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I experience this symptom too, very much as others have described. I can sustain it for several days, and if the amount of sleep is just right (which is difficult to gauge because it tends to change), I can do so for an extended period. I also feel at my best during the afternoon and evening –...

Do we even know whether hypermobility with subluxations/dislocations is a single condition? Or indeed, whether it's a condition we're born with, or something we have a tendency to develop due to a pathological process? It certainly runs in my family, but even after years of pondering, I'm...

Thankfully long gone now! I was lucky enough to have the early menopause that some women with ME seem to experience, so my endometriosis symptoms faded out 8 – 10 years sooner than expected. Hopefully they will find better treatments for it in the future, it blights too many lives.

'No further impact on functioning' is a strange finding. I'm from an extended family where most of the women had/have endometriosis, and most couldn't even get up from our beds on Day 1 without passing out. My ME has never caused pain on that scale, or bladder and bowel problems [from scar...

Lovely story, though it's a shame she had to do it that way. But it's still a pilgrimage, and she obviously got a lot out of it, so hey...you do what you can!

Feels as if we need to get the students of that august institution on our side. There must be someone whose partner or close family member is severely affected by ME, and therefore by the crap that Bristol puts out. Students are somewhat more openminded than senior academics on the whole...and...

Very interesting discussion! I also feel concerned about the level of hype over early-stage research, but I wonder if publishing now is a carefully calculated risk. We urgently need more funding and the involvement of more researchers; if publication in such a high-profile journal adds...

What I took from this part of the interview is that Ron Davis is trying to respond to what patients are telling him – some ME patients have serious and long-standing concerns that issues with mould or heavy metal toxicity could have triggered or worsened their disease. Many clinicians just...

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...