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The Spinoff (17/1/21): Some advice for ‘long Covid’ sufferers, from the chronic fatigue community Nothing new here, much as the title says, but a delightful gremlin with a sense of humour has snuck in: If you're the writer and you're reading this, please don't change it, some typos deserve to...

Terry's nails lunulas disappeared except for on thumbs but those are slowly shrinking now, too mild vertical ridges occasionally Beau's lines on one or two fingers which grow out again prone to white spots on fingernails (leukonychia, more likely trauma than mineral deficiency) not fingernails...

A while ago I did a trial of 3 devices to measure sleep, wearing all 3 at the same time: 1) a Fitbit wrist monitor (quite an old one, probably one of the first to monitor sleep at all) 2) a Polar wrist monitor (about 2 years old) 3) an Oura ring (latest version) I was interested in seeing if...

Otago Daily Times (14/1/21): Post-viral illness thrust centre stage Nothing new here, just a quite sensible opinion piece looking at the similarities between long Covid and ME and at the differences in how they're being treated or, in the case of ME, have been treated/maligned/ignored. Still...

Since the editors of this Long Covid page seem to have a reasonably good understanding of ME I went looking to see what Physiopedia had on ME/CFS. Lets put it this way: let's hope none of their tens of thousands of followers find this page any time soon. If there are any physiotherapists or...

I expect there's vigilant monitoring of side effects going on but 1) are they also being categorised and analysed to see if there are certain side effects turning up more frequently in certain groups, be that age or disease like autoimmunity? 2) since it's not likely all groups were well...

New (at least to me) biomedical researchers always welcome! Muscle wasting? In the bedbound, sure. Though whether it's a consequence of the disease or of being immobile is another question. But in general, beyond what you'd expect from being sedentary, is muscle wasting a thing in ME? My own...

I think they focus on diagnostic categories because this looks to be a review aimed at physiotherapists wanting to make practical treatment decisions based on evidence. It's very reasonable to suspect that people with and without PEM may react differently to some treatments and therefore to look...

This underlines the value of good, open-minded clinician researchers who also happen to see a representative group of patients. I fear they're an uncommon species, at least in ME. Some of our clinician researchers have some rather fixed ideas. Others may be open-minded but probably see a...

This seems to be where we're at with ME: the fatigue meme. How exactly did they do this? I could find plenty of praise for them online for doing so but very little on how they did it. And how could their methods be adapted to ME? Or would that not be possible because with ME we still have less...

Just alerting Australians to this post in the News from NZ thread. The conference is largely an Australian thing. More at original post News from New Zealand and the Pacific Islands

For the Big Ideas Forum: http://www.chfsummit.com.au/ehome/518286/bigideasforum/ But there are several "panel discussions with live Q & A" after the various live streams, for registered participants only presumably. Not sure how I feel about the term consumer in this context but apart from...

I want to scream yes, yes and YES!!! in response to every single one of these sentences but will restrain myself to one word in capitals. Is this something that could be done through one of the more sensible charities, in collaboration with S4ME? They've done those big surveys on harm from...

Yeah, the choice of the term "severe" here is unfortunate and creates unnecessary confusion. There's plenty enough confusion around what "severe" actually means as it is. No need to add to it. It's perfectly sensible to separate a group which only meets Fukuda from a group which also meets...

It was just about the number of criteria met, based on past studies having found patients who meet stricter criteria usually are more severe than patients who only meet Fukuda. They didn't describe how severe their severe group was. Though you could go through the tables and check the results...

Gosh, I wish more ME studies would consider PEM in this much detail and relate PEM findings with overall symptom picture! This study asks about: PEM after physical vs mental exertion how long after exertion it starts (since we still don't know if the immediate and delayed symptom exacerbation...

I thought this was a missed opportunity together with there not being a split analysis of the ME/CFS (mostly Fukuda) group with respect to PEM. Would the not-recovered-but-not-quite-ME/CFS group have looked the same as a Fukuda-without-PEM group? And a Fukuda-with-PEM group may have looked...

Videos have been posted (most are in German, some of the English ones have a German voice-over, at least at the start, haven't watched any through): https://www.youtube.com/channel/UC8eFBrwILKRmbLgvtVxXAFg Prusty's is here (English):

Actually, this may not have the expected effect. I tried that phrase out on some friends and a few of them interpreted it as positive. As in "I was living this horribly rushed and stressed life and then the illness gave me a chance to turn my life around and now I'm so much happier". Aargh!

Come to think of it, I rarely even try these days because it is so difficult to do it succinctly. What I do say when I try is, let's say, highly colloquial. I agree, especially for a general audience. Plus, all the other, longer descriptions are packed with abstract words. Most people, the more...