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  1. forestglip

    Protocol Comparing effectiveness of physiotherapy vs drug management on fatigue, physical functioning, and episodic disability for [ME] in [PCC]... 2024 Sarker

    Holy cow, that's a lot of drugs. There's no way, right? I feel like this has to be poor wording choice. Edit: I assume the "and" is supposed to be "or". And that the physician will decide which to prescribe.
  2. forestglip

    Using deconditioned people as controls

    Studies controlling for deconditioning or other confounders Got it started. Not super easy finding studies to add. The one I added so far compares two studies testing muscle acidosis after exercise - one in ME/CFS, one in primary biliary cirrhosis, a condition they say causes a similar level of...
  3. forestglip

    Using deconditioned people as controls

    I'm thinking it might be a good idea to add to MEpedia a page which is a repository of ME/CFS studies which had deconditioned controls. This would be a reference of data which has applied another level of due diligence that it truly applies to ME/CFS, and one could have more confidence that it's...
  4. forestglip

    Modern environmental factors

    Yeah, that'd be great if that was reality. There's also the potential for subtypes that are permanently switched on though. I imagine it might be possible that something like a stroke permanently destroying a part of the brain could cause an ME/CFS-like illness.
  5. forestglip

    Protocol Comparing effectiveness of physiotherapy vs drug management on fatigue, physical functioning, and episodic disability for [ME] in [PCC]... 2024 Sarker

    I think it might be the second because they say this - they expect people to experience PESE during the study.
  6. forestglip

    Modern environmental factors

    I admittedly didn't do much digging to verify it, but this video posted by World ME Alliance a few days ago which says there are an estimated 55 million pwME: Though their own website says more like half that number.
  7. forestglip

    Resources on why the Name “CFS” is problematic and “ME” or “ME/CFS” is recommended.

    What's the issue with SEID? Seems to fit better than the other two.
  8. forestglip

    Resources on why the Name “CFS” is problematic and “ME” or “ME/CFS” is recommended.

    Yeah, I didn't read it carefully. It seems to have hallucinated the "placeholder" reason as that's not in the cited source.
  9. forestglip

    Resources on why the Name “CFS” is problematic and “ME” or “ME/CFS” is recommended.

    Wikipedia has a short summary in the Naming section: Or if you're okay with just sending them what an AI said, I think this came out decent, and it also provided some references that might have something good:
  10. forestglip

    Modern environmental factors

    Thanks, will check it out when I have more energy! Link to the referenced talk (starts at 17:25)
  11. forestglip

    Modern environmental factors

    The previous map was from 2022. I found CDC Long COVID Household Pulse Survey, which is done around monthly, up to last month. These aren't exactly beautifully uniform between months. Flipping through months, I can't visually see any regions or states that are consistent. March 5, 2024 - April...
  12. forestglip

    Review Interdisciplinary, collaborative D-A-CH consensus statement concerning the diagnostic and treatment of ME/CFS, 2024, Hoffmann et al [German]

    It at least includes all the author institutions: Link to full computer translated article
  13. forestglip

    Modern environmental factors

    Yes, that does make sense, thanks.
  14. forestglip

    Modern environmental factors

    This all makes sense and I'm pretty much out of energy to comment on anything, but thank you for your input. Though just to reply to the "temporary remission" part: I've also had "temporary remission" from adderall. Relatedly, anyone with depression can get temporary remission with MDMA. Can...
  15. forestglip

    Poll: What is your most disabling symptom?

    Cognitive impairment probably. At least if it was only physical fatigue, I could still do online classes, do remote work, or have conversations longer than a few sentences.
  16. forestglip

    Modern environmental factors

    All good points, thank you.
  17. forestglip

    Modern environmental factors

    That's true, I'd love to see more research in this area as well.
  18. forestglip

    Modern environmental factors

    I don't know why you would call this disinformation. Was anything in the chatbot's reply inaccurate or even misleading? It's not a source of hard evidence, I was using it to generate hypotheses. That's true, I couldn't find any direct evidence of medical organizations recommending to avoid...
  19. forestglip

    Modern environmental factors

    That's if we know what environmental factors to look for. It might vary by exposure to industrial chemicals, which might not necessarily be obvious in location data. Maybe around half of most every region, every city, every neighborhood in the country by chance happens to use some specific...
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