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Yes. So you can see how the initial incarnation vs the additional amends takes it less and less from whyever it was signed off. But I get the staffing changes notes too. It is interesting to hear Action for ME said something / changed their mind and backing ? I’m intrigued given the current...

Sounds like the chimp felt the task was to complete the puzzle and then they would get the reward, whereas the child had been put in a different 'task' which undoubtedly included social pressures/coercion/behavioural psychology and so knew they also had to factor in the risk of 'displeasing'...

Wow, you can see where their move towards 'fatigue' being their big thing they realised they could 'own' and make as lowest common denominator / black box as possible over the years as a 'school' basing its papers on manifestos and a focus on lobbying to ever weaken methodology 'robustness' (if...

:)

and of course your scale. Before you get ME/CFS you don't know fatigue can go higher than that time you ... and in fact I'm not sure that those who haven't had it or something similar would even think to equate 'being very ill' with 'fatigue' ie do most 'norms' use 'that time I had...

Yep this is just a long anecdote exampling how there are some who still don't/won't get that there is another definition of 'can't' .. which is that arrogance that has made us all very ill by people spreading misinformation about it ... which is that when we force ourselves we can indeed hurt...

Another classic: "It is important that you practise walking with the nurses to and from the toilet/bathroom where possible, to get you back into your normal daily routine. This will help to build your strength and confidence." Doesn't sound like it is based on much more than some 'judgement'...

I've found this elsewhere for post-op for something else. I think there is more going on and don't really know from the phrase 'research' whether there is anything even evidencing that properly. There is a belief-system issue potentially just in 'belief-systems know best'. As we know, this sort...

truth is I think there are probably a lot of others it doesn’t work for who are just more able to walk away and not have to say anything, it’s just the coercion issue used on CFS means we’ve been the poor so and sos they got obsessed with because they had to say it

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...