#neurome — Public Fediverse posts

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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath

#MyalgicE #MEeps #CFSME #LongCovid #NeuroME @mecfs @longcovid

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“On the theme of personal burden and quality of life, another stated, ““She said, “My life has become an inhumane existence.” She left a husband and two teenaged children whom she referred to when she said, “I believe they have lost their mother to ME.””

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

(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

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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath

#MyalgicE #MEeps #CFSME #LongCovid #NeuroME
@mecfs @longcovid

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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath.

#MyalgicE #MEeps #CFSME #LongCovid #NeuroME @longcovid @mecfs

⬆️

Hope to see some of you at this event in Dublin 15. 👋

If the weather is suitable, I plan to be outside. There are benches there for this purpose.
#NeuroME #MyalgicEncephalomyelitis

@IrishMECFSAssociation @mecfs

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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath

#MyalgicE #MEeps #CFSME #LongCovid #NeuroME @mecfs @longcovid

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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath

#MyalgicE #MEeps #CFSME #LongCovid #NeuroME #mecfs
@mecfs #longcovid @longcovid

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“You can help support patients to handle this life transition, the grief, the stress that comes from having this illness without removing it.”

#CFSME #NeuroME #mecfs
@mecfs @chronicillness

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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath.

#MyalgicE #MEeps #CFSME #LongCovid #NeuroME @mecfs @longcovid

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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

From: @Notjustfatigue

Is it a coincidence that three times more women than men are living with #MECFS and #MECFS is our country’s most underfunded disease, with respect to the severity of disease and the number of people affected? No. This is the seventh video in a ten part video series by #NotJustFatigue

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

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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

Just one week to go with Lee Colligan’s marathon 2500km walk around Ireland in memory of his brother and in aid of ME.

People can donate to us at
https://www.idonate.ie/fundraiser/LeeColligan

Donation link for Action for ME
https://joshcolligan.muchloved.com/

#SevereME @mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #millionsmissing #EndMECFS @severeme

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More info on this Open Medicine Foundation Australia project: "SPOT-ME: Serial Pediatric Omics Tracking for ME/CFS"

Aims include deeply profiling the biology of patients vs controls, testing cellular energy metabolism changes and evaluating brain function with MRI.

https://www.omfaustralia.ngo/pediatrics-me-cfs-deep-omics-profiling-and-longitudinal-study/

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

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From presentation: "Through an illuminating blend of life transcription & deep imaginative projection, he shows how placing fiction into the stories of our damaged lives can remind us of who we are & who we might have been, even when so much of us has been taken away by illness"

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

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"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

A series of online workshops are running this summer for researchers, health professionals and people with ME, with the aim to raise the profile of #MECFS clinical research, increase collaboration, attract new researchers & formulate research priorities

https://meassociation.org.uk/2024/05/research-working-together-to-find-answers-to-me-cfs/

@mecfs

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

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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

From X:

Recruitment for our recent Mason-funded ME/CFS biomedical study in VIC, Australia is LIVE! Please get in touch if interested or have questions. Some more info: https://docs.google.com/document/d/1-2H8pkgqrPRG_YLuda5au0_kdH69Xktr/edit?usp=sharing&ouid=106411990730824976565&rtpof=true&sd=true
We're doing home visits for severely ill people.

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #LongCovid #Victoria #Science

🧵

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

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“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

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Actigraphic and Genetic Characterization of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Phenotypes in the UK Biobank

Abstract only:
https://www.neurology.org/doi/abs/10.1212/WNL.0000000000204829

@mecfs

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

🧵
"ME/CFS Isn't Just Misunderstood, It's Actively Neglected"

https://www.popsugar.com/fitness/mecfs-post-covid-49344168

'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME @longcovid
#LongCovid #PwLC

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

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USA:

Solve M.E. has announced details for Advocacy Week, April 15-19, with "actions for every energy level and ability to join, from social media posts to virtual meetings with congressional leaders”
https://solvecfs.org/advocacy/advocacy-week/advocacyweek2024

Register for congressional meetings by March 15
https://lobbydayregistration.wufoo.com/forms/zqjcq411pgac09/

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

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Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath

#MyalgicE #MEeps #CFSME #LongCovid #NeuroME @mecfs