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I’m feeling exasperated by trying to manage different aspects of ME/POTS diet. I mostly benefit from low carb/high protein but also have trouble with fibre. Last night I had too much fibre and was awake a lot with IBS style symptoms. Today I ate mostly carbs in response and now I’m awake hungry...

So if there’s a concern it triggers a review process? But we’re already in a review process so we can’t ask for that.

Has anyone been able to read the full pdf?

@Ryan31337 I love the idea of automated home cinema. That’s giving me expensive ideas for the bedroom renovations! I hadn’t thought about automated electric blanket. You’d need one either designed for it or with a physical on switch which can be left on. It could be linked via a smart plug to...

I think you misunderstood what I meant. I mean involving completely different conditions, not ME. When has NICE acted on these safeguarding caveats in the past? Then, if we find examples, how do these compare? It might be that they’ve never actually responded to safeguarding issues in this way...

I’ve just written a blog post about Smart Home technology and chronic illness life https://tipsforme.wordpress.com/2018/02/26/smart-home/ Has anyone else here been exploring this?

Can we find any examples? What level of evidence has been required in the past for them to take this action?

Is there any precedent of NICE adding a note to guidelines or withdrawing treatment before the end of a review?

@arewenearlythereyet oh that’s interesting I’ve been addicted to hazelnut and cacao porridge this week!

I’m coming out of the crash now and it’s actually quite a nice, cozy, sleepy fatigue. I’m now sleeping a lot (mid crash I couldn’t sleep despite exhaustion). I have pain in my joints, probably due to sleeping position or similar, but generally the feeling of inflammation has gone. I don’t mind...

From https://www.meaction.net/2018/02/20/members-of-parliament-hear-about-flaws-of-pace-trial/

Firstly if your MP attended yesterday it’s definitely worth thanking them.

I’m not clear what it is ok to say about this, but UK ME charities were already having these discussions before yesterday. There should be another debate but sometimes there is a short window (eg a week) between hearing a debate is going to happen and it happening. This obviously isn’t great...

For some reason the link I initially added doesn’t work. Try http://www.cmj.org/article.asp?issn=0366-6999;year=2018;volume=131;issue=4;spage=435;epage=439;aulast=Li

I had this in my inbox from ncbi no idea if this is important or credible. My brain won’t allow me to read the full article but the dots on the graphs look close to the line (it does look like this is a thing).

Increased Endogenous Sulfur Dioxide Involved in the Pathogenesis of Postural Tachycardia Syndrome in Children: A Case‐Control Study Hong‐Xia Li1, Xiao‐Chun Zheng1, Si‐Yao Chen2, Ying Liao1, Zhen‐Hui Han3, Pan Huang1, Chu‐Fan Sun1, Jia Liu1, Jing‐Yuan Song1, Chao‐Shu Tang4, Jun‐Bao Du1...

@arewenearlythereyet our experience sounds pretty similar

I’m currently crashing and I’m just curious about how you would describe your crashes/flares/PEM/bust phases? What does it feel like? (Bearing in mind I won’t be able to read long answers ;)) To me it feels like the top of my spine is inflamed and also the area which is likely my spleen. Light...

@Liv aka Mrs Sowester @erin thanks :blush: The Lindy Bop dress I’m wearing in the video I got for £3 on eBay and it’s the sort of dress you can wear all year with different things. I’d had about 4 years of basically existing in pyjamas and decided it was a good opportunity to get a completely...