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  1. Subtropical Island

    Safe Cell Phone for severe patient

    The iphone equivalent is Night Shift ( in settings under display)
  2. Subtropical Island

    Safe Cell Phone for severe patient

    There are more people seeking out old school phones so i’d expect that they might be better for simple screens but it all depends on what sort of interaction works best for him? Text? Call? NB sometimes the answer is to try email - less immediacy can be a good thing and the range of devices is...
  3. Subtropical Island

    Keeping Up Appearances - How to look good while feeling ill

    I can’t help but imagine your skin is rather lovely - you’ll have had to take such good care of it over a lifetime. (My skin doesn’t burn as easily as it used to. I’m told it’s damage but it does make life a little easier too.) I forgot to mention: i don’t go out in the midday sun. I simply...
  4. Subtropical Island

    Keeping Up Appearances - How to look good while feeling ill

    I stick to hats, long sleeved collared cotton shirts, and wrinkles. I do wish i’d found one that worked for me tho. Maybe i need to go full zinc oxide in shea butter…
  5. Subtropical Island

    Does anyone use/have a parcel box for deliveries?

    Sorry, I’m no help there. It’s a fibreglass box we repurposed from something quite specialised. It even has ventilation slats. But there are a lot of plastic boxes sold so I imagine one would work for you. I must admit, it like that ours is more solid than that as plastic breaks down in UV...
  6. Subtropical Island

    Does anyone use/have a parcel box for deliveries?

    We have a parcel box. It’s not locked but it looks like it would be. For the first few times it was 50/50 whether they put it in the box but now they do. We even have a ‘flag’ that we’ve asked them (a note inside the lid of the box) to put up when they’ve delivered something so we can look out...
  7. Subtropical Island

    A thought experiment

    phenylephrine as a nasal decongestant. Looks like your green toe pill needs the FDA. I agree with your analogy pointing out that a therapy really does need as much rigour as a pill.
  8. Subtropical Island

    News from Aotearoa/New Zealand and the Pacific Islands

    Is there a transcript or slideshow version? (I’m very interested to understand this topic better and I just can’t manage to listen to this)
  9. Subtropical Island

    Bayesian statistics improves biological interpretability of metabolomics data from human cohorts, 2023, Brydges, Che, Lipkin and Fiehn

    Did they look at / adjust for when in any female patients’ menstrual cycle samples were taken? (ETA: this might be a dumb question. I’m only asking because I recall that prostaglandin is related (some kind of feedback thing?) to progesterone which oscillates through the menstrual cycle - causal...
  10. Subtropical Island

    Noise cancelling headphones! Oh Joy! (and other ways to block sound)

    I have some Sony headphones, bought in 2016/17, which make a huge difference for me. I can’t compare them with anything else (apart from earplugs) because I never tried anything else (these were a loan that turned into a gift) tho. The warm ears thing really is a bit of a bother …but without a...
  11. Subtropical Island

    Has anyone else here struggled with a persistent verruca?

    Yes. Had the vanishing after a good summer of sand and saltwater thing, was gone for a longish time but all back. It’s just one more thing to get around to mentioning again to do other (but too many things higher on the list) hope yours just goes, as they’re really supposed to. and sympathies...
  12. Subtropical Island

    New Zealand: HealthInfo ME/CFS pages - feedback please before 25 May 2022

    “ It must last six months in adults and three months in children.” Needs “at least” between ‘last’ and ‘six’. (I noticed the same problem on health navigator today - suggesting to the uninitiated that ME/CFS tends to be a six month illness) I realised after I wrote this that we are now in...
  13. Subtropical Island

    Recovery from Exercise in Persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 2023, Moore, Hanson et al

    Wanted to know what the SSS contained (Symptom severity scale): “To quantitate PEM, we chose the Specific Symptom Severity questionnaire (SSS) [9]. This questionnaire has nine domains, using a combination of 10-point Likert and visual analog scales for each domain. The nine domains are fatigue...
  14. Subtropical Island

    Long Covid in the media and social media 2022

    If this means: ‘reduce wait times so people get medical help right when they need it’ then great:thumbsup:. If it means ‘sick people need to get better faster’ or worse ‘all sick people need to get back to work within a deadline’ then :banghead::(
  15. Subtropical Island

    From academic success to cognitive disability

    I’ve spent a lot of time with this too. The need to adapt and to develop the new skills suitable for my current capacity is …well, for me and for most like us, to make progress of some sort is what life is all about. (To the point where not having that makes life seem not worth living.) The...
  16. Subtropical Island

    Famous people diagnosed with neurological diseases

    That’s grim.:( Would be nice if people registering these names took a bit more time and thought.
  17. Subtropical Island

    Long Covid in the media and social media 2022

    https://www.cepr.net/report/understanding-and-addressing-long-covid/ I just found this by accident. Can’t see if anyone else has posted it. Quick skim shows they refer to ME/CFS and suggest a range of risk minimisation and resilience strategies. Nothing earth shattering but seems to actually...
  18. Subtropical Island

    Suggestions for research using CPET

    I’d happily take a CPET that brought on PEM. I think there are a lot of us who have triggered PEM many times for much smaller reasons than the potential to actually find something treatable about this disease. The idea that I can avoid PEM in my life is a lovely one but not realistic due to many...
  19. Subtropical Island

    Suggestions for research using CPET

    NZ has a long history in shoestring research in other fields than medicine coming up with useful results. There’s a great deal that can be done with educating volunteers, self administration with postal or courier delivery, instructional videos and zoom type sessions, etc etc. I’d love to think...
  20. Subtropical Island

    Suggestions for research using CPET

    I thought this when I first got sick. Wore a tomtom touch for 2-3yrs in hopes my doctor might want to look at the data. Nope. (Obviously, that would just have been anecdotal in studying ME/CFS. But I always think people will want data. I would. Much prefer data to having to report things. So...
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