#mye — Public Fediverse posts

7/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day #7

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #MyE #CFIDS

@mecfs

Open Medicine Foundation: A new chapter in ME/CFS treatment research begins today—and your voice is essential to making it count

https://www.omf.ngo/introducing-ctn-lite/

https://docs.google.com/forms/d/e/1FAIpQLSeTmvjcIAM9xWEIvJXuBx_L99wmBHqwYuJ2xOwjQOtGkZl8Zw/viewform

Screenshot from latest Science for ME weekly update

#MEcfs #PwME #ME #MyalgicE
@mecfs
#CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

(US)
Tell Congress: Fund ME/CFS Research Now

Deadline is April 15 I believe

https://solvecfs.quorum.us/campaign/157943/

Image is from the AMMES April 2026 newsletter

#MEcfs #PwME #ME #MyalgicE
@mecfs
#CFSME #MEeps #CFIDS #SEID #NeuroME #CFS #MyE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

2/2

Longer message regarding the €3000 core funding grant that we were delighted to receive this week from the Hospital Saturday Fund

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE
@tomkindlon @mecfs

Un clásico del rock chileno reeditado en CD gracias al sello M&E

Los Jockers: "Nueva Sociedad"

#LosJockers #NowPlaying #CD #RockChileno #MusicaChilena #Rock #Musica #MyE

So much is happening to my world right now that I neither have the energy nor the time to do anything but keep all those things from beating me and my family to the ground. And most of the things are not even negative things..
#much #many #alot #multiple #mucho #mycket #många #mye #veel #beaucoup #viel #molto

So much is happening to my world right now that I neither have the energy nor the time to do anything but keep all those things from beating me and my family to the ground. And most of the things are not even negative things..
#much #many #alot #multiple #mucho #mycket #många #mye #veel #beaucoup #viel #molto

So much is happening to my world right now that I neither have the energy nor the time to do anything but keep all those things from beating me and my family to the ground. And most of the things are not even negative things..
#much #many #alot #multiple #mucho #mycket #många #mye #veel #beaucoup #viel #molto

So much is happening to my world right now that I neither have the energy nor the time to do anything but keep all those things from beating me and my family to the ground. And most of the things are not even negative things..
#much #many #alot #multiple #mucho #mycket #många #mye #veel #beaucoup #viel #molto

So much is happening to my world right now that I neither have the energy nor the time to do anything but keep all those things from beating me and my family to the ground. And most of the things are not even negative things..
#much #many #alot #multiple #mucho #mycket #många #mye #veel #beaucoup #viel #molto

23/

Educate others about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome during ME/CFS Awareness month (May) by sharing and/or liking this 9-minute video

https://youtu.be/r0w9-eQ_fKQ

Day 23

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE

@mecfs

17/

May is #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (#MECFS) Awareness Month.

Please help by sharing +/or liking this 6-minute Paper Stop-motion Animation About ME/CFS https://www.youtube.com/watch?v=dUrPFqGONM8

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #MyalgicE #PwME #MyE #MEeps
@mecfs

7/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day #7

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #MyE #CFIDS

@mecfs

2/

A pilot cross-sectional investigation of symptom clusters & associations with patient-reported outcomes in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome & #PostCOVID19 Condition

"None of the four symptom clusters identified were unique to ME/CFS or #PCC"

https://link.springer.com/article/10.1007/s11136-024-03794-x

@mecfs @longcovid #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

A useful resource for people who like to listen to articles: @actionforme's InterAction magazine articles can be listened to online by anyone for free here

https://soundcloud.com/actionformeaudio

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

2/

Elizabeth has posted this video already on her #Notjustfatigue social media accounts & has kindly given me permission to share it on some other social media platforms I'm on. Please do check out the website for her non-profit #Notjustfatigue https://www.notjustfatigue.org

Hashtags:
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

4/

"We need to be vigilant and educated to spot this charlatanry. We need therapeutic treatments that actually work and stop gaslighting those with post-acute viral disease."

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC #COVIDBrain

@LongCovidAdvoc @longcovid @mecfs

23/

Educate others about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome during ME/CFS Awareness month (May) by sharing and/or liking this 9-minute video

https://youtu.be/r0w9-eQ_fKQ

Day #23

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE
@mecfs

17/

May is #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (#MECFS) Awareness Month.

Please help by sharing +/or liking this 6-minute Paper Stop-motion Animation About ME/CFS https://www.youtube.com/watch?v=dUrPFqGONM8

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MyE #MEeps
@mecfs

8/
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by sharing and/or liking this image.

Day #8

#MyalgicE #MyalgicEncephalomyelitis #MyE #NeuroME #PwME @mecfs

7/

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help
by sharing and/or liking this image.

Day #7

#MEcfs #CFS #MyalgicE
#MyalgicEncephalomyelitis #MyE #CFIDS @mecfs

🧵

May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by reposting and/or liking this image.

Day 1

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

One week to go to Dublin event.

I wouldn’t have the energy for the whole event so plan to come in just before the chat over free tea/coffee/water & biscuits. Do say hello if you see me. 👋

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

We would encourage Irish people to contact local and/or national media outlets in the coming weeks.

You could mention the Dr Speight talks if you thought it was appropriate https://tinyurl.com/DrSpeightTalks .

But you don't need to. It's a good time of year to get sympathetic coverage.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing @mecfs @cfs

1/

“In England, Conflicts Between Families and Hospitals Threaten the Lives of Young Women with ME” by David Tuller DrPH

https://t.ly/77JIT

About the desperate situation of #severeME patients not getting help from hospitals with necessary feeding tube fitting.

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing

1/

Dr Speight's 5 free Irish ME/CFS talks in #Cork/ #Dublin/ #Galway/ #Limerick/ #Sligo, May 2024:
https://irishmecfs.org/blog/dr-speights-5-free-irish-mecfs-talks-in-corkdublingalwaylimericksligo-may-2024-plus-he-is-seeing-patients-aged-20-or-younger-for-free-while-he-is-in-ireland

Plus he is seeing patients aged 20 or younger for free while he is in Ireland.

Please share widely, tag others, etc.

#MEcfs #CFS #PwME
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing #EndMECFS #MECFSNews #MEpvs #MEpostviralsyndrome

Dr Speight's 5 free Irish ME/CFS talks in #Cork/ #Dublin/ #Galway/ #Limerick/ #Sligo, May 2024:
https://irishmecfs.org/blog/dr-speights-5-free-irish-mecfs-talks-in-corkdublingalwaylimericksligo-may-2024-plus-he-is-seeing-patients-aged-20-or-younger-for-free-while-he-is-in-ireland

Plus he is seeing patients aged 20 or younger for free while he is in Ireland.

Please share widely, tag others, etc.

#MEcfs #CFS #PwME
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing #EndMECFS #MECFSNews #MEpvs #MEpostviralsyndrome

Dr Speight's 5 free Irish ME/CFS talks in #Cork/ #Dublin/ #Galway/ #Limerick/ #Sligo, May 2024:
https://irishmecfs.org/blog/dr-speights-5-free-irish-mecfs-talks-in-corkdublingalwaylimericksligo-may-2024-plus-he-is-seeing-patients-aged-20-or-younger-for-free-while-he-is-in-ireland

Plus he is seeing patients aged 20 or younger for free while he is in Ireland.

Please share widely, tag others, etc.

#MEcfs #CFS #PwME
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing #EndMECFS #MECFSNews #MEpvs #MEpostviralsyndrome

Dr Speight's 5 free Irish ME/CFS talks in #Cork/ #Dublin/ #Galway/ #Limerick/ #Sligo, May 2024:
https://irishmecfs.org/blog/dr-speights-5-free-irish-mecfs-talks-in-corkdublingalwaylimericksligo-may-2024-plus-he-is-seeing-patients-aged-20-or-younger-for-free-while-he-is-in-ireland

Plus he is seeing patients aged 20 or younger for free while he is in Ireland.

Please share widely, tag others, etc.

#MEcfs #CFS #PwME
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing #EndMECFS #MECFSNews #MEpvs #MEpostviralsyndrome

Dr Speight's 5 free Irish ME/CFS talks in #Cork/ #Dublin/ #Galway/ #Limerick/ #Sligo, May 2024:
https://irishmecfs.org/blog/dr-speights-5-free-irish-mecfs-talks-in-corkdublingalwaylimericksligo-may-2024-plus-he-is-seeing-patients-aged-20-or-younger-for-free-while-he-is-in-ireland

Plus he is seeing patients aged 20 or younger for free while he is in Ireland.

Please share widely, tag others, etc.

#MEcfs #CFS #PwME
@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE #millionsmissing #EndMECFS #MECFSNews #MEpvs #MEpostviralsyndrome

Byline Times: 'A Rollercoaster Of Awful Emotions': Family Speaks Out for NHS Overhaul to Prevent Deaths of Severely Ill ME Patients

https://t.ly/6R73W

The heartbreaking & currently ongoing critical case of #severeME sufferer Millie McAnish

#SevereMEcfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME @severeme #severecfs

1/

2/2

Longer message regarding the €3000 core funding grant that we were delighted to receive this week from the Hospital Saturday Fund

#MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #PwME #MyE

@tomkindlon @mecfs

Informal ME/CFS social meet-up hosted by Tom Kindlon @[email protected]
on Tuesday, February 6 in Dublin 15.

Hopefully we’ll see some of you there.
https://www.facebook.com/events/703057832013006

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS

From a #DecodeME team member today:

“If you haven't sent it yet, there are 9 days left to get your spit kit in the post. We still have over 3,900 kits yet to be returned to us, so we are hoping for a last minute surge”

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS

UK #DecodeME
"Our focus now is on getting as many spit kits back as possible. If you are yet to return your kit, please do so by the 31 January 2024 at the latest. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back."

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS

UK #DecodeME
"Our focus now is on getting as many spit kits back as possible. If you are yet to return your kit, please do so by the 31 January 2024 at the latest. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back."

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS

UK #DecodeME
"Our focus now is on getting as many spit kits back as possible. If you are yet to return your kit, please do so by the 31 January 2024 at the latest. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back."

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS

UK #DecodeME
"Our focus now is on getting as many spit kits back as possible. If you are yet to return your kit, please do so by the 31 January 2024 at the latest. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back."

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS

UK #DecodeME
"Our focus now is on getting as many spit kits back as possible. If you are yet to return your kit, please do so by the 31 January 2024 at the latest. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back."

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS

2/

On people with #mecfs:

“The layers of their life often strip away like paint, and a first casualty is often their job and whatever worth they got from it. If they are lucky, they have the assistance of a family. If unlucky, they battle in solitude”

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME

UK #DecodeME
"Our focus now is on getting as many spit kits back as possible. If you are yet to return your kit, please do so by the 31 January 2024 at the latest. Each sample returned will strengthen the results of our research, so we really appreciate every single kit sent back."

https://www.decodeme.org.uk

#DecodeMEStudy @mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME

2/
Identification of CD8 T-cell dysfunction associated with symptoms in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome (#MECFS) & #LongCOVID and treatment with a nebulized antioxidant/anti-pathogen agent in a retrospective case series

Free
https://www.sciencedirect.com/science/article/pii/S2666354623001345

@mecfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #ME #MyE @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC

2/
Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021. A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients."

3-minute TV clip:
https://youtu.be/pkyU41BHgnM?si=z9-2HJAx710bqfRq

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS #SystemicExertionIntoleranceDisease
#MEawareness #livingwithME #CanYouSeeMENow

2/
Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021. A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients."

3-minute TV clip:
https://youtu.be/pkyU41BHgnM?si=z9-2HJAx710bqfRq

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS #SystemicExertionIntoleranceDisease
#MEawareness #livingwithME #CanYouSeeMENow

2/
Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021. A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients."

3-minute TV clip:
https://youtu.be/pkyU41BHgnM?si=z9-2HJAx710bqfRq

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS #SystemicExertionIntoleranceDisease
#MEawareness #livingwithME #CanYouSeeMENow

2/
Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021. A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients."

3-minute TV clip:
https://youtu.be/pkyU41BHgnM?si=z9-2HJAx710bqfRq

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS #SystemicExertionIntoleranceDisease
#MEawareness #livingwithME #CanYouSeeMENow

2/
Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021. A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients."

3-minute TV clip:
https://youtu.be/pkyU41BHgnM?si=z9-2HJAx710bqfRq

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS #SystemicExertionIntoleranceDisease
#MEawareness #livingwithME #CanYouSeeMENow

🧵
BBC Radio Devon & BBC news article

Daughter's death 'could have been avoided'

"The mother of a woman who died after being discharged from hospital with #MyalgicEncephalomyelitis says the NHS has no way to treat the condition (contd)”

https://www.bbc.co.uk/news/uk-england-devon-67748453

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS

1/

🧵
BBC Radio Devon & BBC news article

Daughter's death 'could have been avoided'

"The mother of a woman who died after being discharged from hospital with #MyalgicEncephalomyelitis says the NHS has no way to treat the condition (contd)”

https://www.bbc.co.uk/news/uk-england-devon-67748453

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS

1/

🧵
BBC Radio Devon & BBC news article

Daughter's death 'could have been avoided'

"The mother of a woman who died after being discharged from hospital with #MyalgicEncephalomyelitis says the NHS has no way to treat the condition (contd)”

https://www.bbc.co.uk/news/uk-england-devon-67748453

@mecfs #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MyalgicE #MyE #ME #millionsmissing #CFSME #CFIDS
#SEID #NeuroME #EndMECFS

1/