Making a 'Charter for Ethical ME/CFS Research'

Thank you for the long explanation and the link, Trish. We obviously have different experience and perspective. But I'm sure we are all looking for the best way to find the solution. My main concern has been possibly ending up hampering the progress more than aiding it ('cause I have seen that before), especially now that many more things are happening due to LC. But I'm sure you guys will work out a productive text. Meanwhile, it's equally obvious that I'd be more useful by sticking to what I know more about, like pacing. But I'll be happy to provide much narrower opinions on the proposed text off and on ('cause opinionated person I am!)

 

It's probably more personal than cultural. There are plenty of people upset about psychologization over here too and Americans are no less political. But I haven't been subjected to things like GET/CBT, possibly because I never sought out medical treatment. So, to me, things like effort preference are not much more annoyance than, say, mitochondrial dysfunction or "hibernation" as the cause. But I guess it could be cultural in a way since we don't have NHS (which I don't know much about) imposing solutions on us. Either way, it's probably fair to say that I have different perspectives.

 

In my mind this sort of thing probably is a bit like that phrase people say about good law: where the best law means that most don't notice it

I think that those who engage in good conduct might read the top-level asks on this and be a bit confused thinking 'isn't this obvious and what we already do'.

And that's the horrible dystopia we get caught in: where at the same time as having the horrible stuff that is hard to beleive how bad it is being chucked at us, those who aren't psychosomatic-minded don't believe us when we tell them what these awful people actually do. ie that gets 'stuck on' us as if others' behaviour being that bad it is hard to believe is our problem.

Not getting proper ethical sign-off before you use people's data for retrospectives, not protecting participants from 'perceived coercion' when measuring by their responses, switching outcomes so what people signed up for isn't reported or tested but some nonsense they've fished for is instead, adding your own 'spin' on interpretation of results that have mundane and obvious conclusions when certain hypotheses are either null or confirmed, asking questions about whether people 'steal things' when the research has nothing to do with anything other than someone being ill........the list is quite endless

Yes we might have to mention the 'type' of research because if you are doing muscle biopsies properly and reporting to scientific protocols then 10 people is a good amount, but a psychometric game or inference-based self-report needs numbers for power. But that is already 'in science' and 'in research' as basics in all of the methodology courses anyway. It just for some reason gets forgotten. And if you mix up one or nullify something that could stand by using something that shouldn't because you've done a little game that needed hundreds to validate with findings that were scientific claiming somehow one is linked to the other when the last one literally doesn't exist yet as an entity well...

 

Spot on. And there should be a guarantee that null hypotheses or refutation of theories are as straightforwardly reported as one would expect. Otherwise it is effectively not only a waste of funding for that, but a step towards more wasted funding on the basis of things never being refuted or challenged enough that they move forward and adapt to actual findings.

If the issue is that certain interests and their pet theories are effectively 'unchallengeable' because everyone is too scared to report if a null is discovered / have to heed the party line or whatnot then think how much wasted funding is going on things that can't literally ever be science. Because you can only ever refute a hypothesis, you can't ever actually fully confirm it anyway, just be more sure with better replication - on the basis that things might become more nuanced and unpicked as things are zero'd in on.
But if at that first fork in the road noone is allowed to say 'it's not left', we have a situation where we've been stuck with all our funding going down a drain of people repeating that same junction over and over again?

 

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.

 

except for the retrospectives done by those who ran CFS clinics it seems

 

I get why you think that but sadly when you think about how markets work it is actually the opposite way around.

Doing research badly is both cheaper and quicker. At first the majority might be able to sit with their integrity and feel better about being better researchers until they find that those who are filibustering the search engines and journals with iterative papers from research done by dodgy surveys with no blinded controls 4 times a year become their boss, get the promotion where they aren't teaching and get given the kingdoms with all the funding.

And then of course the funders wonder why you need ten times as much when someone can deliver something in a year that apparently ticks the box. And you'd be putting your career at risk pointing out the failings of that now top-of-the-hierarchy co-author's method.

So, if you want to keep your position you end up having to play the game, telling yourself better you - who at least cares - than the next person who might not. And so on.

SO no, it isn't free speech. It's being allowed to enter a market with a sub-par product and proliferate until those selling the proper product can no longer survive. It's drowning out the voice of others. And it is then effectively removing regulation, norms and protocols that might make a market fair by the back door 'because it has become the norm'.

 

Sadly the ethics issues have happened and ended up occuring under these stages. like retrospective studies taking cherry-picked 'records' from patients at their clinics. or studies that part-way through decided to drop the primary outcome that subjects' consented to, but carry-on regardless with a completely different focus and not tell said participants.

 

thank you I shall