab.bsky.social is a leading #LongCovid clinician and Director of the @mountsinainyc.bsky.social Center for Recovery From Complex Chronic Illnesses.
His message: “Happy Holidays! We won’t stop fighting for pwME! Love David”
#PatientSafety #pwME #pwLC
His message: “Happy Holidays! We won’t stop fighting for pwME! Love David”
#PatientSafety #pwME #pwLC
Reposted by Edna, ME Advocate & Carer 💙
@lbc.co.uk presenter @natashadevon.bsky.social is #ThereForME!
Her message: “For people affected by ME and Long Covid, please know that you are in my thoughts this Christmas and I will continue to advocate for you whenever I can. Sending you so much love, Natasha Devon”
#pwME #pwLC
Her message: “For people affected by ME and Long Covid, please know that you are in my thoughts this Christmas and I will continue to advocate for you whenever I can. Sending you so much love, Natasha Devon”
#pwME #pwLC
December 3, 2024 at 9:00 AM
@lbc.co.uk presenter @natashadevon.bsky.social is #ThereForME!
Her message: “For people affected by ME and Long Covid, please know that you are in my thoughts this Christmas and I will continue to advocate for you whenever I can. Sending you so much love, Natasha Devon”
#pwME #pwLC
Her message: “For people affected by ME and Long Covid, please know that you are in my thoughts this Christmas and I will continue to advocate for you whenever I can. Sending you so much love, Natasha Devon”
#pwME #pwLC
Reposted by Edna, ME Advocate & Carer 💙
Here's the clue for tomorrow's #ThereForMEAdventCalendar. Can you guess who it is? Find out tomorrow at noon.
December 1, 2024 at 5:01 PM
Here's the clue for tomorrow's #ThereForMEAdventCalendar. Can you guess who it is? Find out tomorrow at noon.
Reposted by Edna, ME Advocate & Carer 💙
Today, Wikipedia's featured article is about ME/CFS!
Each day, a summary of one of Wikipedia's features articles appears at the top of the main page as "Today's Featured Article".
We invite you to share it & point people to @meactnet.bsky.social for more info!
en.m.wikipedia.org/wiki/Main_Page
Each day, a summary of one of Wikipedia's features articles appears at the top of the main page as "Today's Featured Article".
We invite you to share it & point people to @meactnet.bsky.social for more info!
en.m.wikipedia.org/wiki/Main_Page
Wikipedia, the free encyclopedia
en.m.wikipedia.org
November 25, 2024 at 4:29 PM
Today, Wikipedia's featured article is about ME/CFS!
Each day, a summary of one of Wikipedia's features articles appears at the top of the main page as "Today's Featured Article".
We invite you to share it & point people to @meactnet.bsky.social for more info!
en.m.wikipedia.org/wiki/Main_Page
Each day, a summary of one of Wikipedia's features articles appears at the top of the main page as "Today's Featured Article".
We invite you to share it & point people to @meactnet.bsky.social for more info!
en.m.wikipedia.org/wiki/Main_Page
Dr Weir was the first to diagnose our son, now 10yrs into this nightmare of ME, aged 31 now. Dr Weir is the only constant Medical professional who has stood by us, and thousands of others. A very warm and Happy Christmas to you William and your family. You deserve so much 💙
Dec 1: It's Dr William Weir, who has worked with and supported patients with ME for decades.
His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”
His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”
December 1, 2024 at 10:01 AM
Dr Weir was the first to diagnose our son, now 10yrs into this nightmare of ME, aged 31 now. Dr Weir is the only constant Medical professional who has stood by us, and thousands of others. A very warm and Happy Christmas to you William and your family. You deserve so much 💙
Reposted by Edna, ME Advocate & Carer 💙
As promised, here's a clue for tomorrow's #ThereForMEAdventCalendar. Can you guess who it is?
November 30, 2024 at 5:00 PM
As promised, here's a clue for tomorrow's #ThereForMEAdventCalendar. Can you guess who it is?
Reposted by Edna, ME Advocate & Carer 💙
The Xmas season can be really hard for those dealing with ME or Long Covid so we hope this advent calendar can bring a little joy.
Tomorrow we’ll see who is behind the first door in our #ThereForME advent calendar. We'll give you a little clue later!
Who would you like to see there?
Tomorrow we’ll see who is behind the first door in our #ThereForME advent calendar. We'll give you a little clue later!
Who would you like to see there?
November 30, 2024 at 9:00 AM
The Xmas season can be really hard for those dealing with ME or Long Covid so we hope this advent calendar can bring a little joy.
Tomorrow we’ll see who is behind the first door in our #ThereForME advent calendar. We'll give you a little clue later!
Who would you like to see there?
Tomorrow we’ll see who is behind the first door in our #ThereForME advent calendar. We'll give you a little clue later!
Who would you like to see there?
"We are not asking for miracles, just decency" #LivingwithME
I wish there was a treatment to stop crashes. That alone would make our lives so much better. Like I always say, even a .1% increase in my health would result in a HUGE increase in my QOL. I wouldn’t need a cure to get a life back. We are not asking for miracles just decency.
November 29, 2024 at 1:41 PM
"We are not asking for miracles, just decency" #LivingwithME
Reposted by Edna, ME Advocate & Carer 💙
No one ever sees the world of color that lives inside of me because the black void doesn’t let it out…The only thing anyone ever sees are the bits of dust of a broken down machine…
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
Life Under a Blanket of Death
No one ever sees the world of color that lives inside of me because the black void doesn’t let it out. I feel it, smell it, taste it. I exist there in every moment of my life. But the only thing an...
www.whitneydafoe.com
September 19, 2024 at 3:31 PM
No one ever sees the world of color that lives inside of me because the black void doesn’t let it out…The only thing anyone ever sees are the bits of dust of a broken down machine…
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
Reposted by Edna, ME Advocate & Carer 💙
Make sure you’re following #ThereForME on our new social media accounts!
You can find links here: linktr.ee/ThereForME
#ComingSoon
You can find links here: linktr.ee/ThereForME
#ComingSoon
November 26, 2024 at 9:00 AM
Make sure you’re following #ThereForME on our new social media accounts!
You can find links here: linktr.ee/ThereForME
#ComingSoon
You can find links here: linktr.ee/ThereForME
#ComingSoon
Reposted by Edna, ME Advocate & Carer 💙
Anyone interested in #MECFS, please follow Janet Dafoe @janetdafoe.bsky.social 💙
She’s the mother of @whitneydafoe.bsky.social who suffers from extremely severe #MECFS and also the wife of the brilliant Dr. Ron Davis, a Stanford researcher tirelessly working on finding a cure for #MECFS.
⬇️
She’s the mother of @whitneydafoe.bsky.social who suffers from extremely severe #MECFS and also the wife of the brilliant Dr. Ron Davis, a Stanford researcher tirelessly working on finding a cure for #MECFS.
⬇️
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 24, 2024 at 1:59 AM
Anyone interested in #MECFS, please follow Janet Dafoe @janetdafoe.bsky.social 💙
She’s the mother of @whitneydafoe.bsky.social who suffers from extremely severe #MECFS and also the wife of the brilliant Dr. Ron Davis, a Stanford researcher tirelessly working on finding a cure for #MECFS.
⬇️
She’s the mother of @whitneydafoe.bsky.social who suffers from extremely severe #MECFS and also the wife of the brilliant Dr. Ron Davis, a Stanford researcher tirelessly working on finding a cure for #MECFS.
⬇️
Reposted by Edna, ME Advocate & Carer 💙
There are a million things I will never do again. They just keep adding up as the years go by. And as the people around me age, the opportunities for life experiences I have lost add up too…Someday I will be a part of it… #MECFS #LongCovid
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
Thanksgiving 2024
There are a million things I will never do again. They just keep adding up as the years go by. And as the people around me age, the opportunities for life experiences I have lost add up too…Someday ...
www.whitneydafoe.com
November 28, 2024 at 4:06 PM
There are a million things I will never do again. They just keep adding up as the years go by. And as the people around me age, the opportunities for life experiences I have lost add up too…Someday I will be a part of it… #MECFS #LongCovid
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...