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ednamacnamara.bsky.social
💙 M.E.Carer of son aged 31, ME for 12yrs 💙. RaisingAwareness for #PwME. #Carers #LCovid #greatestMEdicalscandal X Edna, M.E.Advocate 🇨🇮 https://www.irishexaminer.com/news/arid-40218716.html http://www.idonate.ie/aMothersWalkforMECFSresearch
12 posts 195 followers 361 following
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Posts 24 Comments 8

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.

submitted 59 days ago • 2 comments

This should never have happened. I'm so sorry for your massive loss. No words. ME - Greatest medical scandal in history

submitted 125 days ago • 0 comments

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...

submitted 134 days ago • 1 comment

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

submitted 144 days ago • 2 comments

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.

submitted 167 days ago • 0 comments

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

submitted 147 days ago • 8 comments

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”

submitted 153 days ago • 6 comments

#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.

submitted 157 days ago • 5 comments

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

submitted 162 days ago • 3 comments

1,206 signatures and growing. Have you signed? Have you read the eloquent, touching, insightful comments from #pwME #MyalgicEncephalomyelitis all over the world?

submitted 157 days ago • 0 comments

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...

submitted 158 days ago • 7 comments

🚣‍♂️🥇💪 Definitely give #ThereForME a follow if you're looking for an org spreading #MECFS & #LongCovid advocacy outside the usual bubble!

submitted 159 days ago • 0 comments

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

submitted 157 days ago • 10 comments

@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

submitted 161 days ago • 6 comments

Here's the clue for tomorrow's #ThereForMEAdventCalendar. Can you guess who it is? Find out tomorrow at noon.

submitted 163 days ago • 2 comments

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

submitted 169 days ago • 2 comments

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 💙

submitted 163 days ago • 0 comments

As promised, here's a clue for tomorrow's #ThereForMEAdventCalendar. Can you guess who it is?

submitted 164 days ago • 3 comments

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?

submitted 164 days ago • 3 comments

"We are not asking for miracles, just decency" #LivingwithME

submitted 165 days ago • 0 comments

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

submitted 236 days ago • 0 comments

Make sure you’re following #ThereForME on our new social media accounts! You can find links here: linktr.ee/ThereForME #ComingSoon

submitted 168 days ago • 4 comments

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. ⬇️

submitted 171 days ago • 1 comment

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=...

submitted 166 days ago • 5 comments