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#pese — Public Fediverse posts

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

  1. If you learn nothing else from my thread today, please remember this:

    🚨 Exercise is NOT recommended for people with ME/CFS!

    Any exertion, mental or physical, is not good for people who have post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE)

    This includes a significant portion of people with Long Covid.

    Video with more info:

    youtube.com/watch?v=wxSwYUennBA

    4/n

    @mecfs @longcovid

    #MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay #PEM #PESE

  2. If you learn nothing else from my thread today, please remember this:

    🚨 Exercise is NOT recommended for people with ME/CFS!

    Any exertion, mental or physical, is not good for people who have post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE)

    This includes a significant portion of people with Long Covid.

    Video with more info:

    youtube.com/watch?v=wxSwYUennBA

    4/n

    @mecfs @longcovid

    #MEcfs #LongCovid #MillionsMissing #MEAwarenessDay #WorldMEDay #PEM #PESE

  3. 3/

    “The work has to continue, the messy, mundane, bureaucratic and deeply human work: documenting symptoms, pushing for screening and access, training clinicians in #PESE / #PEM and dysautonomia, funding longitudinal research, and insisting that care be co-designed with the people who will use it”

    #mecfs #longcovid #pots
    @mecfs @longcovid @pots

  4. 2/‬

    ‪He highlights how post-exertional malaise can lead a worsening of the condition which could be permanent.‬

    #LongCovid#MEcfs #PostExertionalMalaise #PEM #CFS #PEM #PESE

    @mecfs @longcovid

  5. By @RTHM_Health

    "A new study suggests that exercise doesn’t clear microclots in people with Long COVID—it just fragments them into smaller ones. These smaller clots are linked to increased inflammation and impaired oxygen transport, which may help explain post-exertional malaise (PEM) and post-exertional symptom exacerbation (PESE)—a worsening of symptoms after even mild physical or mental effort."

    "Researchers observed these microclot and inflammatory changes even after submaximal exertion, highlighting the need for caution when recommending exercise-based therapies."

    Want more research breakdowns like this? Sign up for our email list at linktr.ee/rthm_health

    🔗 DOI: doi.org/10.21203/rs.3.rs-67177

    #LongCOVID #ChronicFatigue #pwLC #PostCOVID #rthm_health #LongCOVIDResearch #PESE #PEM #IACC #COVID19 #Microclots @auscovid19

  6. If you learn nothing else from my thread today, please remember this:

    Exercise is NOT recommended for people with ME/CFS!

    Exercise is not good for anyone who has post-exertional malaise (PEM), sometimes called post-exertional symptom exacerbation (PESE), and that includes a significant portion of people with Long Covid.

    This video has more info:

    youtube.com/watch?v=wxSwYUennB

    3/n

    @mecfs @longcovid

    #MEcfs #PwME #PEM #PESE #LongCovid #MillionsMissing #MEAwareness #WorldMEDay

  7. 3/
    Full thread on “Skeletal muscle adaptions and post-exertional malaise in Long Covid” by corresponding author:
    threadreaderapp.com/thread/186

    #LongCovid #PASC #PwLC #PEM #PESE
    @longcovid

  8. New UK study:

    Effect of a Personalised Pacing and Active Rest Rehabilitation Programme on Post-Exertional Symptom Exacerbation and Health Status in Long COVID (PACELOC).

    preprints.org/manuscript/20241

    Hashtags:
    @longcovid
    #LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
    #PESE #PEM @mecfs #mecfs

  9. Congratulations to Mark Vink on his new paper 👏

    Using Exercise Therapy for #LongCOVID Without Screening for Post-Exertional Symptom Exacerbation Potentially Increases the Risks for Patients Who Suffer from it: A Reanalysis of 3 Systematic Reviews

    crimsonpublishers.com/rism/pdf

    Hashtags:
    @longcovid
    #PwLC #postcovid #postcovid19 #Covidlonghaulers #PostCovidSyndrome #longhaulers #PASC
    @covid19 #Coronavirus
    #COVID19 #COVID #COVID_19 #COVIDー19 #SARSCoV2
    @auscovid19
    #PESE #PostExertionalMalaise #PEM

  10. 15/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this video was very good. Great to have a doctor who gets it

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

  11. 14/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I doubt this happens in every case: I'm not sure they're even claiming that

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

  12. 9/ (updated version)

    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  13. 13/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  14. 12/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  15. 11/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  16. 10/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  17. 8/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  18. 7/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  19. 6/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  20. 5/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  21. 4/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  22. 3/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  23. 2/
    From 24-minute video from MEAction & Patient-Led Research Collaborative

    "Understanding Post-Exertional Malaise - Dr Brayden Yellman"

    youtube.com/watch?v=cGQFGgb_Pt

    I thought this was very good. Great to have a doctor who gets it

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

  24. 8/

    “Returning from adventures away from my home always induced days of a crash.  And sometimes this crash was delayed by up to 48 hours, just when you thought ‘yey, I got away with it… BAM’”

    #PEM #PostExertionalMalaise #MEcfs #PESE #PENE #PwME @mecfs

  25. OMF will be using this questionnaire as one of the outcome measures for the Life Improvement Trial (LIFT). Learn more about the LIFT

    #MECFS

    #PEM

    #PENE

    #PESE

    #pwME

    The LIFT Trial

    omf.ngo/the-life-improvement-t

  26. In Video 7 of the PEM series, Dr. Brayden Yellman highlights the critical importance of resting and utilizing a careful regimen of both physical and cognitive pacing to avoid entering a physiological state of post-exertional malaise.

    Full video at:
    youtube.com/watch?v=oLC2tZMPbs

    @mecfs

    #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE @longcovid
    #LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
    #pem #pese #pene

  27. Bateman Horne Center

    In Video 5 of the post-exertional malaise [PEM] series, a study investigating the relationship between a resting state and post-exercise induced PEM shows significant increases in post-exercise ME/CFS brain activity, directly correlated with the number & magnitude of patient reported

    youtube.com/watch?v=nn5W_XaIsU

    #PEM #PESE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #MERC #MedicalEducation #MillionsMissing #LongCOVID @mecfs

  28. 3/

    “You might see someone who has PEM [post-exertional malaise] on a good day when they are trying to have a normal life. You’re not going to see them 2 days later when they're crashed & unable to move...that’s 1 of the forces that... hides the reality & scope of these conditions from public understanding."

    @longcovid @mecfs #LongCovid #pwlc #pem #pese #pene #PostCovid #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
    #PwME

  29. The first video in the education series for rehab professionals from the Bateman Horne Center introduces terms, explains the important role of physical and occupational therapists for individuals with ME/CFS and #LongCovid and calls attention to how the medical system has underserved this population.

    youtu.be/PvBEdX759yE

    @longcovid #mecfs @mecfs #cfs #PostExertional #postexertionalmalaise #pem #pese #pene #MyalgicEncephalomyelitis #PostCovid #PostCovid19 #pwlc #pwme

  30. 8/

    ““Like, what the hell, body? Seriously? This is what you’re going to get mad about? All I did was blow some notes.” She tries not to be too hard on her body, though. “It’s not deliberately being an asshole to make your life miserable,” she says. “It fights to survive. If you feel like shit right now, it’s because it’s trying.”

    @cfs #postexertionalmalaise #pese #PEM #pene #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme #PwMEs #cfsme #CFIDS #SEID

  31. #MEawarenessHour
    #Brainfog: disfunción cognitiva
    #PEM #ANPE #PESE: Exacerbación de síntomas post-esfuerzo por actividad física, cognitiva, emocional... a veces mínima.
    Con esto en mente.
    Tardo mucho en escribir un toot, un tuit, etc.. y empeoro "si me paso". Si a esto le añado la descripción de imágenes que prácticamente es otro post ¿tiene sentido que alguien con discapacidad enferme por ayudar a alguien con otro tipo de #discapacidad? #AltText
    #EncefalomielitisMialgica #EMsfc #MEcfs #Reflexión

  32. Slowly figuring out how to make the Fitbit work better for #pacing. It's set up to be constantly all "rah! rah! climb those stairs! burn that fat! get that heart rate up!" quite aggravating, to say the least.

    But I think I got most of its little cheers turned off, and I figured out I can set my own maximum heart rate. The fitbit still thinks I should be in higher "zones" as much as possible, which is annoying.

    I just programmed a custom zone, though, which goes from 10bpm above my resting rate to 5 below my max. Hopefully I'll be able to see on the graph when I've been exerting a little but not too much.

    #PEM #PESE #PENE #MECFS #ME #CFS #fibromyalgia #Fibro #ChronicIllness #LongCOVID #LongHauler