• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. MartinK

    How I improved from very severe to moderate in 14 days

    I haven't been here for a long time because I was going through the most challenging time of my life. I began to suffer from extreme insomnia, which gradually worsened all my symptoms - pain, burning in the body, exhaustion. I was falling into a state where I thought I was going to die. And I...
  2. SpinachHands

    Why does my bedbound partner have PEM every day, despite doing nothing?

    They are 100% bedbound, and have done no activity in two months now. It's been a month since I was able to brush their teeth, and I was last able to change their pyjamas over a month ago. Apart from that they do absolutely nothing- I feed them liquid food through a straw, they use a bedpan and...
  3. JasonPerth

    Masterbation and PEM

    Hi, i hope this question is okay to ask, i only feel safe asking it here. When my Condition of ME/CFS was very Mild, something like Sex and Masterbation was something that i could do i believe without PEM, but i could no longer run for example or do heavy lifting as that would cause PEM and many...
  4. serafim

    Does anyone else get gradual onset crashes?

    I’m trying to determine whether i’m in a crash or if it’s something else. I had to travel in early July and that caused me to crash badly. I paced myself but instead of getting better i kept getting PEM from minimal exertion that i normally tolerated even in crashes. I’ve very gradually...
  5. MartinK

    Why does even a hard lying mat tend to trigger PEM?

    Hey guys, I've been noticing a strange symptom for a while now - I'd like to know if anyone else has the same thing. And can anyone help me to think about how it might have to do with the muscles when I have not yet been diagnosed with any muscle disorder. The thing is that my muscles get tired...
  6. S

    📊 Poll- What would you find helpful in a meditation created especially for PEM ?

    There is literally only 1 meditation video on YouTube for PEM,yes one ( ) & it’s less than 18mins long! I’d like to see that change. (as a coping tool,not a cure) I’m requesting that some of my favourite meditation creators address this deficit (& encourage you to do the same if you can spare...
  7. X

    Cholecystokinin - When Bile release becomes an issue

    Hello everyone, I seem to have issues with anything that triggers bile production. I have noticed that whenever I eat bitter foods, high fats(saturated mostly), high protein, soluble fiber and resistant starch, fruit juices (high pectin), exposure to high heat environments, I seem to suffer both...
  8. RyeRyeBread

    Can we discuss regular PEM vs "Rolling" PEM?

    "Rolling" PEM vs Regular PEM What exactly is "Rolling" PEM? How do we tell the difference? Can we have both at the same time? Tips on how to avoid/get out of rolling PEM cycle?
  9. Pyrrhus

    Post-Exertional Symptom Exacerbation (PESE)

    Post-Exertional Symptom Exacerbation (PESE) Post-Exertional Symptom Exacerbation (PESE) is a term that has been proposed to replace the term Post-Exertional Malaise (PEM). Some say that the use of the word "malaise" in PEM minimizes the seriousness of PEM. Some say that "symptom exacerbation"...
  10. 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...
  11. 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...
  12. 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...
  13. 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...
  14. 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...
  15. 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...
  16. 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...
  17. 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...
  18. 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:
  19. 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:
  20. 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...
  21. 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...
  22. 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
  23. 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...
  24. 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...
  25. 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...
  26. 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...
  27. 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.
  28. 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...
  29. 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...
  30. 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...