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I think I’m going to say it in every response at my next tribunal

Thresholds. You know like you pace so you don’t “overdo it” well we no longer need sessions with an OT telling us we’ve been overdoing things if we’re tired (silly us!) or reams of rehashed “how to pace” guides. The whole thing has been automated for us, giving a second by second account of how...

I have the new band which lasts a week on a charge. I agree the hrv daily score thing isn’t great, plus it’s being used now as some kind of authority on predicting crashes? It still pays for itself for me when I can whip it out to show exertion in real time.

I like having it, it’s a bit of a comfort blanket now. I’m looking forward to them rolling out the sleep monitoring. I’m still using Fitbit for that at the moment and I’d like to not have to buy a new one when its time is up.

A post on Reddit says that legal representation has been secured for the family.

Wow. Go Scotland!

Actually I’ve changed my mind. I think I want the app. I can think of nothing more worthwhile than regularly messaging questions and queries to the OT who is tasked with doing replies.

Will we be doing a full cultural appropriation trip then? Chuck in bit of yoga and mindfulness? Maybe some stoicism and Epicureanism?

I think the actual Mediterranean Diet includes white wine in low to moderate quantities. The benefits aren’t realised if you exclude the booze. This is my new push-back on it being shoved down my throat. My previous “but before I eat I don’t swim in the med, and after I don’t walk up any hills...

I believe it ties in with the new “neighbourhood hubs” of the NHS 10 year plan recently announced by Streeting. They haven’t been set up yet, so as per usual, don't hold your breath. Yes, our care will be from a service which was only invented last week.

I love this Jellybabykid. Can we use it? We could send this to our MPs, the APPG, the charities, the press? (Not identifying you, just all repeating your words)

God forbid that the needy, who need help, should get help when they ask for it, from those in a position to help.

“Lack of energy” to make/attend appointments seems really odd to me. Making an appointment isn’t that difficult, whereas getting an appointment is a different matter which, yes, I mentally and emotionally find hard. Not due to lack of energy as such, but that the energy cost is too great (aka...

I have since started saying”my carer can’t get here until afternoon” which makes a world of difference. It may be you who told me that trick!

I dunno, I once asked for an afternoon appointment at the GP and the receptionist said no. I requested as a reasonable adjustment under the equalise act and she told me “the duty dr says not being able to get out of bed until the afternoon isn’t actually a disability” hmm.

Could people just wear a wearable and the data be fed into a bot/python script? I’m just thinking about lessening the burden whilst maximising the data. Personally I’ve been struggling lately with the difference between being active but in pain and forcing myself, vs not being active but in...

Surely they don’t want ppl in hospital for 6+ months though? Getting them better and moved on is in their interest isn’t it? I’d have thought “long term ers” would be highlighted on reports, questions asked why they’re still there?

This is the second person in 2 days, why is this so difficult? I believe we are up against a dangerous intersection of poor nursing and care meets meh ME isn’t real/this isn’t ME

We need an NHS ME/CFS tzar. And the majority of interested applicants need not apply.