home.social

#me-cfs — Public Fediverse posts

Live and recent posts from across the Fediverse tagged #me-cfs, aggregated by home.social.

fetched live
  1. Tom Kindlon @[email protected] ·

    3/

    From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

    #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

    @mecfs

    #myalgicencephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme
  2. Tom Kindlon @[email protected] ·

    2/

    From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

    #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

    @mecfs

    #myalgicencephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme
  3. Tom Kindlon @[email protected] ·

    🧵
    I thought this 7-page introductory piece written by a medical doctor was very good

    "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer

    storage.e.jimdo.com/file/1caec

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

    1/

    #mecfs #pwme #cfs #myalgicencephalomyelitis #chronicfatiguesyndrome
  4. PaulaToThePeople 😷 @[email protected] ·

    On Friday I'll get a 24 hour blood pressure monitoring and 48 hour ECG (or maybe both will turn out to be 72 hours, since I don't plan to go to the hospital on Saturday and Sunday).
    Then in November I'll have a cardiac stress test.

    There is no expectation that any of the tests will yield meaningful results, they are just needed to justify then having a tilt table test (I'm expecting months on a waiting list), which will lead to a diagnosis... of a symptom!

    There is no plan yet how that diagnosis of a symptom (orthostatic dysregulation) will then help with the diagnosis of the disease, but hey, I only have it for 3 years so far.

    Thanks to corona denialistm medical care for #mecfs, #PostCovid and other #PAIS is basically non-existant.

    #mecfs #postcovid #pais
  5. Octavia Con Amore :pink_moon_and_stars: Succubard's Library @[email protected] ·
    CW: disability, expenses, long covid, POTS

    being disabled is always expensive (I have to pay more for things I can use instead of being able to do it myself), but here's an example of a cost that might not be obvious:

    I have POTS (postural orthostatic tachycardia syndrome), which means my heartrate spikes when not laying flat :psyduck_sweat:

    one tool used to mitigate some of the effects is compression leggings (from my ankles to the bottom of my ribcage), which were $30~40 for a decent pair...

    which now doesn't compress my butt and torso very well because I've lost so much of my musculature over the last year of being bedridden :frog_sus:

    I've been contemplating having to get a new pair that fits a bit better, but I'm also unsure how long that would last :bear_shrug:

    #Disability #Covid #LongCovid #MECFS #POTS

    p.s. if you're not disabled, I need you to take in this information, use it to fuel your empathy for disabled people (you will join us one day, as a note), and act on that empathy :hug_love:

    #disability #covid #longcovid #mecfs #pots
  6. Tom Kindlon @[email protected] ·

    The advocacy group NichtGenesen @NichtGenesen has written a 11-page rebuttal of a book chapter published in Psychotherapie.

    link.springer.com/chapter/10.1

    drive.google.com/file/d/1_9Tty

    Automated translations
    s4me.info/threads/chronisches-

    s4me.info/threads/chronisches-

    s4me.info/threads/chronisches-

    Screenshot from latest Science for ME weekly update

    #MEcfs #PwME #CFS #ME #MyalgicE
    @mecfs #MEcfs_de

    #mecfs #pwme #cfs #me #myalgice #mecfs_de
  7. vulgalour - Free Range Queer @[email protected] ·

    Today's video is going to be a bit late.

    I've been hit with extra work due to a Universal Credit audit in which I appear to have made a mistake in my submission. Numbers have been extra hard for me this last week so the timing isn't great, just stupid ME/CFS brain difficulties.

    PIP is still silent too, no updates whatsoever on the tribunal date, it's been over 6 months now.

    I'm just stuffed. I shouldn't be working and yet... and yet...

    #mecfs #pip

    #mecfs #pip
  8. Fatigatio e.V. @[email protected] ·

    In den vergangenen Jahren habe sich bereits viel bewegt. Ihr Fazit: „Es darf nicht aufhören, und es muss weitergehen.“

    Mehr Informationen findet ihr auf unserer Website unter: fatigatio.de/aktuelles

    #MECFS #LongCovid #Patientenbeteiligung #Gesundheitspolitik #Versorgung #Fatigatio

    (3/3)

    #mecfs #longcovid #patientenbeteiligung #gesundheitspolitik #versorgung #fatigatio
  9. Ahimsa @[email protected] ·

    Here's the latest News in Brief (Sept. 7 - 13) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.

    s4me.info/threads/news-in-brie

    Public posts on the forum can be read by anyone, but if you'd like to join the discussion then you'll need to become a forum member. It's free 😁

    s4me.info/threads/welcome.3818

    @mecfs @longcovid

    #MEcfs #PwME #LongCovid #PwLC #S4ME

    #mecfs #pwme #longcovid #pwlc #s4me
  10. Tom Kindlon @[email protected] ·

    From Germany 🇩🇪

    Postural orthostatic tachycardia syndrome in adolescents with ME/CFS

    frontiersin.org/journals/pedia

    s4me.info/threads/postural-ort

    Screenshot from latest Science for ME weekly update

    #MEcfs #POTS #PwME @pots @mecfs

    #mecfs #pots #pwme
  11. Irish ME/CFS Association @[email protected] ·

    Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon on Wednesday, September 30

    Hopefully we’ll see some of you there
    irishmecfs.org/blog/wednesday-

    Carers/parents/similar welcome.

    #MEcfs #PwME @mecfs

    #mecfs #pwme
  12. Dobrochna @[email protected] ·

    @Lalelilolu

    #mecfs #spoonie #severeme #millionsmissing #disabilityrepresentation

    #mecfs #spoonie #severeme #disabilityrepresentation #millionsmissing
  13. Ashley @[email protected] ·

    When I say I have “brain fog”, this is what is actually going on:
    1. I can’t think too much or at all bc my brain literally feels like it’s overheating
    2. I can’t have conversations bc I keep forgetting what we’re talking about throughout the convo
    3. Also I can’t recall words
    4. It makes learning new things extremely difficult

    #brainfog #chronicillness #mecfs

    #brainfog #chronicillness #mecfs
  14. Barbara Wimmer - shroombab @[email protected] ·

    Meine Kolumne für das Mo Magazin für Menschenrechte über ME/CFS

    sosmitmensch.at/nicht-sichtbar

    #mecfs #longcovid

    #mecfs #longcovid
  15. Tom Kindlon @[email protected] ·

    2/

    “Discussion of LP, its use of NLP, the SMILE trial, the Jason Busse LP trial was thorough and accurate.”

    #LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
    @mecfs @longcovid

    #longcovid #myalgicencephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme
  16. Yogi Jaeger @[email protected] ·

    A health update: month 6 of #Lyme-induced #MECFS #PAIS relapse.

    Now finally biting the bullet and trying that joyless low-histamine diet while phasing out those darn antihistamines. Even the ones that are not supposed to, make me drowsy. No alc, no coffee, low sugar too. Have pity with me.

    Cleared my schedule until late October. I have a life to live, and trying to push through this condition really *does* just make it worse.

    You cannot fight this disease. So try to be gentle to yourself.

    #lyme #mecfs #pais
  17. Tom Kindlon @[email protected] ·

    Conspirituality 325: Long COVID Profiteers

    The second half of this podcast episode discusses Long Covid, ME/CFS, "neuro-bollocks"-treatments such as the Lightning Process, the weak scientific methods behind trials as FALCON, SMILE and PACE and more.
    conspirituality.net/episodes/3

    Haven't listened so far but saw praise for it

    #MEcfs #LongCovid #PwME #CFS @mecfs @longcovid

    1/

    #mecfs #longcovid #pwme #cfs
  18. The Polish Dispatch @[email protected] ·

    Very recent videopresentation about ME/CFS and potential treatment using novel molecule IVO-21, from dr Jay H. Chung lab.
    #MECFS #BrainFog #LongCovid #Mitochondria #ChronicFatigue
    youtube.com/watch?v=IBXYhRInY0o

    #mecfs #brainfog #longcovid #mitochondria #chronicfatigue
  19. Tom Kindlon @[email protected] ·

    2/

    "Seventeen participants (35%) were classified as hypovolemic, 21 (43%) as normovolemic, and 11 (22%) as hypervolemic."

    "findings suggest that static blood volume deficits alone are unlikely to be the principal determinant of OI in ME/CFS."

    #mecfs #cfs

    @mecfs

    #mecfs #cfs
  20. Tom Kindlon @[email protected] ·

    NINDS & MECFSnet - ME/CFS Exchange Webinar Series

    Webinar 1: Persistence of Post-Acute Infection Symptoms: What Causes Them and Why Do They Persist?
    Thursday, Oct. 8, 1 - 3 pm ET

    mecfs.rti.org/news/

    Register
    rtiorg.zoom.us/webinar/registe

    #mecfs #cfs #pwme #longcovid @mecfs @longcovid

    #mecfs #cfs #pwme #longcovid
  21. Tom Kindlon @[email protected] ·

    The Hidden Hierarchy of Illness

    journals.sagepub.com/doi/full/

    Screenshot from September AMMES newsletter

    #MEcfs #PwME #CFS #ME #MyalgicE
    @mecfs

    #mecfs #pwme #cfs #me #myalgice
  22. Tom Kindlon @[email protected] ·

    Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”

    virology.ws/2026/03/13/trial-b

    Screenshot from September AMMES newsletter

    #MEcfs #PwME #CFS #ME #MyalgicE
    @mecfs

    #mecfs #pwme #cfs #me #myalgice