I think in the perilous situation pwME are in, and with the past history of the CMRC including BPS promoters, it is reasonable for its PAG to have a way of informing pwME of their stance on ME/CFS science and medical and care. How otherwise are we to trust them to represent us fairly and accurately? Whether that means naming them, or providing statements from each of them I have no idea.
Given that the current members of the PAG were presumably promised anonymity, we clearly should not out them.
But if individual pwME or carers are representing pwME in decision making bodies such as Government delivery plans or funding decisions, then I think those individuals should be prepared to be named and contactable via the organisations they represent.
There are ME/CFS related organisations with patient reps who are working against us - eg Colin Barton's Sussex group, and Paul Garner on Coffi. There are likely also to be a lot of patient reps who are well meaning but have little knowledge or experience beyond their own illness, and may therefore, with the best of intentions, give very poor advice. Take Sarah Tyson, Russell Fleming and the recently ousted head trustee of the MEA, for example.
I'm thinking that for the purposes of external validity - and to use the market research term 'qualified to answer the question' (ie you can't talk about what the buying experience was like for the store if you never bought anything). And then that really becomes complex when you imagine struggling at work for 6months vs been there done that for a decade in different roles and ended up disabled and how wide the question is.
there needs to be something around confirming composition and views but that isn't along the lines of the tosh of pretending there is balance needed for climate change panels on news programmes handing over 50% to people with a certain ideology when that isn't representative of any range or any population or indeed experience needed, just giving 50% to those who will sponsor a certain outcome. That is just a trick to back-door in something based on politics rather than truth/getting job done interpretation of the term 'representation'.
plus you can't have people who haven't experienced x fully answering the same questions on x and given the same weight if that is the topic. What those who are yet to work in y area think they need is important, but not to be mixed in with the information from those who already do or have worked in y area saying turn out to be the real problem areas, or what actually led eventually to them getting iller etc.
I don't have the quick answer to this without some thinking but there are ways of doing it better. And it is worth further discussion.
And particularly for ME/CFS then no you can't just have these PPI things being a black box even if we supposedly trust the organisation doing it has the right intention.
But we will be excluding some of the input for areas that are affected should anonymity be not possible - current workplace stuff in particular but also those who have unsupportive situations outside of this wouldn't want their name googleable.
And there is risk regarding level of honesty if people are being linked back to what they say that it will curtail what they feel safe actually saying. But as it is I don't know what the circumstances are anyway as to who internally finds out or sits in the room that could impact that too.
But yes anyone can claim on a form x when they actually believe the opposite and so even if it was any good to go with ideology you'd have to check it was followed through with (because I bet it only goes one way that people would do this and they don't want the other way happenning just to compensate either). And even references are fallible there because we are all exhausted and other pwme might think someone trustworthy based on a long time of experience but how much do you need to know of someone etc?
But even then you need safeguards that mean those who tend to be iller aren't being attritioned by the ability to speak louder for longer of those who think they were cured by brain training being allowed in or providing more extreme answers if it is a survey were averages are used.
And people not being that bothered about that line being included from someone else because it won't affect them in their circumstance/they can say no (as are supported well), and they assume 'others' or even they themselves 'might like a bit of supportive CBT' and don't need to think of how that could be used, can be just as much of an issue in propping up things. A lot of people can't see the unintended consequences/slippery slope of something they just 'don't need themselves' but haven't yet experienced the harm in or don't know that is contributing to harm other pwme they know experience, nevermind if they are exhausted or filling it in under time pressure or a difficult meeting etc.
And very few genuine pwme live in a situation where they could meet short timeframes to deliver properly and well-thought-through amount of work vs those who aren't trying to service committments above their threshold whatever their severity. So there is the worry there that ways of working can inadvertently be used to prioritise certain input.
