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Sounds interesting. I wonder how much the difference is the VR or just the quality of the underlying teaching materials?

Well put. I wonder if a push for reform rather the usual ‘give us more money’ message would actually be better received by ministers too.

It’s probably not that surprising in some ways. A lot of the ThereForME people are relatively new to this area. When I was first ill a decade ago I heard a little bit about the controversies but wasn’t well versed in the history, hadn’t experienced the impacts myself and have a lifetime of...

Can we get a grant to run a double blind randomised control trial into that?

This is really well put. I might add the inverse too. For example I sometimes get bad migraines I didn’t get before ME, but you know what, I don’t mind too much if the other symptoms I have are ok. The aura goes, I may have some nausea, I just give in to it and lie in a dark room for a while...

Pretty sure they do. I’ve seen pet activity monitors. And there seems to be a growing number of pets being prescribed antidepressants too…

For comparison I checked the last ongoing symptom tracking I did which was for a 6 month long HHV-6 study with the CureME team. It had a dozen single response questions on symptoms with two more on if you were feeling better/worse and if you’d changed your meds. That’s a really good point...

That’s a very good point, thanks for reinforcing it. I’d add that the problems people with ME generally have with NHS is not a lack of admin.

I stopped tracking symptoms. It was a lot of work. I learnt a bit but it’s easy to get too focussed on things. A little light weight monitoring may be useful but… For my condition/severity and I think for many, seeing how I am ‘over the last month’ is a pretty pointless metric. It’s a lot of...

This is what I was thinking. Are they verifying that the data is similar in structure or content to the data they got before? That it matches their subjective expectations? Or what? And how, with a different and self selective small sample from previous samples, do you do this? What is the...

I was interested that they’re only looking for a limited number (250) of surveys to be completed to check if the “revised version provides the robust data that we expect it to”. Is this normal practice? Will a small sample size allow them to verify? Do we know the criteria for verifying the...

This is the first time I’ve come across ‘Persistent Long Covid’ as a term. When people are prefixing an existing term with more synonyms, that seems like a bit of a red flag. What’s next? Unremitting persistent long covid? Chronic unremitting persistent long covid? Chronic unremitting...

Thanks @Sasha and for your looking for solutions. Certainly older people are dealt with differently I feel. I was in my 30s and looked like a fit healthy man. You don’t get much help until you collapse or just lie on the floor. Then people take notice but more in a ‘someone else should help him’...

Except if money is put in without those within the system giving up what they’ve been protecting and admitting they need to change, then nothing will improve either. And while I have a lot of sympathy for many within the NHS, even those I know and family working there know changes are needed...

I wish I knew. I’ve asked myself the same question many times, tried many things but failed. Sorry to not be more positive. When I was initially ill and in and out of hospital for appointments I tried to explain, asked for accommodations, but never managed to get any. Some of me was ‘well this...

It feels like we’re trying to solve two different problems with two different tests. One is to help with what has gone wrong within our bodies. The other is to help with what has gone wrong within the healthcare system. In an ideal world the latter could and should be fixed in more appropriate...

They seem to be referencing quite a wide range of studies into both animals and humans over a wide time period. No doubt there’s lots of differing criteria for people included in these studies, it would have perhaps been useful if they’d grouped the findings based upon these criteria as well as...

The only things I can think of that would put pressure on an organisation stonewalling are publicity and funding. So as others have suggested trying to get journalists involved, or contacting their funding and partner organisations, which given the predominance of government funding from the UK...

It’s a really good point. And while there are links between physical and emotional stress, cause and effect I think may get confused with respect to us. I like to think of it in the mechanical physics sense that any system under load will experience stress. And when the load exceeds capacity...

Sounds like it went well and you got the help you needed and wanted, great news. I’m really pleased for you @MrMagoo and thank you for updating the rest of us!