Making a 'Charter for Ethical ME/CFS Research'

yes i think thats really important point Kitty

 

wow.... how great would it be if we got thier input at the outset, maybe even a joint venture?!

 

They may also want to offer feedback about things it would be useful for pwME to know. We can spot dubious research, but we don't always have a picture of the specific challenges that presumably face researchers working within particular institutions, funding systems, etc.

For instance, there's no point asking researchers never use X or Y as a measure or scale, if some arcane internal rule makes it genuinely difficult not to. The solution might be to ask instead that the data is presented in such a way that X or Y can easily be excluded from the analysis, even if it has to be given lip service in the body of a paper.

 

Because whatever the shoddy practice that the charter is trying to prevent is not specific to ME/CFS?

In any case, I'm still hearing different voices. Some are saying it is about a guideline of HOW research is conducted, and some others are still speaking of control over WHAT to research. It'll probably help to define the goal and scope first.

If it includes things like "no deficit thinking" or "no psychological data" though, it'll be rather transparent that we are trying to prevent any research that includes BPS aspect and there will be no point pretending that it is about the research process.

 

That wouldn't prevent another Walitt paper though. It wasn't about hypothesis testing; it was about phenotyping. Would you ban the use EEfRT test in ME/CFS? unsupervised exertion test? Outright ban anything psychologizing? Or require patient group's supervision over the studies?

I'm not saying that we shouldn't take political action. But we are taking action to achieve something. If the purpose is to prevent Walitt-like papers, you will need to ban psychologizing outright, or require supervision by the patient group. Will you get anybody onboard with that? My guess: probably no. It's more likely be perceived as an attempt to impose our beliefs on the scientific community.

 

Sure, I'd agree.

What about collecting psychological data to test the hypothesis that the fatigue is functional, for example. I'd think it'll be fine if the document simply asks to be clear about hypothesis and collect only relevant data.

 

Not sure about that one. It could be used as an opportunity to screen hypotheses. If they are testing, say, if fatigue is functional, it could well be Walitt or someone who has done FND study before and not likely have "proven record of communicating well with the ME/CFS communities". Besides, I wouldn't know how to prove record of communicating well. He/she could be new to the field. This could be rather subjective, personal and prejudicial, I would think.

 

some random top of my head thoughts on charter idea (post & run, still unable to participate properly in debate)

1. ethics review boards already have guidelines to consider when making decisions, if these were consistently applied rather than used as a tick box exercise we wouldn't be discussing here, as things stand a charter could be a good supplement
2. ME charter could have educational effect, especially for people new to the field. Good to get to aspiring researchers early and support them in improving study design. More difficult after they've put a lot of work into it and become attached to it
3. apply in first instance to patient org funded research, if works well there might be naturally taken up by other funders
4. job for world me alliance?
5. what vs how: patient orgs have the right to fund whatever they like with their donation money (just at the risk of pissing their donors off), interestingly it's mostly the big orgs like NINDS, not the patient orgs, asking patients for what research should be prioritised - all orgs should be thinking primarily about the how and the quality instead (at this stage, nobody can know what area breakthroughs are going to come from)
6. focus on Transparency with capital T, don't tell anyone what to do or how to do it but ask for very clear and detailed description of and justification for what they're planning - basically what they're doing for general ethics approval anyway just more detailed and earlier in the planning process, if study is funded this info is to go on to participant info sheets
7. include a requirement to run their plan past some expert patients (who exactly?) and respond to any concerns raised, this info is also to go on to participant info sheets
8. reasonable charter requirements unless very good reason provided for exemption: preregistration, full and detailed info to participants to allow genuine informed consent, open access publishing, data sharing (with patient permission), publishing of negative results
9. maybe consider (potentially tricky): possibility of enforcement? e.g. requirement to correct/retract if they didn't do what they said they would, or a public rating & comment (on suitability of methodology and cohort size, likelihood of meaningful results etc) by the approval board to help potential participants make up their own mind
10. charter could be supplemented by list of recommended but not obligatory tools (with explanation why recommended) , update more frequently than charter itself, as better tools become available

 

The purpose isn't to ban anything, the purpose is to discover the truth and help improve the lives of patients. If psychological research were likely to lead to answers or provide treatments, I would be all onboard. However, it is demonstrably the case that psychological research has had the opposite effect. Wasting money on useless studies that will not provide answers or treatments is something we have every right to prevent. ME/CFS funding is already scarce, the last thing we need is more wasted time and money...

 

As I said above I think there's a cultural issue here and I find it difficult to understand your perspective, to me your questions are somewhat of a non sequiter. I certainly wouldn't start writing a Charter with the confrontational outlook you propose, and I don't share what I see as an overly narrow definition of politics as 'action to achieve something'. Of course there has to be an objective but politics often proceeds with less definite progression, to invoke a bit of jargon, a Charter might be concerned with "changing the narrative" rather than list of definitevely banned things.

I agree that the confrontational approach you outline would be unsuccessful, and maybe within the cultural context you are referencing (USA ?) that is the only valid approach - but I would argue other cultures are likely to respond to less aggressive approaches which a Charter might be able to encompass. And as I said above I don't accept that there is any longer a definitive monolithic 'scientific community' that is in any way meaningful. To the extent that there is a remnant body of authority to appeal to, it looks to be predominantly white, western, male and patriarchal; for a disease that is global and predominatly affects women I'm not sure it is a body that can usefully be appeased.

I don't know whether a Charter will work, nor whether the effort to produce and promote it will be a sound investment - however I don't see any reason beyond the investment/return question as to why it's not worth investigating further.

 

There's a question as to why researchers pursuing psychological appraoches have been so poor at engaging with patients and patient advocacy - it is not simply that the investment in psychological approches to ME/CFS have yielded no benefit despite $millions spent - there is also the question of why the relationship between psychiatry/psychology and ME/CFS advocacy has been so confrontational.

The narrative from psychiatry/psychology has been almost entirely that patients are devient, without any meaningful efforts from psychiatry/psychology to engage with mainstream patient orgs to improve realtionships between the professions and the people they are purporting to help. This in contrast to multiple other medical disciplines - is it even conceivable that any one of the psychiatry/psychology researchers who've been involved in ME/CFS would look to the patient engagement exemplified by Decode ME ?

 

Certainly that, but there is a moral imperitive for the same to apply to the use of Public funds supporting research and to Public Institutions hosting research.