University of Melbourne article: Science needs to look inward to move forward, 2020, Trounson

https://pursuit.unimelb.edu.au/articles/science-needs-to-look-inward-to-move-forward

I thought that the article was unduly positive about some of the attempts to improve things, but found the background on where things are now of interest, eg:

 

Yes, I have a sense of another Cochrane situation here. Those who would be thought police are very likely to have an axe to grind of their own. We hear:

Yet another initiative of MetaMelb is the development of concrete guidelines that peer reviewers could use to more uniformly assess research methods and findings, providing a sort of check list.

Would that be like GRADE and the Risk of Bias Tool 2 then?

Vazire wants to persuade that she is having an impact: “Certainly things are changing"
Like you I am sceptical. If the project is genuinely altruistic nobody will invest in it. If it has a hidden agenda then it is not going to help.

 

Maybe patients sitting on funding committees can fix things. That could cause its own problems but maybe the overall balance of interests will be healthier.

 

And that was a good thing, which resulted in good research that is ongoing. The BPS crowd made some noice in the media although. Mainly because the Lightning Process research was turned down. They misrepresented that in media, that it was all because of the patient-involvement. But it wasn’t, and that just shows the good media contacts that the LP proponents have, they can control a bit the narrative, sadly.

 

There seem to me to be problems on four levels

- deciding what research to fund
- decisions by ethical committees and monitoring changes in ongoing research
- deciding what should be published and policing the consequences
- how published research influences clinical practice and health policies

From the point of view of ME research we have time and time again been let down at all levels. The article at the top of this thread focuses primarily on the issues around publishing, and though getting this right will be a fantastic achievement and would hopefully have a knock on effect to the other stages, by itself this is not enough to remedy the significant failings in medical care for people with ME.

If the publishing process is sorted we will see retraction of articles supporting harmful and/or irrelevant interventions, which in itself is a step forward, but we need much more to ensure the right research is funded and here the suggestion of more patient representation would be a step forward if it was genuine representation. Even then it will take a lot more work to change society’s attitudes and understanding, for example how many people including some doctors still see ulcers as primarily stress related.

 

After getting ME and seeing the flawed (sometimes fraudulent like PACE) research I lost a lot of respect for scientific journals and the peer review process. This doesn't make me anti-science, just more cautious about what I believe.

I think faith in science is an oxymoron, however people and doctors do seem to have faith in journals, Cochrane reviews, and such.

 

I think that most of us would be fine with competent research on the psychological and social consequences of illness. In fact it would be quite helpful. But the BPS/MUS/FND approach has finality in mind, it has already decided what the answer is, one that has been fully debunked already, both in research and practice. Excluding it isn't a matter of excluding psychological research, it's just filtering out pointless wastes of resources.

There would be no support for super duper biomedical research based on a similar process either. And they know this. But they lie, because lying is necessary in this ideology. They lie to us. They lie about us. They lie to their medical and psychology peers. They lie about their methods and results. They lie about everything. They even lie about lying to and about us. All they do is lie in the slimiest way possible.

Ain't nobody got time for that. They can fund their mutual admiration society themselves if it's so important to them, it's super cheap anyway. But research funding is not a private piggy bank, it is supposed to be based on merit, and this ideology has no merit whatsoever. As any ideology does, for that matter. The very pursuit of ideology shows a complete misunderstanding of both the letter and spirit of science. And in medicine it shows profound disrespect for those affected.

 

By "looking inward", does that mean they are going to do experiments to study scientists themselves?

 

I think all research papers should be free to access for everyone not just a privileged few. That way there will be a better chance at spotting flaws and improving research.