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#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

  3. 2/

    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

  4. 2/

    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

  5. ⬆️

    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

  6. 2/

    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

  7. 2/

    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

  8. 10/

    “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

  9. 2/

    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

  10. 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

    1/

  11. 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 notjustfatigue.org

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

  12. 2/
    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.

    omfaustralia.ngo/pediatrics-me

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

  13. 2/

    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

  14. 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

    meassociation.org.uk/2024/05/r

    @mecfs

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

  15. 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

  16. 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

  17. 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 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/

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

    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/

  19. 🧵
    "ME/CFS Isn't Just Misunderstood, It's Actively Neglected"

    popsugar.com/fitness/mecfs-pos

    '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

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

    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/

  21. 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”
    solvecfs.org/advocacy/advocacy

    Register for congressional meetings by March 15
    lobbydayregistration.wufoo.com

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

  22. 2/

    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