Making a 'Charter for Ethical ME/CFS Research'

Or, for something that meets certain other criteria? As good intentioned it may be, you never know for sure which way the ball will bounce once you insert the patient control into research. It's throwing the baby with the bath water, or burning down the house to exterminate the fleas (aka psychosomatic champions), to borrow Korean proverb.

 

I can see that getting a set of standards together that can be agreed on by a good range of ME/CFS-specific charitable funders might be a nice idea. It might even be agreed by some of the general funders like Versus Arthritis and Wellcome.

 

No argument there. But you never know what will happen once you leave the barn door open (or close the door in this case?) As much as we'd like to prevent it, we will eventually end up preventing something else as well once we insert patient control on all research.

 

You never know, it might just bounce in the best direction possible. If we don't try it we won't know - not doing something because one of the possible outcomes might be bad leaves it in the hands of people and organisations who have largely proved that they have no understanding of what the best direction is.

 

No it wasn't. But patients rose up in arms in support of it because they favored viral theories. If they had choice from the beginning, they surely would've funded it overwhelmingly in favor over others.

 

Except that all research involving patients is already under patient control in the form of informed consent. I think the idea is just to ensure that that process genuinely occurs in good faith - which includes things like patients not discovering later that studies are published behind paywalls.

 

To me, it's akin to free speech. People don't like certain speech, so they start censoring. Sooner or later, free flow of idea, and progress along with it, will be stopped. Doing more harm than good also applies to the remedy to stop things that do more harm than good.

 

And surely that is entirely their prerogative. Implausible theories sometimes turn out right. The problem there was just poor lab science.

There is a big difference between the influence of direct patient funding without scientific peer review - which until recently has been fairly limited - and patients overriding scientific review, which nobody is suggesting as far as I know.

 

Non-sequitur. We are not talking about subjects' informed consent to already designed studies here. We are talking about patient groups getting involved in the study design and execution (and even conclusion?).

 

That is an oversimplification of what happened. Cleveland Clinic positive findings, among others, played a role. There was much going on.

Irrespective of who leads the way, the most recent NIH fiasco a case in point. I'd rather patients have more of a role in the steerage; if something goes wrong we will be in a better position to appreciate why, and be able to respond faster and suggest corrections that more likely hold patients' interests as the most important (vs medical politics or patents or legacy concerns).

 

I think Hutan is talking about all these things.

 

If they are funding with their own money, sure. I meant "voted" or "directed" by "funding". Calling the XMRV fiasco just a poor lab science is being charitable, imo. I'd call it a fraud that took advantage of patients' sentiment.

 

This is where I would worry.

Patient organisations are a very mixed bag. There are very few official 'national organisations'. For rheumatoid in the UK there are several different sorts of organisation, some purely patient run, others mixed. Some have strong links with particular researchers with vested interests - exactly the wrong sort of people maybe. And for some diseases, (particularly non-existent diseases) there are even more seriously problematic organisations.

In this sense I would agree with poetinsf.

 

Not sure what voted or directed would mean here? If someone else funded it and the patients were keen I cannot see we can object. it might have been better to put money into other things but to be honest there were precious few leads to pick up on.

I don't think XMRV was a fraud in the sense of intentional deception. I am pretty sure the investigator believed in their results, however crazy that seems now. I have had dozens of colleagues who have done the same. People are irrational.

 

So are state institutions like the NHS or NIH.

 

Are we simply talking about communication? Requiring patient involvement in design, management and publication seems a bit more than that. Good communication even before the design may be a good thing; getting involved in every stage probably is not. The purpose there is more of censoring than communicating, it seems to me.

 

Do you really want to see patients pick and choose which studies get funded? That might be democratic, but democracy is not the best tool to solve a scientific problem.

When Judy Mikovits showed up championing the far-right conspiracy theory, I felt vindicated. I suppose even a fraud could make herself honestly believe in what she does.