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I agree that 'malaise' isn't a great term because no one understands what it means, but 'disability' isn't a symptom - it's vague and nonspecific. Also, I'm already disabled without PEM. 'Post-exertion symptom complex' or 'post-exertion symptom exacerbation', maybe, but I'm not sure that...

Someone contacted my sister about a BBC Radio 4 programme within the last couple of weeks ago that mentioned a 'more accurate' test for Lyme that's available in Germany, I think (and wanted my sister to mention it to me, since this friend knew that Lyme can be mistaken for ME). Anybody know...

Please look after yourself, @Gary Burgess, and make that a priority rather than the podcast. I think most of us here have made the mistake of pushing ourselves too hard and it's not always possible to recover from it in the long term.

Is the idea to stay on a ketogenic diet in the long-term? I'm surprised no one has measured its safety beyond 24 weeks (that's not what I would call 'long term', especially if people are on it for years).

But if it's run by people who are politically aware, then just asking the question so that they become aware of the issue (and it's on record that they were) could be a good thing. Even if they don't answer questions, it might change their future behaviour behind the scenes.

Note the mention of tinnitus as a possible indicator of a spinal fluid leak in Cort's latest blog about the Dysautonomia conference: https://www.healthrising.org/blog/2018/07/21/dysautonomia-conference-cerebral-spinal-fluid-leak-pots-me-cfs-fibromyalgia/

Part II (haven't read it yet): https://www.healthrising.org/blog/2018/07/21/dysautonomia-conference-cerebral-spinal-fluid-leak-pots-me-cfs-fibromyalgia/ (I don't know about anybody else, but I'm unable to see the page in its normal format.)

I can understand being short on time and energy. I hope that some of the comments on this thread will be helpful. (Sorry for my short reply to your long post - having a bit of a rough day!)

Looks like it! :)

I think I just heard on the radio that cardiologists study cardigans.

I can understand wanting to come at the data with no preconceptions but having done so, there's every reason to look at what others have done in order to see if someone has already reported the same findings; has mentioned such findings but has critiqued them with arguments that you haven't...

Peter, if the idea is to appear to be independent and your analyses corroborate those of others, you have no way of proving that you didn't look at others' research. Sceptics will not be convinced by your simply saying that you didn't look. (I'm not questioning your word but am pointing out that...

I take your point but I think that what's needed is something that can detect whether something is horizontal, regardless of heart-rate and movement.

I haven't been following this thread, but wondered if the topic was what Jen Brea was tweeting about yesterday:

Someone seems to have invented this for horses and it only cost $80! https://thehorse.com/111609/device-for-studying-horses-lying-down-behavior-tested/

That's odd, for a finger-ring. It shouldn't know whether you're horizontal. I'm not sure I'd trust it! :)

Probably the wrong subforum for this, but for those of us with orthostatic intolerance, it would be good to have a wearable device that you could attach to your trunk that would measure how much of the day you spent horizontal. And it would be great for clinical trials of OI treatments...

It looks as though my googling has been inadequate, along with my reading of the literature! But we're still left with the fact that (according to survey data) most PWME have OI, and that it's a potentially treatable symptom. Shouldn't any OI patient be investigated to get to the bottom (if...

That's good to hear. I agree it's a difficult area. People can have negative tilt-test results and yet have all the symptoms of OI, and in the US, I gather that people like Peter Rowe would treat them regardless. But NICE appears to have some guidance for orthostatic hypotension (or at least...

Hi Peter - it's 'orthostatic intolerance'.