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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.

And not that random/new. What I'm slightly hoping is that there might be some things from eg the market research society where formats like this have been tried - and if not why not get in touch with them? It sounds so pertinent for ME research, plus an interesting development for them...

Yes and yet people lumbered in this situation are important yo include and there should be ways around this such as vouchers (how does that work re benefits?), and we all need things like food shopping, or potentially other useful items (good reclining electric wheelchair, can’t think if other...

There’s a reall issue there isn’t there - constructive criticism and the belief of some that they can behave in s certain way when they don’t like what they hear and then try and blame that outburst on the patient - all because they want to invalidate the input because it wouldn’t work for them...

It sort of sounds like they are touching on asking themselves that same question in how robust the reply sounds about fixing things. Which if so I’m very pleased to hear about

Thank you Trish for your work on this I am so relieved that finally something doesn’t feel like a fob off inferring really it’s the patients fault etc that it felt we’d been getting habitually / knee jerk been believed to be the problem again. It was starting to feel desperate that our allies...

Is the IAG the same as these PPIs technically because if so it makes one think of that lurch those involved with that might be in. Even healthy people would be given the timeframe changes/movement. And to feel potentially over a barrel if you left and the political implications that person might...

There would be nothing more immoral than inviting someone in who gives what they don't have in good faith, more than was necessary, to find that same level of effort (all of what they had and more) isn't being matched in attempts to understand and represent that fully/it isn't genuine. So those...

I think a particular point is that I don't want to be in a situation where my experience isn't respected and there is some sort of discussion or debate process based on arguing with either people who are less ill than I am nor staff. It's not on. I'm adding something they don't know about and...

I'll hopefully be able to add more at another point but I've had a quick scan and agree with the responses regarding this needing significant adapation regarding committment and timeframes related to that, normally much longer spread out than people anticipate when they don't really understand...

I agree that we’ve an issue where many don’t understand that the iller you get the more gargantuan effort is required for things less ill don’t even think about doing - brushing their teeth is nothing and almost automatic whilst they get ready and think about the day. The determination when you...