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Are there any research standards guidelines in ethics committees?

I'll confess that you've lost me there! I sometimes think it's a pity that doctors don't live their lives backwards so that they can first experience chronic illness as part of aging and be on the receiving end of bad research, before then getting younger and becoming doctors. Maybe then they'd...

People, yes, but professionals? Where are all the professionals?

But this is on our plates. It has filled most of each plate! And I don't see others lifting, unless there's some way of enforcing the Helsinki declaration. We don't have to do all the lifting on our own. It may be enough to alert others to the need to lift.

It sure is but I'm not grasping what factors are at play here. There seems to have been a field-wide dereliction of research standards in medicine that's clearly against the interests of patients, and against the interests of doctors who care about patients. It's beyond weird that no fightback...

Do we know what sort of teeth that declaration has? If PACE was proposed now, how could the new Helsinki declaration but used to stop it?

Very good points. Is there no international patients' research charter?

Chipping away at specific issues could very much narrower the amount of professional support that we could expect to get, though. It's a good question where the right balance lies but I think the 'Go big' option is worth seriously considering.

That's very interesting! But surprisingly few signatories (14,000), considering the topic.

But what about all your colleagues who unanimously thought PACE was rubbish and clearly saw the issue with open-label/subjective-measures trials? That suggests that the vast majority of doctors, at least outside the behavioural fields, aren't witch doctors. Have doctors ever signed a petition...

I think I must be missing your point! I wasn't arguing that we should only suggest that people from non-behavioural areas should sign, only that those in behavioural areas might feel under particular pressure not to. Are we at cross-purposes?

I completely agree, but I was addressing your point that if you're in a behavioural field and speak out, your funding may be much more likely to be at risk if you sign such a letter/petition than someone from another field.

I'm off on a bit of a rant now, but on another thread: This is how we can get past the gatekeepers. We don't go through their gate.

The people I imagine signing this would be doctors/researchers who don't work in the behavioural fields. @Jonathan Edwards said: So those are the kind of people who can see the issue clearly. @Jonathan Edwards, are they likely to feel afraid of signing a petition/open letter? Students...

I think the target of the kind of letter/petition that I'm proposing needs thinking about very carefully. If we want big numbers, and we do, it might be better to either target nobody specific, or to target the full range of major organisations that perpetuate this shoddy, dangerous research -...

I think you make a very good point there! To Cochrane, we probably look like 15,000 patients in straitjackets complaining about being forced to take their meds. And abuse of a group of patients on this scale is so rare that when patients push back, we're going to look like the weird ones, not...

This post has been copied and following posts moved from: 2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles I think you make a very good point there! To Cochrane, we probably look like 15,000 patients in straitjackets...

I don't know. I'll flag the thread for the mods. Haven't come across this issue before!

I wonder whether a complaint to the journal would be in order? I knew an adult who read her own highly identifiable medical case in a journal paper that had been written without her consent or knowledge and she was very distressed about it.

Should we maybe not discuss it further on the forum? Could speculation here be damaging?