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  1. Yan

    Using Heart rate monitoring to help with pacing.

    Speaking of angry letter writing.. I just finished writing one. And really should rest now and not browse forums! My HR gets up quite fast when I get up from bed. I can do things like cooking etc for few minutes, then go back to bed and usually my HR returns to around 60. But if I do too much...
  2. Yan

    Improvement of Fatigue and Body Composition in Women with Long COVID After Non-Aerobic Therapeutic Exercise Program, 2025, Miana et al.

    Same with me. In my teens I was doing combat sports on semi-international level. Was trained by a olympic gold medalist, and had in the same group another who later won gold. So we had somewhat intense training sessions. I don't remember well but I think that the number of sit-ups might have...
  3. Yan

    Q: Does ME/CFS change rate of caffeine metabolism?

    I've almost always drank huge amounts of coffee. Something like 5-10 large cups a day. I don't remember if it ever had stimulating effect, I drink it because it relaxes me. Sometimes when I wake up from sleep and can't continue fast, I'll drink a cup of coffee and I'll be back sleeping within...
  4. Yan

    Thesis The experiences and coping strategies of individuals with chronic fatigue syndrome (ME/CFS) in the Finnish social security system, 2025, Vaisanen

    It was just a quick question to AI without any fact checks etc. I asked that "which diagnoses get percentually rejected most when applying for disability benefits?". So it's not about Finland either.
  5. Yan

    Thesis The experiences and coping strategies of individuals with chronic fatigue syndrome (ME/CFS) in the Finnish social security system, 2025, Vaisanen

    @Utsikt Probably not directly but I'll quote parts from the introduction, again DeepL. Can guess from here perhaps!
  6. Yan

    Thesis The experiences and coping strategies of individuals with chronic fatigue syndrome (ME/CFS) in the Finnish social security system, 2025, Vaisanen

    Just finished reading/listening this paper fully. I think that the author managed to highlight the everyday struggles of ME/CFS patients in Finland quite well, even though she admits in the end that she didn't know much about the syndrome beforehand. Probably the responses she used were similar...
  7. Yan

    Thesis The experiences and coping strategies of individuals with chronic fatigue syndrome (ME/CFS) in the Finnish social security system, 2025, Vaisanen

    I'm not getting that impression. Also it is stated that 100% had a formal diagnosis of G93.3 postviral and related fatigue syndromes by a medical professional. A quote from the paper, translated by DeepL:
  8. Yan

    Thesis The experiences and coping strategies of individuals with chronic fatigue syndrome (ME/CFS) in the Finnish social security system, 2025, Vaisanen

    I've only read (well, listened with TTS) the first part, but this seems like a well written and researched paper. I'm very interested to learn what experiences others have in Finland! That said, it seems like they only got responses from 39 people, of which 31 were accepted to be used. For that...
  9. Yan

    News from Scandinavia

    I believe that the main blame should go to GP's. Patients spend years visiting their GP's and because the labs don't show anything they don't get believed no matter how ill they are. They'll only get believed if they complain of mental health problems also. Then they are also too young to be...
  10. Yan

    Video query- Help appreciated

    I've used Whisper AI to generate .srt subtitle files for my videos and audiobooks (I know!). The Translation may not be perfect but you can then edit and correct the .srt file. You can then open that file with a video player and it'll show the subtitles. If you want to upload the video with...
  11. Yan

    News from Finland

    Doesn't seem that any media picked up this story. I got today in the mail the printed magazine from the "Finnish Association of People with Physical Disabilities" or "it-magazine" as it's called and it has a tiny few row long summary of the study, with a link to their website to learn more if...
  12. Yan

    News from Scandinavia

    Us Nordics are always in the top positions of the "Happiest people in the world" rankings. We pride ourselves for having the best social security system in the world. Some also say that it's like winning in the lottery to be born here! How is it then possible that stories like this keep getting...
  13. Yan

    Nocturnal Hypoxemia Without Sleep Apnea

    I kept record with my Vivoactive few years ago but stopped because it ate too much of the battery. I also had quite often dips to less than 80% but I suspect that it was because I couldn't keep the watch tightly on my wrist all the time with my swelling and shrinking wrists! I wouldn't trust the...
  14. Yan

    The effects of exercise on dynamic sleep morphology in healthy controls and patients with chronic fatigue syndrome, 2013, Kishi et al

    I've noticed this kind of pattern from my wearable sleep data. REM sleep very often initiated every 1.5h and after that waking up. Few days ago it happened 5 times in a row. Sure, the data might be somewhat unreliable but I do remember seeing lots of different dreams and waking up often. I've...
  15. Yan

    Needing to lie flat

    No dizziness with my OI. And I can have very fast changes. Sometimes 50-70bpm heart rate raise in about 1-2 minutes after standing and staying still. Feeling sick and other kind of worsening symptoms.
  16. Yan

    Do you sleep more as you become more severe?

    I'm also lucky to live alone without any external pressure to practice sleep hygiene (I do shower every day though!), and I can let my sleep free-run naturally. If for some reason I'd have to control it to be in the socially accepted norms, I know from experience that my symptom severity (or at...
  17. Yan

    My experience with the vivosmart4

    I've been using Vivoactive 4 for 3 years and I find it fairly accurate when it comes to times and waking ups during sleep. I have a sensor from other company (forgot name) to put under mattress to record sleep, but that I found absolutely unusable. It records the whole time spent in bed as...
  18. Yan

    Involuntary movements: Seizures, tremors, tics, twitches, myoclonus

    When I was more severe I too did have something similar for about 12 months. And I found it very difficult to explain. Violent whole body twitches but felt that it started from certain body parts. Often caused from external stimuli. Loud sudden noise would cause exaggerated startled reaction...
  19. Yan

    News from Japan

    3 weeks old local news documentary from Toyama prefecture which follows the daily life of a 30 year old man suffering from Long Covid for 2 years. It also shows background from the early days of the Covid-19 pandemic, then tells about the societal pressure to get better and back to work/school...
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