Search results

It was put with these people 'to develop' and 'deliver' back then because at the time clearly the aim was to develop a psychosomatic guideline I know we get lots of arguments about can’t say ‘definitely biomed’ etc but the guideline at least debunked that behavioural worked and after decades...

Another weird flaw of the pain catastrophising ‘move’ is that in its proper definition some who has the proper catastrophising (subset of depression and very different and horrible bound thinking if you see it) they will find the Beck scale or measure of it the most accurate. so you can’t...

That last one really helps I don’t get how it didn’t move forward and we are where we are because people were looking for and aware of the issue of methods that only did correlation with no attempt at understanding causation of that - and from what I’ve seen Rona miss Morris is one of the...

Great you are doing this. It’s a yes, yes to this important persistent problem being flagged. And for me/cfs never more important as we will have to push post guideline for the inaccurate stuff to get properly repaired - like new versions calibrating any of these mental health concepts are...

:rofl:

I like the idea of inputting into/helping with advice on the actual method for making sure input ‘heard’ is properly representative and qualified if it’s along the lines of the PPI discussion on other forum. agree with caution in general and I’d hope they’d understand

Creepy they are right wth another one for the journos looking for scandals - although I think it would be better with this to connect it with the ‘functional’ initiatives/sell ‘in general’ too because the more you think of realise it’s not ‘just’ x symptoms the less justifiable and more...

To be fair that PROMS survey is so long that if they had to print it off a few times for proof checking and spellcheck it would cost a fortune in ink and paper ?

Or if you do see then two years on tell yourself ‘bless ‘em they must have metaphorically fallen off the wagon and relapsed’ and in their mind they think mental health without their positive input so they can pity the person and said person is too exhausted to enforce that long dotted line from...

Agree - I think , and I don’t know what it is (not just a campaign ) , getting it understood that the methodology issues underlying these areas are the big issue is key and using that term isn’t sexy or a good sell but I mean they don’t seem to get they are exactly like hairdressers who say do...

I know but then I remember that it’s 130 people in BACME but all mightnt have joined because they agree. and there are a few big kingdoms who’ve sewn their business models or maybe partnerships or maybe they’ve got a qualification or developed books in a certain treatment , or not ? but these...

And on that note, and the point in @Trish ’s brilliant letter to action fir ME which flagged gladwell using patients from his own clinic for his research I think - and I’d like ideas on who with- the risk of coercion in research needs to be brought up. As well as newbies being assessed in a...

You can’t have 30/76 ‘were pressured’ and 34 were harmed and suggest the same entity and managers can be left in charge just need to be chatted to ‘on their terms’ . No one about whom that would come up as a result can be chatted to and changed. I mean that is so bad really isn’t it when you...

THIS is what needs to be the starting point for implementation discussions NOT pwme or who are representing them being persuaded by BACME that not only is apparently the only way forward thru them , but also ‘patients’ must ‘behave’ and are threatened with if you don’t sign off these things we...

Yes I used slack in 2007 ish when it mainly the messenger type thing. So I know what your referring to I think (being aware that what I used then might have moved on loads over that time ) and can imagine that and the leaps 17yrs might have made possible thanks for confirming

Thank you so much for your replies. You remind us how much we go through with your last line, because it sounds like a lot you've weathered. I'm really glad to hear that you are doing well and you sound like you know your stuff on the checks that are sensible. I feel terrible that I'm not the...

You mean like share documents with edit? Or is there an actual forum feature?

yes on the it is interesting to understand more about these things and the different 'forces' in the charities that might pull one way or another. As I guess that is 'who/what' these things are, and I'd be intrigued to have a run-down for these players so I can understand more what the landscape...

NO I agree you are right to be cautious, good to hear a line about new ways forward involving seeking input though - but yes, too true there is a chance I've read what I hoped for into it :) and forgotten that there are many versions in between

I can see the thinking, but imagining a list of pros and cons (for different stakeholders eg those doing the forum vs us vs researchers), and thinking through any risks/issues would be extensive enough if this is considered seriously it would make sense to have its own thread.