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I just googled and couldn't find a trial (which isn't to say that there isn't one). Waist-high compression stockings (of the type used for OI) are so incredibly difficult to get on that I'd be amazed if anyone kept wearing them without being convinced that they were helping them keep upright. I...

One of the treatments for OI that some people (not me) find useful is graduated pressure stockings, often with abdominal binding. I thought that splanchic pooling had been directly observed in some way in research but maybe I'm wrong. Doesn't this indicate that there's a problem with blood...

It's a big topic, Binkie! I've tried lots of treatments and none have made any difference. Here are some good resources: https://www.dinet.org/ https://www.dysautonomiainternational.org/ You might want to start with this: https://www.dysautonomiainternational.org/pdf/RoweOIsummary.pdf

BTW, I have to go and lie down now! :(

I don't know enough to debate the value of tilt test but there is a certain amount of autonomic testing that can be done for OI apart from that, in order to try to find out what flavour of OI you have and to point to possible suitable treatments. So I think it's worth knowing that this is a...

I think you're missing my point now! Our fatiguability means we feel bad doing anything. I think it takes extra indications to show that we specifically have a problem with standing. If our only problem with standing is due to our general fatiguability it's surely not clinically interesting and...

I may well have lost the plot here but my starting point was that you said that if PWME had OI, we'd know. My point is that my symptoms and behaviours clearly point to OI (regardless of the tilt test) and yet I didn't know I had it because unless you know the symptoms of OI, they're hard to...

Fair enough, but loads of authoritative people say that POTS is a kind of OI, such as the Cleveland Clinic and Peter Rowe, who says: The medical term “orthostatic” is defined as relating to, or caused by, an upright or standing posture. Orthostatic intolerance, then, is an umbrella term for...

I do have fatiguability in any posture, but I also have OI, as demonstrated by a positive tilt test, and have been prescribed various interventions for it by both my GP and a cardiologist. I also had shown the behaviours that point to OI, such as sitting with my feet up and crossing my legs and...

@Jonathan Edwards - I'd add that the ME charities did (and still do) emphasise POTS and always talk about dizzyness on standing in connection with it. Without dizzyness, a lot of patients will think, as I did, that they don't have POTS and therefore don't have OI either. It takes some studying...

Because it's not clear that it's being vertical that's the problem. For decades I thought it was a problem with simply getting tired quickly, because maintaining a vertical posture involves using more energy than lying flat because you have to engage your muscles. I also get tired if I'm lying...

I know, but according to the literature it also incorporates difficulty not just being standing, but being anything other than flat. That's what makes it hard to realise you have it. I have not only difficulty standing, but also difficulty walking, and difficulty sitting with my feet on the...

I knew I had difficulty standing up but I also had difficulty doing anything that involved expending energy. So someone would have had to have given me a questionnaire in order to reveal the problem as one of OI but it never occurred to me to ask for one or to report the symptom to my GP, just...

Actually, I didn't realise for years that I had OI - I thought I was just too tired to stay upright.

Can someone let them know?

Is there any indication of whether the talks will be posted online later?

Is that actually in the document? They seem to have left an "un" off the front.

I'm confused by that graph: Why aren't PWME's heart rates going about 60 bpm? I thought our problem was struggling to keep our HRs below our aerobic (or something) thresholds?

For anyone who wants to complain to the BBC if they feel that the BBC was biased in allowing Sharpe to present his claims about his research with no one with the expertise to challenge his view properly - such as David Tuller, Jo Edwards, Carolyn Wilshire, Carol Monaghan, etc., the BBC tell you...

@Simon M - see above.