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I don't know of any specific research, but as sensory sensitivity occurs in many illnesses – all the way from life-threatening conditions to hangovers and colds – might it be difficult to characterise it specifically in ME? (I don't actually know the answer, that's just the first thing that...

It depends on whether it meets specific descriptors, I guess. I don't think the descriptors are a useful way of assessing disability, but they are what we're stuck with at the moment. For instance, I have to use a device to help with my medication, as I've previously taken overdoses of tramadol...

I also wonder if they pick their battles. If your application shows how well you know and understand the descriptors, and you can demonstrate clearly how you meet them, you're also more likely to be able to challenge an adverse decision. I don't know whether or not this is true, but I spent...

I agree. I've had vestibular problems all my life, and they are tiring – but it's not the same as fatigue. You also learn to manage them, even as a small child. Nowadays, due to adaptation and avoidance of triggers, the only time I have significant problems is when travelling (Phenergan helps...

I've been hesitating to comment, as I feel so lacking in knowledge, but does the 'sickness behaviour' response come into this anywhere? ME has always felt to me like having a virus, the varying levels of severity representing different points in the arc of the immune response. I can only...

...and children, when their ME symptoms are doubted by doctors. I suspect it might be another one of those things that'll turn out to be more complicated than it looked at first sight, though – that's usually what happens! :rolleyes:

If it's anything like EU arts funding, people will actively avoid applying! It's a shame, there have been some brilliant arts projects with genuinely radical thinking, but if you're not part of a large organisation, the bureaucracy just isn't manageable. I once got £5k for a project – a tiny...

Some of my thoughts in response to the article have already been elucidated, but my main worry is for children and young people being looked after by families – and doctors – who don't know much about severe ME. We have to remember that sick children can't advocate well for themselves, and that...

@wigglethemouse, doesn't the same thing apply re. schizophrenia and donations to the Biobank as with severe ME? I have two schoolfriends who developed it whilst in higher education in the late 1970s; both still live difficult and sometimes chaotic lives, with periods of significant illness...

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...