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    Built Me/Cfs safe room in the bush at the back of a house. Design help/suggestions.

    I believe shipping containers are not usually safe to live in due to the paint https://universal-containers.com/news/are-shipping-containers-safe-to-live-in/
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    Physical activity levels in ME/chronic fatigue syndrome before and after a 2-day cardiopulmonary exercise test protocol, 2026, Receno

    Sorry to derail a bit - is there some kind of standardized way of these % reductions? It has never made any sense to me what it means.
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    News from The Netherlands

    http://www.cpb.nl/publicatie/het-effect-van-covid-19-infecties-op-het-arbeidsaanbod-en Might be worth its own thread but im unsure
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    Miscellaneous Research Thread

    https://www.nature.com/articles/s41598-026-35389-6
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    There aren’t any answers, we are looking for them and will support you until we find them

    Maybe asking for change as opposed to "help"? My mind instantly went to financial help, this being used as a slogan and asking for money by some charity.
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    Shared autonomic phenotype of long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, 2026, Novak, Systrom+

    I was expecting SFN to be high, but not that high!
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    Why are children and young people more likely to recover from ME/CFS than adults?

    Everyone seems to claim this but I never saw a study properly studying if it is the case. Do we have anything??
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    Chills and feeling cold

    I sleep under 3 or 4 blankets and have a heated pad underneath. My body does not heat itself up enough it seems, especially at night and during PEM...
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    Do you feel worse, better or the same when you wake compared to when you went to sleep?

    I think its a misunderstanding of how a lot of symptoms are described as "fatigue", and people don't always understand the difference between sleepiness and fatigue. It does make sense to me that PEM shouldn't be something that just resolves after a good night of sleep, which is different...
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    Do you feel worse, better or the same when you wake compared to when you went to sleep?

    Depends if I have PEM or not. If I am not in PEM, I often feel a little better or the same when I wake up, and my symptoms slowly get worse throughout the day. During PEM its the opposite. Edit, it also highly depends on whether I went to sleep and woke up at natural times or not. I need to go...
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    Large-scale investigation confirms TRPM3 ion channel dysfunction in ME/CFS, 2025, Marshall-Gradisnik et al

    Do you think it is intentional? Or is it just difficult/unusual to avoid this, thus likely to be an accident. It all sounded quite interesting!
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    Large-scale investigation confirms TRPM3 ion channel dysfunction in ME/CFS, 2025, Marshall-Gradisnik et al

    https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2025.1703924/full
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    Assessing DSM-5 criteria of somatic symptom disorder in medically hospitalized inpatients: A cross-sectional analysis 2026 Schaefert et al

    They cannot comprehend that symptoms that will not immediately kill you, or are obviously visible can still be impactful or even disabling. Thus, any invisible chronic illness, even if diagnosed and explained, is somehow caused by being dramatic. Cus why would you feel distressed if your pain...
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    A thread to share your experiences of orthostatic intolerance - problems being upright.

    Im mostly disabled by my muscular pain/fatigue/weakness, sitting up hasn't caused big problems recently but standing is mostly difficult because of pain. My OI is most noticable when I lay down, its like I can feel my blood go back up and fill up the inside of my skull. Sometimes I get a...
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    Trial Report Clinical Improvements Following a Non-Aerobic Therapeutic Exercise in Women with Long COVID, 2025, Miana et al

    Amazing! You put my thoughts into words.
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    Trial Report Clinical Improvements Following a Non-Aerobic Therapeutic Exercise in Women with Long COVID, 2025, Miana et al

    So they walked more overall, but had more days where they walked less then 10 minutes? Does the time spent walking only include days where they walked more then 10 minutes?
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    Why is showering so PEM/OI inducing

    I am moderate, but showering isn't a big problem if I can rest my head and back against something & have my legs elevated. if my legs aren't elevated my heart rate will be in 120s. It decreases my headaches and muscle pain.
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    Microneurography Reveals Unmyelinated Small Nerve Fiber Dysfunction in Long COVID, 2025, Ribeiro et al.

    any updates? This study got shared on reddit yesterday
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    [...] online patient education program for children and young people with ME/CFS and their parents within the BAYNET FOR MECFS Study, 2025, Keicher+

    It doesn't sound like this is horrible at all, at least not nearly as what I expected. I thought I was about to read a FITNET 2.0. Sounds like they had support sessions together with other patients and some plain readable information, I can totally see how that can be helpful. Personally I...
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    [...] online patient education program for children and young people with ME/CFS and their parents within the BAYNET FOR MECFS Study, 2025, Keicher+

    Do we know something about the MoDuS thing?
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