pem

  1. Phoenix Rising Articles

    Article When Pain is a Part of Your Crash: Insights From Research

    When Pain is a Part of Your Crash: Insights From Research For some people, pain is a significant component of their crashes. Image by vaxZine from Flickr, licensed CC BY-NC-ND 2.0. By Bronc Late last year Dr. Dane Cook, along with Dr. Jacob Lindheimer and colleagues, published a systematic...
  2. Pyrrhus

    ME/CFS Crash Survival Guide (from Bateman Horne Center)

    ME/CFS Crash Survival Guide (from Bateman Horne Center) The Bateman Horne Center has put together an easy-to-use guide to prepare for crashes in advance: https://batemanhornecenter.org/education/mecfs-guidebook/ They also provide helpful supplies to accompany a crash: Diagnosis Cheat...
  3. RyeRyeBread

    Waking up feeling like I've crashed [PEM] in my sleep?

    I've been waking up [from naps and general overnight sleeping] feeling like I've crashed in my sleep, and been a little caught off guard because I didn't think I was going to- Anyone else? When I crash/have a PEM episode, I usually have a whole handful of symptoms that occur, as somewhat of a...
  4. RyeRyeBread

    How do you classify your PEM? How does your PEM behave? How has it changed over time?

    I classify my PEM in two main ways - crashes (PEM main "episodes") & flares (the hours/days of recovery/worsening of symptoms and baseline after a PEM crash). Looks like this: I'll do an activity/exert myself >> I crash (for me, usually a few hours after the activity, and lasting for 2-6 hrs...
  5. C

    Review of the Midbrain Ascending Arousal Network Nuclei and Implications for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (M... (Baraniuk, 2022)

    Review of the Midbrain Ascending Arousal Network Nuclei and Implications for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Gulf War Illness (GWI) and Postexertional Malaise (PEM) Abstract Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS and Gulf War Illness (GWI) share...
  6. E

    Hot shower/submersion of head in hot water for PEM relief

    I saw someone on Twitter make a post about how if they submerged the top of their heads in hot water for 7 minutes it relieves some of their symptoms. I've only tried this twice for PEM relief but I am noticing a difference. Will need to repeat a few times to make sure it's not a coincidence...
  7. Nord Wolf

    Vision Loss with PEM

    One of my 55 major symptoms include the loss of vision when with trenches in my rather constant state of PEM. I can see muted light, but my actual vision is gone. I explain it best like this: try imagining an artists glass pallet filled with a mess of smeared color (zero definition, depth...
  8. TracyD

    What's your first/last sign of PEM?

    To put my data-science lessons to work, I'm trying to develop an early-warning system for PEM. I would appreciate others' input: For some of us, there's a delay between overexertion (or whatever the trigger is) and the onset of full PEM. In my case, it's often 36-48 hours before the huge...
  9. Pyrrhus

    Pain-related post-exertional malaise in ME/CFS and Fibromyalgia: A systematic review and three-level meta-analysis (Barhorst et al., 2021)

    Pain-related post-exertional malaise in ME/CFS and Fibromyalgia: A systematic review and three-level meta-analysis (Barhorst et al., 2021) https://doi.org/10.1093/pm/pnab308 Excerpt:
  10. Pyrrhus

    Prof. Betsy Keller Video: PEM – strategies for determining and managing the cardinal symptom of ME/CFS

    Prof. Betsy Keller Video: PEM – strategies for determining and managing the cardinal symptom of ME/CFS This was a presentation at a recent Swedish scientific conference:
  11. frozenborderline

    Doing buddhist practices with low energy

    Since having severe ME I have done a lot of emotional compartmentalization bc emotions take too much energy to process usually. I dont know if this is emotionally healthy but it seems to be what my body needs This has come into conflict with the buddhist practice I'm trying to do. The...
  12. Martin aka paused||M.E.

    Crashes - what does science tell us for practical use?

    My fear pwME on PR, as some of you might know, I'm very engaged in advocating and feel a kind of responsibility to educate pwME who can't read/understand/handle all the science on PubMed and elsewhere and want to translate that into plain language. Atm I'm dealing with a bad crash again and...
  13. nerd

    Chronic Fatigue Syndrome and Cardiovascular Disease: JACC State-of-the-Art Review

    Natelson BH, Brunjes DL, Mancini D. Chronic Fatigue Syndrome and Cardiovascular Disease: JACC State-of-the-Art Review. J Am Coll Cardiol. 2021 Sep 7;78(10):1056-1067 doi: 10.1016/j.jacc.2021.06.045 PMID: 34474739 Abstract
  14. MartinK

    Do sore throat / tonsil ulcers make you worse - PEM/inflammation?

    I realized one thing and I'm very interested. Before my ME/CFS started, I suffered also a lot from various upper respiratory illnesses - sore throat / tonsil ulcers / influenza. It often met me even when I was mild / moderate, not so much now, probably because Im at home at constant...
  15. frozenborderline

    Does pneumonia cause generalized muscle pains and spasms? Or PEM?

    I have this in hospital during cci surgery recovery and my ability to move is suddenly way worse, pain and muscle spasms way worse, they're being unclear about whether the pneumonia is totally the problem It could be worsened tethered cord. But the pneumonia and low grade fever could maybe...
  16. Phoenix Rising Articles

    Article Central Autonomic Network Disturbance in People with ME: A Conversation with Dr. Mark Zinn

    Central Autonomic Network Disturbance in People with ME: A Conversation with Dr. Mark Zinn Dr. Mark Zinn, along with his late wife Dr. Marcie Zinn, pioneered the use of advanced electro-encephalographic techniques to study myalgic encephalomyelitis. Image courtesy of Dr. Mark Zinn. by Bronc...
  17. MartinK

    majority or minority ME/CFS worsens only physical activity (not mental) (POLL)

    I'm very interested in this! In last years I wrote with many ME/CFS patients, or read posts here, on reddit, FB groups...whatever. After that long time, I feel like one of the few who have long-term severe and mooore seveve ME/CFS or PEM/crashes with no worsening mental activity...no brain fog...
  18. 20somethingspoonie

    How do I recondition after being bed bound?

    Because of the pandemic, I've pretty much stayed in bed for the last year. I want to slowly start to recondition, but I don't know where to start, especially because I want to avoid PEM.
  19. E

    Anyone feeling like he's living on a thread

    I have those very nasty PEM. Each time i had a PEM and i didn't even push myself my function decreased so much that it felt it was like a major evenement in my life as a stroke or a car accident. I can't get out of my energy enveloppe even for 10 seconds. I really feel that the next big PEM...
  20. Pyrrhus

    Post-Concussion Syndrome may come with PEM

    A common question that people ask is: "Are there any other conditions that also come with PEM?" Post-Concussion Syndrome (PCS) follows a Traumatic Brain Injury (TBI). It is often suggested that Post-Concussion Syndrome (PCS) may possibly come with PEM/PENE. However, I am not aware of any...
  21. W

    2-day neurocognitive testing to measure cognitive crash?

    We're trying to justify treatment to insurance, but a standard 2-day exercise test doesn't get at my son's primary functional issues. His key items are the fatigue, anxiety, intractable headache, brain fog, bad sleep ... AND the neurocognitive/emotional crash he has after cognitive/emotional...
  22. Pyrrhus

    The evidence base for physiotherapy in ME/CFS when considering PEM: a systematic review and narrative synthesis (Wormgoor and Rodenburg, 2021)

    The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering post-exertional malaise: a systematic review and narrative synthesis https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-020-02683-4 Excerpt: (emphasis added)
  23. Pyrrhus

    The development of an instrument to assess post-exertional malaise in patients with ME/CFS (Jason et al., 2018)

    This paper establishes a questionnaire that can measure Post-Exertional Malaise (PEM). (I don't think this paper from 2018 has been discussed yet.) The development of an instrument to assess post-exertional malaise in patients with myalgic encephalomyelitis and chronic fatigue syndrome (Jason...
  24. Pyrrhus

    Meta-analysis investigating post-exertional malaise between patients and controls (Brown and Jason, 2018)

    This paper establishes Post-Exertional Malaise (PEM) as a cardinal symptom in ME. (I don't think this paper from 2018 has been discussed yet.) Meta-analysis investigating post-exertional malaise between patients and controls https://journals.sagepub.com/doi/10.1177/1359105318784161 Excerpt:
  25. Gemini

    NIH: ME/CFS "PEM" Focus Group Study Results Published

    The first paper from the NIH’s post-infectious ME/CFS study was published in Frontiers in Neurology: Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome...
  26. Murph

    Cardiopulmonary responses to exercise in an individual with ME/CFS during long-term treatment with intravenous saline: A case study (Davenport 2020)

    Cardiopulmonary responses to exercise in an individual with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome during long-term treatment with intravenous saline: A case study Article type: Research Article Authors: Davenport, Todd E.*; a; b | Ward, Michael...
  27. ChookityPop

    If I use my muscles a tiny bit too much I get PEM.

    Its so weird. Last year my legs suddenly "stopped" working. I got crazy lactic acid buildup and lots of pain. Walking in general sucks, but stairs and walking downhill is a lot worse. In november I removed snow from my car and "destroyed" my arms and got crazy PEM afterwards. I bought this car...
  28. keepswimming

    How soon does PEM hit after exertion?

    I'm curious about this. Personally, sometimes PEM hits the next day, but often I find it takes a few days to hit and I wondered if this is the case for anyone else. I find this extra confusing, as I just think I've coped with something and then it hits me! A case in point was this week, I had a...
  29. O

    Anyone's symptoms get worse after doing anything stress related?

    I want to here from people who experience PEM and what the resulting symptoms are from PEM.
  30. hmnr asg

    handling mentally challenging tasks

    Hi everyone, So there is a lot of discussion on the forum about handling physically demanding tasks, e.g., using a heart rate monitor to ensure one's heart rate is not going above some baseline and breaking the tasks into smaller chunks and resting in between. What I like to ask the members...