Requiring the patients' involvement in design, management of the study, or approval of patient organization, could exert enough pressure on the research directions. I was hanging out in Phoenix Rising back in 2008, and the viral cause, not just viral trigger, was the dominant strain (pun intended) that patients lined up behind. If the patient community dominantly favors a particular theory, that could sip into their control on the research. That could not only hinder finding the solution, I personally don't think any researcher worth their salt would get into an environment where they need the approval of patient groups for the design and execution of their research.[/user]
and of course power corrupts. wherever you think it is placed, it either changes those who get it, or those who chase it play the game etc.
I do think, however, that 'tooling up' and 'requiring responsibility' from those who are placed in any position where they are representative, whilst sticking to democracy type principles is a better approach.
There is a circle also with the whole 'fair doesn't always mean equal' and that being a big issue with representation vs a very debilitating condition indeed and normal processes that apparently preserve rights most take for granted in this situation regarding research with other illnesses.
I was impressed with
@Hutan 's description of how ethics boards work in New Zealand - where there are ethics experts, as well as functional experts. Which allows for the matrixing of the expertise and of course for dirty tricks to be picked up on more quickly because of having individuals who are focusing on the admin side of doing lots of ethics boards.
I also think that the rumour-mongering about CFS vs ME means that even most patients don't realise how sick pwme can be, or how affected their own ME is by for example coercion that plays on their exhaustion and uses pat-on-head tactics (not
you, you do really well and still get up and go to work, but the
others, but also plain and simple 'well-dones' when someone agrees with the staff who outnumber them on a board). Typical behaviour psychology icky tactics of making one pathway for someone landed on a board 'nice and easy and you can get to the end of it with your health in tact and are led to believe you've made friends' vs 'ooohh bristle, bristle, I can't hear you and we are all going to pretend we can't understand and then the usual grim bullying tactics we pretend aren't playground but are just what do you expect'.
SO people will need a heck of support given what they are likely to be thrown into. BUt also these are people who have their own ambitions and interior world and wanting friends and so on, and just dream of things like respect and recognition, so these things shouldn't be made to be such gross sacrifice 'to do the right thing' vs big gains for deluding oneself.
Those who had a brief glimpse from a year post-viral that might have affected them as they felt badly and changed their life, but they recovered, and feel happy about what they did or received need to feel the weight of their taking a place representing a whole community who might have had a different situation altogether. I never fully understand if there is an analogy eg with other diseases where someone who had a mild form and recovered can be wheeled in 'as representative' for those who will include the devastating end without at least a serious check on their education on it. OR for appropriate adaptations meaning that those who have had a serious end of the illness
are heard and their word is properly incorporated in a way that isn't dependent on them fighting 'beyond their health'.
So you have ill, exhausted people who are targeted by a process not adjusted to not wear-down and surrounded by people who will likely if not having direct experience of having done a board before will be in a sector where they will be part of more in future and have colleagues to ask. WHo have very different objectives and things to bear in mind. On something that is highly administrative and almost certainly daunting - you'd need to be very bold and assertive to go into it fully-healthy and not exhausted and decide 'I'm going to do this by the book' if you were surrounded by busy academics who just needed to get back to the day job and were oh so sure their colleague 'has got this covered so it's just a stamp of approval'.
SO I think we need something like ACAS, but better to support people as well who are going through it. Because it isn't
really about changing the 'law' or 'requirements' underlying research, it is about underlining how those can be honoured in the context of a sector that has been dirtied with game-playing and has some very vulnerable research participants due to both health and the coercion that can be used because of the position they've been put into.
I don't want it to go through current patient organisations either - although marketing of these things should/would - I think it very much needs to be a legal type of charter that is no-brainer seeming. And would look down for example on any universities who had their staff breaching it or ethics committees signing off things that blatantly didn't properly discuss some of the issues flagged (like how will you ensure patients both are and feel safe saying eg 'this did not work for me at all' given the PIs have the power to write to those who might impact their future medical care or other types of well-being)
It feels so no-brainer that I almost feel the test might be that other patient communities who have people as sick and vulnerable (eg the ASD community have had some terrible times of it, but also certain mental health conditions) either using or adapting such a thing.
I shall 