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I only know because it was explained to me during my (very late) diagnosis for high functioning autism! It would be impossible for most people to elucidate these sensations themselves, specially when they're in the middle of them with a tired, foggy brain. I always knew I had a malfunctioning...

Not everyone with sensory integration issues is autistic. Essentially, if your proprioceptive sense doesn't work well, your brain has trouble working out where your body and limbs are in space. For instance, when I'm awake, my toes twitch every few seconds – my GP thought it was some kind of...

If you're relying on the proprioceptor effect that helps overstimulation in autistic people, the weight only needs to be on major joints such as the hips or shoulders. I'm autistic and sometimes need weight to switch off my brain, but I have a heavy sandbag that I pull over my hips (I'm not...

GenoME? I'd quite like not to have CFS in whatever the name is, even if it has to go in the strap line to clarify for newer patients. Given the number of ME groups on social media, plus all the Facebook-based welfare advice groups who'd likely be willing to signpost it for their clients, plus...

Sorry you're feeling so crap – I hope it improves soon. To be honest, I buy whatever's on sale at the time. My latest are from MyProtein, called Essential BCAA, and I take the dose suggested on the bottle. They're not a cure for pushing too hard, but for me they reliably reduce the symptoms of...

I find the information hard to interpret too, as it requires an understanding of biochemistry that I lack entirely. But I think this sentence is important (my bolding): Reductions in the purine metabolite, hypoxanthine, were also found in the serum metabolomes of the females in first morning...

@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!