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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...

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...

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...

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...

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...

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.

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

Really enjoyed your interview @Trish. Your responses were thoughtful, considered and considerate – just like your posts here on the forum. Same goes for @Gary Burgess. Thanks to both of you.

Interested to hear the views of the science-literate members on this one. Patent application is for a product containing oxalic acid and derivatives, of all things. Certainly different. Reminder for all you test-it-on-yourselfers: too much oxalic acid is highly toxic and there have been...

Very impressive performance with all the courage and endurance of a true champion @Emsho, and brilliantly supported by Janet and Chris. Thanks to you all. You looked exhausted towards the end, Emma, so look after yourself. Hope the knowledge of all our appreciation for your heroic efforts will...