Search results

This might be too simplistic for what you've experienced, but the reason for my physical pain after noise sensitivity is that it makes me tense. It's not all voluntary tension; yes, of course my muscles tense up as a response to something painful, but even if I consciously relax, much of the...

I've found vagal stimulation genuinely helpful if I've accidentally overdone it and can't switch off at night, though. Resistance breathing (forcing air out whilst partly closing my nose with my fingers), or using a TENs machine (before I managed to tread on the wretched ear clip and snap it...

I haven't had the energy to read the paper properly yet...but realising I'm perhaps one of the few who'd recognise tripe when they see it made me feel very old! :rofl:

I donate to Invest in ME too. According to the last mail I got I've sent them about £40 over the last couple of years, at no additional cost to me – it might only be a small amount, but it's still better than a slap in the face with a wet haddock!

Other really good options for welfare advice are Fightback4Justice or Benefits & Work. Both ask for small donations/subscriptions, but only to cover their website and office costs – the advice is free. Fightback have several qualified lawyers on the team, so they know the caselaw back to front...

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...