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This has happened to me. Each time I went into remission I'd experienced a growing conviction that I could start doing things. I'd started the recovery process, and then become aware of it. And on a subjective level it can feel – quite strongly in some moments – as if it's a change of attitude...

Hopefully, being able to enlist the help of GPs and ME/CFS clinics when formal enrolment begins will help to boost the numbers. There must be patients who've never engaged with charities, groups, or online advocacy, or who have done in the past but drifted away because their health declined or...

Thanks so much for your excellent response, @Joan Crawford!

So I've had a reply, and it seems there isn't a missing page of questions. It apparently just assumes that people who say they receive benefits have difficulty paying for daily expenses, and asks what the reasons are. I decided to answer 'other' and enter text to say that the omission of more...

I've just tried to do the online survey, but there's a problem with it at the moment. The form jumps from questions numbered in the 30s into the 40s, and it's obvious from the context that there's something missing (I was asked at Q43 to state the reason I have difficulty paying for living...

Yup – and GPs are even worse! Aqueous cream is another thing my late mum was prescribed by the doctor, without any explanation at all about how to use it. When she mentioned to the pharmacist that her eczema wasn't getting any better, he asked whether she was putting more on her skin after...

I think it's also because allergies are so common, and for the most part are more a pain in the butt than a threat to health. It's possible for patients to fathom many of them out with trial and error, and if the reaction's not too serious, it may not even matter much whether something is an...

Yup – a proportion of disabled people are not ill, but there's a huge burden of chronic illness too. If you expect your population to work later and later into their lives, don't understand that a significant proportion have disabling illnesses (including those who would not even have survived...

I found out by accident some time ago that my award has been extended. I needed an up-to-date award letter to renew my Blue Badge, and when they sent it I noticed that the end date was nine months later than it had been. Today I actually got a notification of it. It's happened because they...

Absolutely – I think one of the most problematic things is what 'able to do' means. There's a perception among employers and personnel managers that the answer to this question is both concrete and permanent for most disabled people. Q: "Can you stand unaided?" A: "No, I'm paralysed from the...

I think it might be useful to find an additional measure when it comes to ME. I don't consider myself housebound at all, for instance, but I can't get out without a wheelchair and my number of hours out per week are very limited. One way of distinguishing between levels of severity might be to...

I'm not disagreeing with you – or anyone else for that matter – but my MP, and his very long-standing predecessor, would say exactly the same. Just swap the word 'citizen' for 'MP'. So much of the work and energy of a political party is focused on the drive to be seen to oppose other political...

Does this help, @Barry? It's one of several tables from the file. (I don't 'do' figures! :laugh:)

Just came to post it myself! I was (pleasantly) surprised that it focuses more on ME than LC.

It can happen with insect stings, so I'm guessing it is possible?

My only experience of hospices in the UK is providing respite care for people who have high levels of need but are not terminally ill. A couple of elderly relatives have benefitted from it whilst the children who cared from them took a holiday. One auntie said it was always a nice holiday for...

I meant to include a comment that it appeared to suggest that large numbers of people readmitted in a serious condition are being included in the Long Covid cohort...but I was over-tired, and forgot. :rolleyes: Having re-read the article this morning, it looks like two reports hashed together...

From The Guardian: Almost 30% of Covid patients in England readmitted to hospital after discharge – study [as yet unpublished] 'A total of 47,780 individuals who had a hospital episode between 1 January 2020 and 31 August 2020 with a primary diagnosis of Covid-19 were compared with a control...

Lane swimming = zero kids and zero noise! Beautifully antisocial, in fact, nobody stops for long enough to talk. There's a maximum of five in a lane, and most people use the right lane for their pace and will pause at the wall to let slightly faster swimmers pass. All very polite and organised...

It's a danger, but don't think we will get the full pictures for a long time. I and three friends, for instance, 'recovered' to over 85% of previous function for years at a time before relapse. The trigger illnesses were hepatitis, gastroenteritis, EBV, and possible EBV. Had a doctor been...