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That's reminded me that you can also go back and retrospectively change your scores in Visible - it reminded me because I often don't really know how a "crash" is defined and if I was having one, as opposed to the much more grey areas of PEM as it develops and disappears. So sometimes I would go...

This was one thing I did find useful with Visible (the paid version): you can set it to beep when your heart rate has been over a certain threshold for a certain amount of time. So it wouldn't beep for every single HR spike, which would just get annoying, but it would beep if I'd got into that...

I knew I'd seen the name Betsi Cadwaladr somewhere. From the ELAROS seminar: https://www.s4me.info/threads/the-elaros-nhs-digital-system-for-patient-clinician-digital-sharing-questionnaire-data-includes-yorkshire-rehab-scale-and-open-oh-app.39324/page-8#post-615069

I knew I'd seen the name Betsi Cadwaladr somewhere. From the ELAROS seminar: https://www.s4me.info/threads/the-elaros-nhs-digital-system-for-patient-clinician-digital-sharing-questionnaire-data-includes-yorkshire-rehab-scale-and-open-oh-app.39324/page-8#post-615069

The email is titled 'THANK YOU for choosing to fundraise for SequenceME!' and in the body of the email 'Thank you so much for choosing SequenceME as your cause' so I'm going to trust that that's good enough for now.

I selected Action for ME as the charity and was intending to email them to say it was for Sequence specifically, but then I got an email from them almost immediately saying 'thank you for fundraising for SequenceME'. Very efficient! They also suggested I could send them my 'fundraising story'...

Great idea - I've been really cheered by the response to mine. I can't read the whole text right now but just one thing from my experience: on the Justgiving website and on social media shares of your page, only the first bit of 'your story' shows up automatically and you have to click to...

My husband has posted it on Facebook. Very happy to have it shared on any platform. I'm only on Mastodon myself (all the others are a bit hectic for me!)

Thank you!

That's me. I'm delighted it's already over £1000 in less than 24 hours.

When you say flat, do you mean completely flat, head not propped up at all?

I will bet £10 that these "early" results will also be described as "promising".

Yes, absolutely - especially as these particular nerves aren't only involved in pain sensation (which these researchers are focusing on) but also, if I understand rightly, in regulating heart rate and blood pressure, respiration, digestion, and more.

I was getting interested in this until I read "In some cases, the relief lasted up to 48 hours." Oh well. Still:

I had this microneurography testing at KCH recently and the results are similar to what they found in this study ("ongoing spontaneous activity" and "extreme slowing of conduction velocities"). Without going into detail, partly for confidentiality and partly because I can't remember all the...

"We don't know if anything happened, but it was definitely very important."

What are they?

I noticed this blog post responding to Frith and had to smile at the following: There might be one other...

Yes, I'll need a bit of time to put it into words but I'll come back to this. The simplest way I can put it is that as a healthy autistic person I was energised by the things I enjoyed doing, physically or mentally, whereas with this illness any expenditure of energy knocks me out, whether it's...

Frith says "I think it’s useful to make clear distinctions between the different types of children who have been diagnosed as autistic", but when I think of the autistic children I know in real life, many of them don't fit into any of her 'clear' categories. There are those who are...