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Indeed, and if you are working by things like Heart rate and input into phone apps which is then aggregated across large numbers then the privacy and intrusiveness is more tackle-able (you need to know less about the individual intricacies on an outlier as it skews data less etc) and you don't...

Agreed I think we have to get our head around the fact that if someone using good methodology (Workwell, physiosforME have shown much better indicators of this) isn't setting standards of how these things should be measured, and how such results should be interpreted (ie not lumping and dumping...

Well said, they need to sort out a good vocab desperately. Baseline even in the context it is used 'right' for ME is actually the complete opposite of its usual meaning in every other walk of life. You are supposed to go nowhere near it, rather than progress from.. I'm one of the worst for...

As a side question to all that your point about "be careful about referring to mild": I've seen it written here that the mild, moderate etc might be better described in 'stages'. I can see the benefit of this for these types of comms, I can also see the important of it in lobbying for/changing...

Good point - I read it differently. One thing would be that it would give 'official back-up' to some pretty outrageous to others claims of how long we need to rest completely in order to recover from a short chat or an argument or a small activity. Or bigger ones, and make it easier to say 'no'...

Agreed. Although of course the issue with local groups is the energy-limiting nature of the condition combined with lack of support meaning there are few with it, or who care for someone with it who have any spare bandwidth whatever the severity vs the significant demands of such a group. We...

We have an issue where subject-areas need to be open-minded that just because their expertise is the key to unravelling the issue, it doesn't always mean the answer will be a treatment that is their usual 'wheelhouse'. e.g. the person who finds that exercise harms due to PEM needs to get their...

This bunch is brilliant. I'd like to put on their agenda that I'd hope they might use their techniques and approach and curiosity to look into rest: ie the 'healing' part. I think insufficient rest for me is even more brutal in impact than the exertion in the first place. And the rest is...

He is right. This is precisely what is needed - better measures meaning that research 'gets to the right point'. And for the condition to be explained in terms of 'baseline' - that is our 'disability' and the limitations we need to communicate and have understood by others around us. Most I...

Indeed and agreed -an 'act normal' focus over its impact on actual health, short term pat on back for Crawley getting presenteeism as a sausage-machine approach vs looking at the child's short, medium and long term prospects on decision-making. Manage them as 'a problem' (recovery = them...

Picking out this quote you mentioned from a specialist medical professional: "“It's often school that's the issue because I see so many [children] not recovering within a year, and as soon as they've done their GCSEs, there's a sudden, they start getting better.” (S2-MP14)" A big point to note...

I can see ways in which it could be - imagine being off work with something you need to rest to recover from; that's hard to do and not stress unless said work can reassure you it will still be there or whatever. ME can come as a shock, and it can be insidious - taking the textbook off the...

Was about to say the same: "Liaison between healthcare and schools is important for recovery from ME/CFS." is the big red flag. If they can't update their terms, and start using better and more appropriate definitions for this then it puts everything else into charade territory. As that is the...

Thank you. It makes sense as a back-up for when you've run out of cognitive ability and 'given it a go' in good faith in a non-emergency setting and does a better job of saying 'no thanks' effectively than you might if caught on the hop and out of energy. The last thing anyone would want is to...

The thing is that these are both correct. That is a scary and inappropriate situation to exist. Most healthy people could not accept a situation where emergency care came with such risks you might be better off not going. And this is people who are seriously ill - and potentially misdiagnosed...

Agreed - I'm not sure that is what was in place in Cornwall, or on what basis but my probable misreading of it inspired me a bit. And it is 'those hospitals' (ie all but some are particularly worrying) where I think putting responsibility for 'knowing' and 'logging that they know' if they have...

I remember reading a Job Description (might have been historical) for Cornwall (ironic given I'm not sure what that ME/CFS clinic is like currently). It had as part of the description of the clinic that one part of the role for those in the ME/CFS dept was 'outreach' within the hospital. I...

I think the splitting of the spectrum was the most important move BPS did. Mild they call invisible but really it’s ‘don’t acknowledge’ the symptoms from certain things as they ‘aren’t that bad to be obvious’ - people got away with that for years when I was moderate even tho I know that they...

Personally, I think we need to be lobbying for something that is 'in the system' - a safety officer (someone mentioned Ryan's law in Australia) who has different obligations and ergo isn't under the hierarchy pressure and has some weight, as the interim. I struggle to see how a vulnerable...

I know little about this, but that still sounds low as a minimum to me. At least it is 12 higher than the women I guess. How does that reference range 'operate' in reality? Is it 'as long as person feels fine and it is within this, we are OK' or is it 'even if the person feels awful if it is...