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Yep, same reason people who wear hard contact lenses need to make sure no tap water ever splashes into their soaking solution.

Some might, if they were forewarned. I decline depression questionnaires if they're nothing to do with the issue, but only since I realised they can be misused. One occasion was during referral to a specialist. The questionnaire was on the GP's computer screen, and she was going to record my...

The list of blog posts makes it look like an extended row that revolves around identity politics and gender issues. They seem to be arguing from deeply entrenched positions. The blogs are too long for me to read, it would need more work than my eyes can manage to figure out what's actually...

Bear in mind, though, that if you're laughing, coughing, yawning, preparing to sneeze, or slightly out of breath, you will breathe in through your mouth. We probably do this more than we think. That's how I got it (at least twice, possibly three times). There's a lot of craic and laughter and I...

@Binkie4, you could look at community transport/Dial-a-Ride schemes for some trips? I used to use our service a lot, including for work, before I got my van. It was like booking a taxi (except you had to do it at least two or three days ahead), and the fares were affordable because they were...

But they want to involve people living with it. They can't assume their experience is the same, or that their priorities will be the same as pw ME/CFS. People with Long Covid haven't lived through PACEgate either, so they may have different relationships with or views of the profession. (Second...

If the Society is trying to do much the same as for ME/CFS then it should be a good thing. Their members may well be able to help and support some people. Ironically, I think psychologists who understand ME and LC could potentially be helpful to people really struggling with pacing, e.g...

I got one prescribed by my GP some years back. However, secondhand chairs that suited me better were quite affordable with mobility allowance, so in the end I preferred to pick my own. My GP understood that people who need a vehicle and a powered wheelchair can only lease one or the other via...

Apparently the charity was built from the ground up by an individual. But you couldn't replicate it for ME, it hasn't got the fundraising potential. Presumably the NHS knows the importance of specialist nurses, though, otherwise there wouldn't be so many of them. Much of the care a former...

It strikes me that what people with ME/CFS most desperately need is basic services. One idea that has come up is ME-trained nurses, who could be very helpful to severely affected people. Some of them have little or no access to NHS services (including routine preventative screenings) because...

Patients need to wise up to scams like this.

Just realised I misunderstood the point of the thread—I'm really sorry! I thought it was about talking to another individual about ME. I have a virus at the moment, so my brain fog's even worse than usual. Ignore all the stuff about what I say to people I meet, it's not relevant at all to...

He'll be in his 80s, so probably retired from most work by now.

I read that as a warning that people contacted in the current wave of notices (i.e., September) could have particular difficulties if they don't apply for UC in time, as their ESA payments will stop around Christmas. As far as I know the migration process is continuing, so people will be...

I think we can. I tell people my truth as I know it, which is that it's hard to live with and puts big limitations on what I can do. At some point I might add the bit I left out, which is that there's no treatment either. I don't say much more because I'm usually with other people to do...

I quite often have to do this. I usually tell them I have a painful chronic illness that means it takes a day or two to recover from everything I do, and that's why I can never say yes to things happening on consecutive days. I can't go much further in general conversation, and I only tell them...

I suppose we'll never know how many people fail to claim because their migration notice was in a batch posted at a Special Letterbox*, so they had no idea their award was due to end. * A 1970s technology that shreds the contents for hamster bedding†, for anyone not in the UK. † People here...

The only thing that immediately comes to mind is that it'll be much harder to be distracted from VR than it is from a video. Healthcare professionals will be used to having multiple demands on their time and attention, and watching a video clip on a workaday computer might be the sort of thing...

I'm sure they are. They can wave a big flag saying "We're there for ME!" knowing that not many people read the small print.

So if it turns out we need to look for signalling molecules that aren't easy to measure, researchers have at least two problems: working out how to measure them, then working out what the ranges are in healthy people? (There are probably a lot more problems, specially if a minor illness could...