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@TigerLilea has spotted something I didn't: the steroid spray. These make me crash very badly within 24 hours of starting them, and have been the cause of all the periods of severe ME that I've experienced. To begin with, I didn't connect the crashes with the spray. I wasn't always in great...

I think so too. I'm reasonably lucky in 'only' having tree pollen allergy, so the season runs from March to the end of May; after that the symptoms tail off. The onset does always knock me for six, though, and feel very like a crash or a nasty virus.

I think one of the ways we can help raise money for ME, even if we have very little income ourselves, is to promote the efforts of those who're doing eye-catching fundraising drives. For instance, I've invited people in my social media groups to donate to ME charities before, and had little...

Thanks!

...made with minced lamb (hence the shepherd bit). If it contains minced beef, it's cottage pie. Can you tell that my mother was a school cook? :rofl:

Bit off-topic, but I'd be interested to know which tracker you're using, and whether it's the tracker's own app or some kind of add-on that's analysing the data. I've got a basic Fitbit, which I chose simply because it has no external metal parts at all but still tracks heart rate. What I've...

This is exciting, and crucial, research. Given that we have both the ICC criteria and recent work on characterising PEM, I think it'll be possible to design a screening tool that will rule out at least some people with other conditions or who have fatigue but not PEM.

I've had tinnitus since before I developed ME (too many live gigs in the 70s – Cabaret Voltaire basically play 24/7 in my head!) It only varies if I have a cold, labyrinthitis, or after swimming when my ears are still full of water. I'd never connected it with ME, I didn't realise it was common...

I agree, I'm inclined to think it's a coincidence. Both joint laxity and ME occur in my maternal family; however, so does red hair, bradycardia, psoriasis/psoriatic arthritis, inherited neuropathies, and above-average height. It seems no more logical to link the ME with the hypermobility than it...

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...