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Interesting – it's probably not that uncommon, especially after growth spurts, but we just stayed like that The men in the family don't seem to be affected, but one of them did produce a 6' daughter who's also a fainter/faller. I'm a shortie at 5' 9"; my grandmother, born in the 1880s, was 6'...

I've just visited the web form page, but at the moment my brain can only produce the answers 'Money' and 'Diagnostic Test' to the questions. Accurate, but not helpful! :banghead: I'll keep thinking.

My experience of OI, just for fun: nearly all the women in my maternal family were 'fainters' from an early age, though only two developed ME. Coping strategies I learned as I grew up included always keeping coins in your pocket to drop if you felt dizzy in a queue, as an excuse to get down on...

This letter about patient-centred health research was published in The Lancet yesterday. Might there be useful points that could be raised with NIH...

Forgive me if this isn't part of the NIH's remit (I'm from the UK), but are there training/development opportunities here too? For instance, funding organisations often seem to spread their hands and say they'd like to receive more high-quality applications for research money, suggesting...

Ensure that null results are published?

Drifting off-topic, but I wonder whether this type of EDS can sometimes occur as a developmental disorder that requires at least two factors: genetic predisposition (which could include a variety of genetic profiles), plus a precipitating event? This would complicate the picture considerably for...

A friend was diagnosed with cancer some years ago (thankfully recovered now). Her GP immediately said that she should let her employer know she wouldn't be able to work for 12 months. "In reality, it's more likely to be a couple of years because of the surgeries and chemo, but let's not frighten...

It sounds a bit like a coursework module to me, whose aim is more for the benefit of students than it is patients. I don't agree that studies make an implicit assumption that symptoms don't change over time, either; it's been understood for a long time that in mild to moderate patients, it's...

Thanks for this – I can't read any posts at all on Facebook. It seems to have developed digital ME lately, and it's having one of its 'No posts to show' afternoons. :banghead:

Fightback4Justice certainly know the relevant caselaw very well, they have legally qualified advocates and an excellent success rate at appeals and tribunals. They have two services – a VIP platform, where you pay a monthly subscription, and free support through a private Facebook group, which...

I agree with a great deal of what's been said here, and want to second my thanks for raising it. I'm not really sure how to move it forward, though. I decided to try laying out a questionnaire about specific symptoms, including some that aren't really typical of ME (in my case, at least). It's...