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Sorry if someone else has mentioned this but didn't he also literally tell someone (can't remember who), that he thought PACE was shit before he got converted by the psych lot?

I am a really big fan of this podcast but I went into the Long COVID episode with some trepidation, however the Erin's did a great job. I listened to the M.E. one this morning and it was really well done, from the perspective of people who are totally new to the subject. I suspect their...

All I can offer is my experience rather than advice but about a year ago I was gifted a secondhand 1-2 person Instant Air Fryer and it is brilliant for me. Everything that I used to grill/roast/fry can be done in this machine for half the time and cost in electricity compared to before. It...

This is very frustrating as I am not that far away, relatively speaking, but it's far enough there's no way I could get there. I worry that these sorts of studies won't include enough of the severe spectrum patients who could quite possibly give the most meaningful results. Not a criticism of...

Snap @Trish I had set aside this afternoon to finally get it done and was exasperated by the difficulty in finding the full documents I needed to read. I didn't have the capacity to give full answers, and even if I could their word limit was very tight! I missed some of the excellent points...

You have summed up my experience too, I've had the pay version for a couple of months and whilst it is a lot for me to spend on my budget I have found it quite useful. It has shown me that there are days when my heart rate lowers properly when I rest so I feel more confident to do little jobs...

They want to hear from patients who have recovered? I recovered after a 3 year bout of mild/moderate M.E., by resting as necessary and not challenging my body until it apparently healed itself. I was well for 7 years and then had a nasty relapse and am in my 7th year of moderate/severe. Do...

@Kiwipom I can't offer any big brain knowledge but can offer experience of taking low dose beta-blockers. I was initially on 10mg of propranolol tid but found that to have too many gastro side effects, I now take 10mg every morning and occasionally a second dose later in the day. I wouldn't say...

Just watched the film and fully agree with everything you said.

I got bought this washable electric blanket as a birthday present and it's been wonderful. Very quick to heat up and comfortable to use. It's incredibly cosy both as an extra bed layer and when lounging.

This is very similar to my experience with the illness too.

Because of my veterinary training these severe GI cases always make me think of Grass Sickness/Equine Dysautonomia and wonder if there is any overlap in pathogenesis. I don't think the suspected causal agent in horses, (C.botulinum) is the culprit but the mechanism of gut shutdown could be...

That's a great idea, I'll do that too. Thanks.

I have now had mixed results from the app, the pace score often says I'm having a better day than I am. But it's in beta and the devs say they are going to adjust the algorithm to improve this as they get more information so I'm going to stick with it for now I think.

I've been using the app for a week or so, (the first 4 days readings calibrate it to you), and it has accurately picked up a crash I'm having from building work going on in my house. I woke up a few days ago feeling awful and it said (paraphrasing) you feel awful! It actually told me my pace...

I've signed up to the app today, initially it looks promising, a fairly gentle tracking system and HRV measurement. I really hope it is as useful as it seems. I doubt I'll be able to afford to sign up to the wearable though.

I had the Pfizer bivalent vaccine in the UK, (West Yorkshire), 4 days ago. It's the first Pfizer one I've had out of 4, (2 X Astra-Zeneca and 1 X Moderna), and I had a very sore arm and mild fever symptoms for about 36 hrs after. I feel back to 'normal' now. It was made very clear masks were...

This is very interesting in that she is directly contradicting the BPS explanation of Long COVID in her thread, not something she's ever done with M.E. I wonder if there'll be any private whispers in her ear...

I took pyridostigmine starting at a low dose, eventually titrating up to 90mg tid. It had no discernible effect on my POTS or energy levels. I stopped taking it at the high dose because of gastrointestinal effects and it lowered my heart rate more than I was happy with, (into the 50's). I...

I was wondering if it meets the standard of libel, but like you said, it would require NICE to pursue it...