Medicine is plagued by untrustworthy clinical trials. How many studies are faked or flawed?

[almost]

I ran across this and thought I'd post it for discussion. I'm interested to hear what others think about this.

https://www.nature.com/articles/d41586-023-02299-w?utm_source=pocket-newtab

For those of us non-researchers, there is a tendency to rely on papers, studies and trials, placing a lot a blind trust where this suggests it is not always warranted. It would appear that the road to answers to our condition may have some bad actors.

I read a lot of papers, and at times find something I think is worth trialing. I see a lot more here, and enjoy the discussions. A n=1 trial is within my grasp and I can see my own results. It's certainly not perfect, as I lack a lot of controls, but I do think it is useful.

I look forward to hearing your take on this.

 

[Judee]

I think some here have gotten good at studying the studies.

For instance, @dannybex does a good job on the linked thread below however I don't think most of us can do that as well as he did. I can't...too much brain fog and also not smart enough.

Some here are like deep sea divers whereas I'm just floating on the surface trying to picking up the gist of things.

https://forums.phoenixrising.me/thr...to-fiber-probiotics.60291/page-2#post-2241005

Like you said though when I see something mentioned in a study, lots of times I will come here to see if it's been discussed and/or if anyone has been helped by it.

 

[JES]

Well, let's start by getting some biomedical trials for ME/CFS first and then we can worry about the quality. Even with all the money thrown at long COVID, it seems we only have around a dozen biomedical trials going on in the entire world and probably some of them will never reach the finish.

 

[dannybex]

I think some here have gotten good at studying the studies.

For instance, @dannybex does a good job on the linked thread below however I don't think most of us can do that as well as he did. I can't...too much brain fog and also not smart enough.

Some here are like deep sea divers whereas I'm just floating on the surface trying to picking up the gist of things.

You're too kind @Judee . I think my brain was working better back then!

But overall, I think it's always a good idea to look for human trials/studies, and also look to see if their conclusions have been backed up by other studies.

And personally, I look wherever I can find studies on mito function or dysfunction, on the gut/microbiome, immune dysfunction, the krebs cycle, the effect of chronic stress(ors) on the gut, on immunity, etc., -- all things tied to ME/CFS. And yes, there are some ME/CFS studies -- actually quite a few -- so if I find info in them, then I try to cross-check that with similar studies outside of ME/CFS.

Having said that, it's also a really good idea to make sure you don't overdo it studying studies!

And with all due sincere respect to @JES, the govt has a decades-long track record of no interest in our condition. I can't wait for trials on ME/CFS alone. Just gettin' too old. In my silly opinion, there's enough out there to at least help improve our situations somewhat, as quite a few have done here on PR.

 

[lenora]

OK....Judee, I personally think you're too hard on yourself. Some of us are just better at certain things than others. I think you know a lot and are very generous with it.

Dannybex......I agree. Don't overdo it, studying studies. There are so many and at the end of the day, we can simply lose our minds in them. Having said that, thanks for your help. Yours, Lenora

 

[YippeeKi YOW !!]

For those of us non-researchers, there is a tendency to rely on papers, studies and trials, placing a lot a blind trust where this suggests it is not always warranted. It would appear that the road to answers to our condition may have some bad actors.

Unfortunately, most papers are now published by pay-to-play sites. Frontiers is one of the worst, tho sometimes some of their studies, flawed as they may be, yield interesting food for thought. Frontiers 'Peer Review' system has been under continuous assault by real scientists, who are generally offended by the Frontiers offerings ...

In my silly opinion, there's enough out to at least help improve our situations somewhat, as quite a few have done here on PR.

Along with @dannybex 's excellent suggestions, also check out the people writing and producing the research for conflicts of interest (often they all either work for, or are associated with, various branches of a corporation who's funded the study and knows what they want it to prove), or the institutions they all work at or participate in .... it's one of the first things I do .... you can usually click on the names of the researchers for more info ...

 

[YippeeKi YOW !!]

Another source to watch out for is ELSEVIER.... owned by a husband wife team who went after the man who wrote a blog about the issue of the ever-increasing bogus, pay for play 'scientific' research sites like Elsevier, and routinely named the worst offenders with evidence and proof, and Elsevier sued him out of existence....

His blog no longer exists, and he was the primary source of information about who and what to watch out for .... the Elsevier actions bankrupted him, and even tho he fought hard and generally won , in the end, he lost pretty much everything ....

I wish I could remember names, but I'm at a functional, physical, and cognitive low unlike any I've experienced before, or at least as bad as the worst of them. Right now, I'm thinking of writing my own name down someplace for future reference .... you know, just in case ....

 

[Rufous McKinney]

but I'm at a functional, physical, and cognitive low unlike any I've experienced before, or at least as bad as the worst of them. Right now, I'm thinking of writing my own name down someplace for future reference .... you know, just in case ....

Here is one vote for This Too Must Pass, and Soon....

That story about Elsevier is appalling.