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are they claiming as for ME/CFS that it is all about them caring about the pwme and not the recipient issue?

Here is the other thing along the lines of agreement and informed consent. CBT was supposed to be an add-on (that wasn't needed to be in the guidelines, just like all other illnesses would have that option) for if comorbidities were present. Yet it, and underlying beliefs about things like GET...

Thank you for raising this. Clarity is required in order that what might have been the correct intention isn't distorted into something quite different. Particularly when it is being done by a service itself (rather than eg GP signing off needs/adjustments for other provider to provide) and...

Without the correct methodology then no. The issue for ME / CFS being as vulnerable as it is has always been due to the fact that we can 'do' but then it causes deterioration. But in a very different way to those who are ill with certain illness who talk about 'I'll pay for that later'. The...

Add in the additional problem that we've now all realised those of us who gave something a go as guinea pigs at least thought that what the outcome for us as individuals was would be written down accurately. Imagine how devastating it is to realise (probably due to coercion or fear in the...

It is very naughty too if they are actually using care / activity For ME/CFS those are polar opposites. The care plan that @Kitty describes is noting adjustments that people who are there to provide support need to make and be aware of. The idea that people need an activity plan, and that...

All of this is really disturbing to me. I have inadvertently seen it creep in, in layman's terms in language used in other areas albeit the individual isn't probably aware where it is coming from or the power of it. But it means I have to rise above, or try, even though it gives me the shivers...

Link to article: BACME: ME/CFS charities work with psychologising organisation (thecanary.co) I've picked out the following as the intro, but worth a read on the BACME discussion etc and other things (it isn't just about the charities). It also picks out some interesting overlaps and...

if we have an idea more specifically of what we think is needed /could be useful, then perhaps phrasing a question along those terms is the angle/starter for ten? or a potential one for the list to choose from

Agreed there are interesting aspects to this. I just don't know how this question can be asked at the same time as the others and it not leading to us not getting an answer to the other questions which potentially something can be done about at this stage. Because if it is worded as 'why was...

Agreed. I struggle for words that will get this across to others with the right nuance but there are certain positions and certain aspects that will necessitate people having to focus on 'defending' whether it be a decision or themselves and so on. There are other questions or issues where the...

On that note. And maybe it is cloud-cuckoo land, but there is stuff we can do if we start actually thinking like this. The 'what's in it for me' question, but also the fact that people are given set timescales to complete research at whatever level and there are always easier and very hard...

And a lot of people will go to somewhere or someone with an intent of being quite 'transactional', they want something and they have a plan to get what they require and a plan - if they think it might come up - or just well-worn tactics of avoiding the 'giving' or 'giving away' or 'discussing'...

Of course what you are talking about is: ethics. There is genuine denial, which I don't doubt is also the case. And then there is also 'don't expect me to care', not my fight, 'so what'. A lot of people just don't have ethics. Unless they know they will be caught and it will make a difference to...

I've copied the following quote from David Tuller's interview with George Monbiot, Trial By Error: Guardian Columnist George Monbiot Discusses His Scathing Rebuke of the Biopsychosocial Brigades--Text Version | Virology Blog because I think it actually applied to a note I was thinking of for...

Biographical repair from the same people who keep the foot on the neck via misinformation that means we live in epistemic injustice where everyone at best thinks we are fatigued? and maybe doing mindfulness or all these additional exertions will be useful? to quote three men and a little...

:hug::banghead: I don't know anything about whether what I'm about to say is nonsense because I'm only quoting a few I know but this sounds more like what might work for people wiht fibromyalgia, some of whom say they need to 'do some movement' etc and it sounds pretty different to the now...

agreed. I've years ago having slept through alarm for something extremely important often found that I'd managed to sleep with my actual ear on said phone alarm. And as we all know they don't turn off for a bit unless you snooze them. Particularly when the tiredness had cumulatively 'built up'...

But it is what bleach is? This is what is used to bleach hair. It can bleach teeth. It will bleach clothes if it drops on them etc. It smells of bleach even when it is a very weak solution in a mouthwash As there are warnings for example about using too much too often even as a mouthwash then...

I agree with other people on swallowing hydrogen peroxide - it is not something I'd ever think to do based on what I know of it. Some mouthwashes for where you eg have gum disease have hydrogen peroxide (and taste blinking horrendous but needs must) I will admit that when I've had a...