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  1. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    I put it into this thread for the same reason @Subtropical Island points out, it's primarily of local interest. But I don't have any strong feelings about it so feel free to copy to a new thread if you think that would be best. Just to be sure, I reread the email I received and the introductory...
  2. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    This post concerns those of you living in the Southern District Health Board area. The SDHB is developing a Disability Strategy and are doing an online survey during February. It's a short survey and a good opportunity to increase awareness of the needs of invisible disabilities like ours...
  3. Ravn

    Journal of Pediatric Psychology: Gender Bias in Pediatric Pain Assessment

    Correct. Did wonders for my street cred as a tough kid though ;)
  4. Ravn

    Trial By Error: Some Thoughts About an Upcoming Article

    Dear journalist - yes, you: the one who put those questions to Dr David Tuller and Prof Vincent Racaniello, you the journalist who's now reading ME forums looking for further material - I don't know you so I'm prepared to give you the benefit of the doubt. From reading this thread you will have...
  5. Ravn

    Diagnostic lab tests - ideal list for medical care guide

    That looks a bit thin, especially for an initial work-up when alternative diagnoses need to be excluded. Not surprised though, our Health Boards are all about saving money. Reminds me of an incident a few years ago. My doctor decided to test my Vit D levels because 1) at the time it was thought...
  6. Ravn

    Australia’s NHMRC ME/CFS Advisory Committee draft report released for public consultation

    Impressive work @Michiel Tack! :thumbup: Still working on my own submission. Being limited to 15min/day, max, combined with poor memory of what I read/thought the previous session makes it a challenge. But I will get there! Probably close to deadline. And without (m)any references. Just want...
  7. Ravn

    Does your ME cause problems with falling asleep at night at a normal time? (Without sleep meds)

    Overexertion always causes trouble falling asleep. When not overexerted I cycle through periods of weeks to months when I don't have major troubles, and periods when I do. Have never worked out why.
  8. Ravn

    Sources of online information for medical professionals

    I agree. Did you see this thread? A quick scan of the posts indicates many people here are not happy with that website, and certainly not with the Reverse Therapy stuff. https://www.s4me.info/threads/patient-the-latest-thinking-on-chronic-fatigue-syndrome.7322/#post-130865
  9. Ravn

    The Conversation: VO₂max: the gold standard for measuring fitness explained

    Mostly an article by sports scientists exhorting us all – well, maybe not us specifically – to exercise more. However, the article mentions an interesting working hypothesis (no published papers on this that I could find, not looking very hard though). Bolding mine...
  10. Ravn

    Journal of Pediatric Psychology: Gender Bias in Pediatric Pain Assessment

    Gender Bias in Pediatric Pain Assessment https://academic.oup.com/jpepsy/advance-article-abstract/doi/10.1093/jpepsy/jsy104/5273626?redirectedFrom=fulltext Journal of Pediatric Psychology, jsy104, https://doi.org/10.1093/jpepsy/jsy104 Brian D Earp et al, Published: 04 January 2019 (Paywall)...
  11. Ravn

    Does your ME cause sleep inversion?

    Opposite for me, I always seem to be waking up out of a dream, no matter how many times a night I wake up. The dreams themselves are just normal though, no more vivid or anything.
  12. Ravn

    Does your ME cause sleep inversion?

    Yeah, I was wondering about that, too. I used to be completely impervious to motion sickness, not any more. The interesting thing is that the very mechanisms the sleep study hypothesises cause the benefits of rocking to healthy people's sleep are the same mechanisms thought to cause motion...
  13. Ravn

    Does your ME cause sleep inversion?

    Maybe we should all try to sleep in a hammock, or a fancy automated rocking bed once they become more widely available (the latter most likely only an option for millionaires). I did use to sleep particularly well on trains, back in the days I could still travel... See this small study on...
  14. Ravn

    Does your ME cause sleep inversion?

    I had complete sleep inversion for about 6 months at one stage. Supremely infuriating! Attacked it with 3 things: Light therapy early in the day. Melatonin in the evening and at night. Rest, rest, rest. I don't know which, if any, of the above made the difference but eventually my body clock...
  15. Ravn

    Frontiers: The Super-Donor Phenomenon in Fecal Microbiota Transplantation

    This may at least partly explain the patchy results in FMT trials: not all poo is created equal. Science Alert article: There Are People Amongst Us Whose 'Super Poop' Can Treat Serious Diseases...
  16. Ravn

    Haemochromatosis: 'Most common' genetic disorder test call

    Ferritin can be temporarily raised due to other reasons such as inflammation so a single elevated test rarely rings any alarm bells unless it's totally off the scale high. Usually they just retest a bit later and if that test is fine there's unlikely to be a problem. Wow, that doctor was on to...
  17. Ravn

    Article: Men and women remember pain differently

    From the press release: https://mcgill.ca/newsroom/channels/news/men-and-women-remember-pain-differently-293050 Based on this article: Male-Specific Conditioned Pain Hypersensitivity in Mice and Humans Loren J. Martin et al, Published: January 10, 2019...
  18. Ravn

    Why are the majority of pwME rarely mentioned?

    Interesting reflections @Sly Saint! Had to think about that. My first reaction as a housebounder was that it's us at the severe end who get ignored, and that the mild and moderate ones get most of the attention. Then I realised that my view was based on my own experience of being unable to...
  19. Ravn

    Haemochromatosis: 'Most common' genetic disorder test call

    In New Zealand – different countries have different rules – if you only have haemochromatosis but are otherwise healthy your blood can be used as a blood donation. At the time of my haemochromatosis diagnosis I was still (wrongly) thought to have MS, so my blood was originally rejected because...
  20. Ravn

    Haemochromatosis: 'Most common' genetic disorder test call

    Especially since it's cheap and easy to do a basic screen. Most people here should have been tested for iron levels because uncontrolled haemochromatosis is one of the conditions that should be excluded before making an ME/CFS diagnosis. But if your doctor hasn't done at least a standard iron...
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