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#postexertionalmalaise — Public Fediverse posts

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

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  1. Tom Kindlon @[email protected]

    2/
    POST-EXERTIONAL MALAISE (PEM) IN ME/CFS

    #mecfs #pem #postexertionalmalaise @mecfs

    #mecfs #pem #postexertionalmalaise
  2. Tom Kindlon @[email protected]

    2/
    What post-exertional malaise (PEM) in ME/CFS feels like

    #mecfs #pem #PostExertionalMalaise @mecfs

    #mecfs #pem #postexertionalmalaise
  3. Tom Kindlon @[email protected]

    Post-Exertional Malaise in Long COVID and Post-Vaccine Syndrome: Why “Exercise More” Is the Wrong Answer

    drpierrekory.com/blog/post-exe

    Pity that there is only one reference to ME/CFS in the (long) article

    Screenshot from October AMMES newsletter

    #LongCovid #PostExertionalMalaise #PEM @longcovid

    #longcovid #postexertionalmalaise #pem
  4. Tom Kindlon @[email protected]

    The Debt Came Due: Notes From a Crash

    darthfoo.substack.com/p/the-de

    Screenshot from September AMMES newsletter

    #MEcfs #LongCovid #PostExertionalMalaise #PEM #PwME @mecfs @longcovid

    #mecfs #longcovid #postexertionalmalaise #pem #pwme
  5. Tom Kindlon @[email protected]

    From Germany 🇩🇪

    Registered interventional trials fail to cover patient-prioritised treatments in Post-COVID condition (PCC)

    researchsquare.com/article/rs-

    s4me.info/threads/registered-i

    Screenshot from latest Science for ME weekly update

    #LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #PostExertionalMalaise

    #longcovid #pasc #pwlc #postcovid #postcovid19 #postcovidsyndrome
  6. Tom Kindlon @[email protected]

    eNOS Uncoupling, Shear-Stress Tolerance, and the Two-Threshold Model of Post-Exertional Malaise in Long COVID

    onlinelibrary.wiley.com/doi/10

    Discussion where lead author takes part:
    s4me.info/threads/shear-stress

    Screenshot from latest Science for ME weekly update

    @longcovid
    #LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers
    #PostExertionalMalaise #PEM

    #longcovid #pasc #pwlc #postcovid #postcovid19 #postcovidsyndrome
  7. Tom Kindlon @[email protected]

    "While caring for a husband with early-stage dementia they pushed through relentlessly & ended up totally bed-bound. Their message to the group was to respect your own limits & stay tuned in to your body, because the cost of caregiving can be losing the very capacity to help"

    From BHC August Event Recap: "Caretaking While Chronically Ill - Parenting or Caring for Family Members"
    batemanhornecenter.org/wp-cont

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

    1/

    #postexertionalmalaise #pem #mecfs #longcovid #pwme #cfs
  8. Tom Kindlon @[email protected]

    10/
    “Whilst every individual’s experience is unique, it is striking how many shared themes emerge across the PEM survey responses."

    #PostExertionalMalaise #PwME #PEM #MEcfs #CFS
    @mecfs

    #postexertionalmalaise #pwme #pem #mecfs #cfs
  9. Tom Kindlon @[email protected]

    Action for ME's PRIME webinar on Post-exertional malaise (PEM) is now available on YouTube

    youtube.com/watch?v=Ad2RWSmpfjM

    s4me.info/threads/fact-sheet-2

    Screenshot from latest Science for ME @s4me weekly update

    #MEcfs #LongCovid @mecfs @longcovid #PwME #PostExertionalMalaise #PEM

    #mecfs #longcovid #pwme #postexertionalmalaise #pem
  10. Science for ME (S4ME) @[email protected]

    One of this week's coming events -

    PRIME Webinar 3: Post-Exertional Malaise (PEM)

    Thursday, July 30
    2-5 pm GMT

    Announcement:
    actionforme.org.uk/prime-works

    Registration (Zoom):
    us02web.zoom.us/webinar/regist

    Programme:
    actionforme.org.uk/wp-content/

    @mecfs @longcovid

    #MEcfs #PwME #PEM #PostExertionalMalaise

    #mecfs #pwme #pem #postexertionalmalaise
  11. Department of Communications @[email protected]

    ME/CFS isn’t ordinary fatigue. Its hallmark is a delayed symptom crash after even minor activity. Recognition, pacing, and supportive care matter.

    #MECFS #PostExertionalMalaise #ChronicIllness #Telehealth #NeuroimmuneHealth

    #mecfs #postexertionalmalaise #chronicillness #telehealth #neuroimmunehealth
  12. Tom Kindlon @[email protected]

    RE: disabled.social/@tomkindlon/11

    Press Release Date 05-05-2026

    "Australian Leaders Issue Joint Statement on ME/CFS and PEM"

    natlawreview.com/press-release

    2 months late as I am behind with some reading

    #MEcfs #LongCovid #PostExertionalMalaise #PEM
    @mecfs @longcovid

    #mecfs #longcovid #postexertionalmalaise #pem
  13. Tom Kindlon @[email protected]

    Recognising #PEM early in your patients is critical for safe and #MECFS informed care.

    PEM can be hidden - patients may appear well during appointments but experience significant deterioration afterwards.

    You can learn more about PEM and #pacing - zurl.co/nnY1W

    #MEcfs #LongCovid #PostExertionalMalaise #PEM @mecfs @longcovid

    #pem #mecfs #pacing #longcovid #postexertionalmalaise
  14. Tom Kindlon @[email protected]

    Communiqué: Fatigue isn't the same as post-exertional malaise (PEM)

    "PEM is real. It is serious. And it must not be made worse by misunderstanding."

    Signed by researchers, clinicians and advocates.
    emerge.org.au/wp-content/uploa

    #MEcfs #LongCovid #PostExertionalMalaise #PEM @mecfs @longcovid

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

    🧵
    Another excellent blog by Fred Rossi who is well worth following

    "The Patient Who Isn’t Supposed to Exist"

    darthfoo.substack.com/p/the-pa

    Nominally on the recent, controversial WIRED article but the points are pretty general

    #LongCovid #MEcfs #PostExertionalMalaise #PEM #PwME #ME #MyalgicE
    @mecfs
    @longcovid

    1/

    #longcovid #mecfs #postexertionalmalaise #pem #pwme #me
  16. David Tuller @[email protected]

    The “Wired” Account of Cancelled Exercise Study for Long Covid at University of Virginia

    By David Tuller, DrPH On June 1st, Wired published a 7,600-word lollapalooza about mind-body interventions for Long Covid. The article, written by Alan Levinovitz, a professor of religion at James Madison University, posited that angry patients were derailing important research into these and other psychological and behavioral treatments. For balance, Levinovitz quoted multiple critics of these approaches (including me), but at key moments he stacked the deck in favor of his own interpretations.  One example, which I mentioned in an earlier post, involved the discussion of the PACE trial and related research. Levinovitz ignored clear evidence of serious methodological flaws and presented these disputes as matters of “they said, they said.” In another example, he offered what appeared to be a slam-dunk case of a patient suppressing valuable research, in the process portraying an unnamed University of Virginia law professor as an unreasonable anti-science advocate. But he omitted a key detail regarding the study the professor was protesting, rendering their protests hard to comprehend. Moreover, he did not offer the professor a chance to explain their perspective, and then failed to shield their identity from the public. Here’s the relevant section of the article:  “If overcoming opposition feels too burdensome or controversial, researchers may simply abandon a trial. Siddhartha Angadi is an exercise physiologist at the University of Virginia who specializes in rehabilitation. He designed a long Covid exercise trial with a cardiologist and a pulmonologist, both of whom had experience treating patients with severe heart failure. (In rehabilitation medicine, ‘exercise’ means physical activity in service of rehabilitation, so standing up from a chair could qualify.) The IRB approved it. But then a UVA law professor and long Covid patient emailed him and the IRB with ‘grave concerns’ about the trial. There was ‘no way this would be approved if the …

    trialbyerror.org/2026/06/16/th

    #postexertionalmalaise
  17. Tom Kindlon @[email protected]

    UK PRIME Webinar 3 on PEM Thursday 30th July, 2026 2-5 pm GMT

    actionforme.org.uk/prime-works

    actionforme.org.uk/wp-content/

    Screenshot from Science for ME @s4me weekly update

    #LongCovid #MEcfs #PwME #PostExertionalMalaise #PEM

    #longcovid #mecfs #pwme #postexertionalmalaise #pem
  18. Tom Kindlon @[email protected]

    I like many other people thought this blog post was very good

    "Why I Can’t Just Meet You for Dinner"

    substack.com/home/post/p-17829

    Screenshot from AMMES May 2026 Newsletter

    #MEcfs @longcovid
    #LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #PEM #PostExertionalMalaise
    #PwME #ME #MyalgicE
    @mecfs

    #mecfs #longcovid #pasc #pwlc #postcovid #postcovid19
  19. Dr. Karin Kelle-Herfurth @[email protected]

    „Normal findings at rest do not signify normal function; they merely indicate that the system has not yet been sufficiently challenged.” Paul Watton & Bhupesh Prusty: Reframing #MECFS: toward a unified mechanistic model of chronic post-infectious diseases #MEAwarenessHour #PostExertionalMalaise

    Reframing ME/CFS: toward a uni...

    #mecfs #meawarenesshour #postexertionalmalaise
  20. burningbecks @[email protected]

    Hammer:
    An der Charité Berlin wird ein Test zur "Objektivierung" (messbarer Nachweis) der PEM entwickelt.
    Aktueller Stand: frei zugänglich.

    Und gemessen wird nicht mit irgendeiner Goldrandlösung, sondern einem Plastik-Gerät vom Online-Marktplatz eures Vertrauens!
    Sowas gibt's ab 20€. 🤯

    *We measured the HGS with a digital hand dynamometer (CAMRY, model: SCACAM-EH101) in two separate sessions with a recovery break of 60 min between the sessions.*

    mecfs.de/was-ist-me-cfs/pem/

    Studie:
    link.springer.com/article/10.1

    #LongCovid #PostCovid #MECFS #PEM #PostExertionalMalaise #Fatigue

    #longcovid #postcovid #mecfs #pem #postexertionalmalaise #fatigue
  21. Tom Kindlon @[email protected]

    5-page post-exertional malaise ( #PEM) fact sheet
    s4me.info/docs/PEM_Factsheet.p

    Headings:
    -Characteristics of PEM
    -Symptoms of PEM
    -Exertion and other PEM triggers
    -Effects of exertion that are not PEM
    -Living with PEM
    -Examples of PEM
    -Research on PEM
    -References

    This was very popular a few months ago so I thought I would re-share it.

    #PostExertionalMalaise #PEM
    #MEcfs #CFS #pwME #LongCovid @mecfs @longcovid

    #pem #postexertionalmalaise #mecfs #cfs #pwme #longcovid
  22. Tom Kindlon @[email protected]

    Free webinar today in just over 2 hours wherever you are in the world.

    Register here:
    iecho.org/public/program/PRGM1

    I have been impressed by Amy Mooney in the past and have no reason to believe she will be anything but good in this webinar.

    @longcovid
    #LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC
    #PostExertionalMalaise

    #longcovid #pasc #pwlc #postcovid #postcovid19 #postcovidsyndrome
  23. Ahimsa @[email protected]

    Bateman Horne Center is hosting another session of "Coffee" with a Clinician tomorrow

    April 8, 10 am Mountain Time

    Topic: Post-Exertional Malaise (PEM) Part 2

    Learn how PEM is identified and what tools help measure function.

    What questions help identify post-exertional malaise (PEM)?

    Details:

    batemanhornecenter.org/event/c

    Registration:

    batemanhornecenter.zoom.us/mee

    #MEcfs #LongCovid #PEM #PostExertionalMalaise #BatemanHorne

    #mecfs #longcovid #pem #postexertionalmalaise #batemanhorne
  24. Tom Kindlon @[email protected]

    🧵
    Thoughtful blog post by somebody with long Covid and ME/CFS. Initially focuses on describing the post-exertional malaise effects of working 3 days in a row before discussing how the whole illness(es) and the effect it is having on his life is making him feel emotionally

    centerleftstack.substack.com/p

    #MEcfs #PwME #ME #MyalgicE
    @mecfs
    @longcovid
    #LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome
    #PostExertionalMalaise #PEM

    1/

    #mecfs #pwme #me #myalgice #longcovid #pasc
  25. Tom Kindlon @[email protected]

    This image from ME/CFS South Australia refers to this useful webpage on Post-Exertional Malaise (PEM) on the ME/CFS Australia site:
    mecfs.org.au/resources/post-ex
    (the URL redirects here)

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

    #mecfs #pem #postexertionalmalaise #cfs #pwme #myalgicencephalomyelitis
  26. Tom Kindlon @[email protected]

    Long article on the 'mysterious' illness of NBA star Kristaps Porzingis'

    espn.com/nba/story/_/id/481029

    One person has collated just the parts on his health struggles here:
    s4me.info/threads/well-known-f

    Viral onset plus all these symptoms suggest ME/CFS as a strong possibility. Best for his long term health I think to take an extended break

    #PostExertionalMalaise #PEM #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
    @mecfs
    #POTS @pots

    #postexertionalmalaise #pem #mecfs #cfs #pwme #myalgicencephalomyelitis
  27. Tom Kindlon @[email protected]

    Extract from:
    "Physical Therapy (= physiotherapy) Must Catch Up: Teaching ME/CFS is No Longer Optional"

    batemanhornecenter.org/physica

    Related article:
    Clinical Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a Curriculum Thread to Meet Accreditation Standards in Physical Therapy Education
    nsuworks.nova.edu/ijahsp/vol24

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

    #mecfs #cfs #pwme #myalgicencephalomyelitis #chronicfatiguesyndrome #postexertionalmalaise
  28. Tom Kindlon @[email protected]

    A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff (repeat)

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

    @longcovid
    #LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

    #postexertionalmalaise #pem #mecfs #cfs #pwme #myalgicencephalomyelitis
  29. Tom Kindlon @[email protected]

    5/
    From:
    "Why I Can’t Just Meet You for Dinner: The Reality of Post-Exertional Malaise"
    substack.com/home/post/p-17829

    I deteriorated over 15 months from high functioning (full-time education for 4+ years) to #severeME for 31 years ☹️

    PEM = #PostExertionalMalaise

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

    #severeme #postexertionalmalaise #mecfs #longcovid #cfs #pwme
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