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  1. Ravn

    Blog Africa Clockwise: M.E. Too or Why I am No Longer NOT Speaking to Doctors about Chronic Illness

    Totally agree. An excellent and wide-ranging piece by a writer who's been ill for more than 25 years. Thoughtful and well written. Very long but can easily be read in sections due to its structure: A brief snapshot of the writer's life at a given time. A brief description of an encounter, at...
  2. Ravn

    News from Scandinavia

    Excellent and sensitive writing by journalist Erik Haldan – a shame not all of his articles can be google-translated, they're well worth reading. Good on the newspaper Ugeavisen Esbjerg for giving so much column space to the issue, repeatedly and over a long period of time. Only one complaint...
  3. Ravn

    Palpitations

    Just to be sure it's not some serious or easily treated cardiac issue you may want to get this checked out by a doctor. While you're there you could ask about some of the medications used in POTS like beta-blockers or florinef. Some people find them good for reducing palpitations. I get the...
  4. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    Yes. Fortunately it looks like nobody in my circle listens to National Radio in the afternoons, at least this time round I didn't get a flood of well-meaning but unhelpful texts and emails asking have you tried this or that? But I always worry about the newly-diagnosed or less well-informed...
  5. Ravn

    Solve ME/CFS Initiative - Editorial: PEM. It's time to Retire the Term

    Good point. This actually may be a more important issue than the word malaise, however annoying that word is and it is annoying. But arguably the bigger problem is the confusion caused by the word exertional. Why? Because for our human brains prone to taking (faulty) shortcuts, exertional is...
  6. Ravn

    Objective measures of our health and symptoms we can do at home.

    I use the following: Heart rate monitor: for resting HR: The standard recommendation is to take RHR first thing in the morning but that doesn't work for me; my HR upon waking is extremely erratic and random and probably most linked to how recently I turned over in bed. So I take RHR...
  7. Ravn

    News from Scandinavia

    A recent thread by @Andy sparked off this post: https://www.s4me.info/threads/open-letter-74-international-experts-urge-dutch-minister-of-health-to-make-substantial-long-term-investment-in-biomedical-research.5031/ Was skimming through the signatures in the open letter linked to in the above...
  8. Ravn

    News from Scandinavia

    This morning I received an email notification of the upcoming publication of a Danish book with the very suspicious title : “Rehabiliteringspsykologi” (edited book, long list of contributors unknown to me). https://unipress.dk/udgivelser/r/rehabiliteringspsykologi/ There is no way to preview...
  9. Ravn

    Dr Oaklander SFNP video - Small Fibers, Big Pain

    The definition of 'idiopathic' alone makes this worth a watch. :rofl: Also extremely informative especially if you have any suggestion of any sort of neuropathy or fibro.
  10. Ravn

    Help ! Hypoglycemia coming back with a vengeance

    NZ. So London a teensy bit impractical. Also live way out in the wop wops with even basic medical care at quite a distance. Nearest I'll ever get to having my hypos sorted is the HbA1c and a fasting glucose (both fine) and the 'helpful' advice to eat something if I'm feeling woozy. Let's just...
  11. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    Article in a small, local (I think, not my region) North Island newspaper: https://www.theweekendsun.co.nz/news/4395-burning-candle-at-both-ends.html Bit of a mixed bag, here's a sample: Pointing readers to this website for more information: https://ccisupport.org.nz/ which also seems a bit of...
  12. Ravn

    Help ! Hypoglycemia coming back with a vengeance

    Excellent informative video @Ryan31337. Thanks for posting. Found this document which contains many of the slides used in the video, only an easier size to read: http://www.potsuk.org/UserFiles/File/Prof_Q_Aziz_Gut_and_PoTS.pdf Would be very interested to hear how you get on with your...
  13. Ravn

    David Systrom, researcher, Brigham and Women's Hospital, USA

    HealthRising has a number of blog posts on David Systrom (just search for Systrom). That's where I first stumbled across his idea that pyridostigmine could be potentially helpful so decided to experiment especially since I also have POTS and symptoms suggestive of small-fibre neuropathy (though...
  14. Ravn

    Help ! Hypoglycemia coming back with a vengeance

    Some very interesting posts @Ryan31337. Do you happen to have any research or other links regarding connections between POTS/dysautonomia, gastric dysmotility and/or glucose dysregulation? Have just recently been speculating about possible connections there myself. Was diagnosed some years...
  15. Ravn

    Help ! Hypoglycemia coming back with a vengeance

    My glucose levels go haywire during PEM, both too high and too low, whereas at baseline my glucose is pretty stable. So yes, it's possible yours could be linked to crashing @Dechi. Have you considered investing in a glucose meter? They're not too expensive though the cost of test strips varies...
  16. Ravn

    Member comments wanted: Third section (What the guideline will cover) of the NICE ME/CFS guidelines draft scope

    There needs to be clarification how to handle conflicts between the existing guidelines for various conditions and ME/CFS guidelines. Highly likely existing guidelines like the “Common mental health problems” would recommend management strategies unsuitable in ME/CFS. {my Italics} This is good...
  17. Ravn

    Member comments wanted: First section (Why the guideline is needed) of the NICE ME/CFS guidelines draft scope

    Agree with the previous comments. The text itself actually contains an excellent argument for taking the focus off fatigue: the fatigue focus is a major contributor to misdiagnosis. If the focus was on PEM instead, most of the patients referred to in the text likely would not have been...
  18. Ravn

    News from Scandinavia

    To “celebrate” the release of the new Danish recommendation, here are several more Danish articles to raise your blood pressure further. All start out reasonable enough. Patients really are ill. They are not imagining things. They shouldn't be bounced from doctor to doctor. Etc etc - all fair...
  19. Ravn

    News from Aotearoa/New Zealand and the Pacific Islands

    From an announcement by the Community Health Council (CHC) - which covers the Southern District Health Board area, I don't know if other areas have similar initiatives. Not ME-specific but there may be an opportunity here for some input? Some of the stories can be seen here, all are short...
  20. Ravn

    Jen Brea $100,000 crowdfund for 2018 #MEAction activities

    There really should be a limit to how many serious health problems one person has to suffer! Wishing you a speedy and complication-free recovery from your operation @JenB. A couple of thoughts for when you're back on deck on the Indiegogo, to consider for any future campaigns. I had a good...
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