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I don't have problems sitting up unless I'm already crashed, but I really struggle with leaning forward to plant things in my raised beds. It's bizarre how much difference a relatively small change of position makes!

Me too, until I was finally diagnosed in my 50s! :laugh:

I found speech to text much more tiring than typing, specially as the applications seem to be trained mainly to understand American accents. (These are somewhat thin on the ground in the part of Yorkshire where I was born!) It takes so long to keep repeating the phrase until the software's...

Me too, I became ill at 17 but wasn't diagnosed until many years later. It didn't help that I'm autistic, and hadn't learned to talk with doctors very well (I lacked 'theory of mind' until well into my late 20s). I'm a renter living on benefits, but it's not the reason I stopped using a...

It's excellent news, isn't it – very encouraging. This is true, but so far no money has been available to spend on publicity, and I don't think GP practices or hospital clinics have been approached yet (it's too early to get them on board). I think if the team can utilise these channels, as...

Thanks for posting your experiences with it, @strategist – it's an interesting topic. I found liquid carnitine like amphetamine or something, causing shaking, dizziness, vastly increased orthostatic intolerance, and a wired brain. I can take so little without rapid side effects that it's not...

Gosh, that's quicker than I expected! Excellent – will keep everything crossed.

Yes! I was good at languages at school, but since becoming ill I've made concerted attempts to learn two. Nothing doing – I can neither grasp the grammar nor retain the vocabulary. :rolleyes:

True – I've never earned a lot and haven't had access to a company pension scheme since about 1983, but I did persuade my employer to make me redundant instead of cutting my hours by more than half (which is what they wanted to do). I even did the budget, pointing out that they could employ...

It's always good to review paperwork in your own time, before you get to the point where your hand is forced. Coming out of work is quite an emotional process, even if you know it's probably going to be the best decision you ever made! It's a big adjustment, which takes some time. I live alone...

Not really true in my case. I've recovered better function than before a couple of times, after a relapse forced me to rest for an extended period. The gains weren't enormous – and were almost certainly due to the rest – but they weren't a worsening. My function now is somewhat lower than it...

I'm so sorry you're at this stage – I've been through it, too (only without the insurance!) I've never had access to anything like that, but sometimes in these situations they may need your employer to agree first that you're not well enough to continue. It's worth at least being mentally...

Plenty of young people who've suffered harm through social media would tell you about it if you just asked them. And about things that might have helped when they were caught up in the worst of it. The RCP aren't ever going to be the experts here.

...and that collaboration includes recording properly how disabling the symptoms are. Patients' pain and suffering is quite bad enough, without being multiplied by not having enough medical evidence to get financial support when they find themselves completely unable to work.

Dunno, but can somebody tell me how to get a few hundred grand to test whether celery sticks dipped in mayonnaise or liquorice sticks dipped in rainbow kali work best for low back pain? It affects millions of people, and we need to find some solutions.

I get auditory hallucinations too. For instance, every time I run a tap, I hear and feel the vibrations from our old dial phone that used to shake the thin panel wall it was mounted on. (I haven't had a landline for more than 10 years! :laugh:) If a noise has previously been annoying you, I...

Absolutely. People without any obvious energy deficit would never pay money to test it, so it's impossible to get an accurate picture of what the normal range might be.

The medical profession SO MUCH needs to start offering career advancement to doctors prepared to say 'I don't know', instead of those who don't know but make something up without any evidence!

When we know the final total, I was planning to post a brief message saying how wonderful it is that XXXX people have signed up in such a short time – without making any reference at all to the tiny number of complainers!

I agree – you can't win. And if the study were funded, I'd wager some of these folk wouldn't be able to resist participating in the end anyway, instead of just grumbling about the lack of research.