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Thank you – I do get this, but don't need overnight care. (I'm also autistic, and would shift flipping mountains if it meant I didn't have to have anyone else in the house! :laugh:) It definitely meets the size standard for a spare room, as the houses on our independent living scheme were only...

Ah, okay – I can't make head nor tail of the award letters they send me! The recent one says they've awarded me a reduction of £989, but nothing about what the actual charge is for the year. A month later I get an email telling me what my monthly direct debit is, but not whether it's over 10...

Oh, that's good news! Mine's gone up, but only by £1 a month, so I can hardly complain. I live on a little social housing development in Band B, though, so I doubt I'd have been hit by a ceiling anyway. I do have to pay the bedroom tax for the tiny spare room where I keep my wheelchairs and...

None of these (including the newly-added one that came from my WGS) appear in my 23andMe data from 2017. ETA: the 'likely benign' rs72657698 does appear, but in my case is not genotyped.

As of a few days ago, there seemed to be plenty of surgical spirit available in the UK – I bought half a litre from Boots for about £4. I wouldn't use it as hand sanitiser, as it's safer for me to just wash them, but as I was in there anyway and my current bottle only has a bit left in it, I...

I only have one showing up on this gene, rs58668703, which is assessed as rare, clinically significant, and pathogenic. However, PXE is a recessive disease and my type's heterozygous, so whilst I might be a carrier, I don't have symptoms.

I haven't seen much written recently about the importance of hand drying, as well as washing. When my elderly mum was in hospital, they were very keen to stress the importance of this – damp hands can apparently spread many times the number of residual bacteria, viruses and spores than...

I received a survey from the Office for National Statistics yesterday, which I've just completed. They send them out fairly regularly, but this one was different in that the majority of the questions were about the epidemic. Most of it was 'no change' for me; I've cancelled one visit to family...

That's how I read it – I don't think they're directly comparing the conditions to each other, just giving a list of examples. Even severe ME is arguably unpredictable, in the sense that we don't know which patients will develop it or when. Some are very ill from the outset; some develop severe...

Me too, I've never heard anyone just say 'pem' to rhyme with 'them'. It'd be very unclear to anyone who wasn't completely keyed-in to discussions about ME, and even some experienced patients would probably struggle to comprehend it as part of a spoken sentence. At least if you spell it out, you...

They've suspended face-to-face assessments for the time being, so your payments should just continue until you're notified of new arrangements.

It'll surprise no-one that significant adverse outcomes can occur, but the severity is really worrying. I wonder whether these reports will affect the FMT research in Norwich.

It'd be so useful to find out what is being taught in medical schools on ME. Not to put the information into the public domain, of course – simply to let Nina know, so that she can factor it into her own education materials. She can probably guess to a large extent what approaches are being...

I woke up to his dulcet tones on Radio 4 this morning. He gets bloody everywhere!

I was lucky in never progressing that far. I was severely malnourished for about eight years – 5' 9" tall and I struggled even to keep up to seven stone – but of course as a teenager in the 1970s, no-one believed me that I didn't have anorexia nervosa. I'd never heard of gastroparesis at the...

Must admit I've only ever had IBS due to developing potato intolerance. For the first 40 years of the ME, there were no IBS symptoms at all; now I know that I need to avoid potato products, my digestion has returned to normal. I had gastroparesis when my ME first started, but after a while it...

I use something called Dermol 500, which has been a game changer – combining it with twice-daily Omega 3 means my hands look completely normal. Even with application of emollients every time I washed them, they used to look as if I'd just finished a three-month stint on a fishing boat in the...

I don't even use the pre-made stuff, as it (along with everything else that's not made for eczema sufferers) will begin to split the skin on my hands within 24 hours of starting using it. Probably somewhat counterproductive when it comes to excluding bugs...

On the question of funding: is there an organisation comparable to the AHRC that funds doctoral research? The arts has used AHRC funding to do some important work. For instance, I was involved in a five-year project where a teacher and director used her PhD programme to develop a framework for...

After spouting all this waffle about surviving the three-day week, I'll now 'fess up to the fact that our independent living co-ordinator knocked on the door on Friday to ask whether I had any plans to protect myself from the possible epidemic. "Umm, punk rock and witchcraft?" She laughed, and...