There is a worrying amount of fraud in medical research, 2023

The Economist

There is a worrying amount of fraud in medical research

IN 2011 BEN MOL, a professor of obstetrics and gynaecology at Monash University, in Melbourne, came across a retraction notice for a study on uterine fibroids and infertility published by a researcher in Egypt. The journal which had published it was retracting it because it contained identical numbers to those in an earlier Spanish study—except that that one had been on uterine polyps. The author, it turned out, had simply copied parts of the polyp paper and changed the disease.

“From that moment I was alert,” says Dr Mol. And his alertness was not merely as a reader of published papers. He was also, at the time, an editor of the European Journal of Obstetrics and Gynaecology, and frequently also a peer reviewer for papers submitted to other journals. Sure enough, two papers containing apparently fabricated data soon landed on his desk. He rejected them. But, a year later, he came across them again, except with the fishy data changed, published in another journal.

Since then, he has teamed up with other researchers to investigate groups of papers by authors he has spotted as data fabricators. Wherever he saw smoke, he found fire. There were tables on patients’ characteristics that contained only even numbers. There were values that were clinically unlikely. There was an implausible 40:60 sex ratio of babies when the mothers-to-be had, purportedly, been selected at random. Eye-popping speeds of completing clinical trials were common.

https://www.economist.com/science-a...-worrying-amount-of-fraud-in-medical-research - requires subscription, however full text appears with Javascipt turned off /use of Ad blockers.

 

Judging from the intro, I doubt they include anything BPS. Sometimes I wonder if it's because it's not considered real research, or medically relevant. Or if it's just because we're considered worthless so fraudulent research is OK for us.

But this is a vast underestimate if it does not include the dregs of EBM and especially everything BPS. Problem is that it's actually mostly fraud, so it's just too big to take on, has too many major implications for the whole profession. And then of course there's psychology, but psychology applied to healthcare is where it's the most harmful. Elsewhere it's mostly silly, leading to weird stuff like power posing or whatever.

There is a lot of fraud in other industries, but it's rarely about the substance, it's usually about ripping people off, inflating prices, etc. It's not nearly as bad to rip off funders when building a bridge if the bridge actually functions as intended. When you don't actually deliver, you get caught. See: Theranos. High-risk investors have far more protections against fraud than sick people.

In medicine it's turbocharged like I've never seen before. It's likely that there is more substantial fraud in medical research than in all other fields of science combined, at least in terms of how harmful it is, how much it impairs progress and the consequences of it all.

It's not worrying. It's catastrophic.

 

That’s good to know. They sound from this article like people devoted to the pursuit of truth, so presumably they move at lightening speed when a review needs to be revised.

 

I think this is the reason. The main purpose of psychiatry/psychology is for crazy people (= people with complex illnesses) to have someone to talk to so they stop complaining or otherwise causing damage to society. A containment zone of sorts. A political tool, more than a medical one. A psychologist can explain to you how you should live life (CBT), if you don't want to listen do your own thing but stop bothering us with your lunacy.

It's a bit like politicians lying about things and not keeping their promises. There are some people out there doing fact checking but it's mostly just something we expect. A psychologist is not a scientist just like a politician is not an engineer. The standards are totally different. I don't think psychology papers are considered medically relevant.

 

Are these fraudsters given any punishment? I think they deserve to be on a journalism list for "known fraudsters", and be required for all further papers from them to clearly indicate that they had been found/convicted of scientific fraud.

 

This is what Strauss did for ME when the CDC investigated the Lake Tahoe outbreak. When he discovered that it was not chronic EBV. He dropped the requirement for a positive EBV test and renamed his initial diagnosis of Chronic EBV Syndrome to Chronic Fatigue Syndrome. That is how an outbreak bad enough to call in the CDC has a main symptom of 6 months of fatigue!

 

The post-infectious thing after EBV is not just 6 months of fatigue though. So if he based that on the lingering symptoms after EBV, he was wrong, he just simplified the symptoms as fatigue, the same way we see this going on even today. The definition was bad, it is not the fault of the post-viral illness after EBV.

When I fell ill a couple of years ago, I spent my first year entirely on this mononucleosis forum. It was and is full of people with post-infectious symptoms, people with acute infection are rare there. They are newbies to this, they don't know about ME/CFS or know very little about it. They are clueless. Most people there tend to believe it is still the mono somehow that they have (they don't - the actual symptomatic infection lasts 3-4 weeks). A lot of people did slowly recover in the first 1-2 years but not everyone. Those just leave the forum and go over to ME/CFS communities, like I did.

The symptoms can be very diverse though and when I was there when I fell ill, sometimes it was hard for me to believe we all were suffering from the same thing. It was much later, when I saw the Canadian Consensus Criteria, that I understood it was probably indeed the same thing, since the CCC tries to cover the diverse symptoms quite well. For me that was a big "aha" moment.

I'm including some examples from the forum (it is public). These are from the last posts and comment section of the last page. Fatigue is one of the commonly mentioned symptoms, but far from the only or primary one.

Btw, referencing what he wrote, this is what the NHS website says:

'You should feel better within 2 to 3 weeks. Some people might feel extremely tired for months.

Try to gradually increase your activity when your energy starts to come back.

Glandular fever can cause your spleen to swell. For the first month, avoid heavy lifting and sports or activities that might increase your risk of falling, as this may damage your spleen.

---

Most people get better with no problems. But sometimes glandular fever may lead to other problems like:

• mild liver inflammation (hepatitis), which causes yellowing of the skin and whites of the eyes (jaundice)
• low levels of blood cells called platelets (thrombocytopenia)
• neurological conditions, such as Guillain-Barré syndrome or Bell's palsy"

If you follow the forum regularly, you can find people with racing heartbeat, low-grade fever, blurry vision, pins and needles/tingling, etc etc. And none of this is rare there. And yes, a lot of them have fatigue too. But the problem was that the Fukuda definition was badly defined, not because post EBV symptoms are mainly fatigue for 6 months. That's just not true if one listens to the actual people describe it (and not to doctors who will describe it as fatigue, just like on the NHS website).

 

The definition of CFS was very bad because it did not come from studying patient experience. Strauss said that all the patients had fatigue so that was put in the name though it is possible that he was influenced by all the doctors wanting to research fatigue. If you could find a drug to lift fatigue you would make a fortune. The likes of Sharpe and Wessely used it that way and managed to make a fortune even though their treatment didn't work.

It is not surprising that EBV was reduced to fatigue. Doctors tend not to look at stranger symptoms if they think the big ones are enough for diagnosis.

I think EBV can lead to ME but it can cause a long term illness in its own right. People who were very ill, bedbound even, then got well after a few years usually had glandular fever. It was a problem for a while as it was used against those of us who had a milder disease but did not get better.

EBV persists in the body so reactivation and causing other problems over the years makes sense.

Covid looks as if it has the same pattern. ME is a specific disease that can be caused by viral infection but all long term disease from a virus is not ME.

 

There are some similar recoveries after other viral infections too though. I remember reading about some recoveries in post-influenza cases of ME/CFS. She is the one I remember in particular, as she is famous, a world champion: https://olympics.com/en/news/surfing-tyler-wright-owen-comeback-chronic-fatigue

There is also someone in my group who was diagnosed with ME/CFS by an immunologist after a parvovirus infection and completely recovered three years later (just to get long covid a couple of years later). There is also long covid of course, with its own recoveries.

I'm not sure that post-EBV recoveries are more common than in other post-viral syndromes or we simply hear about those more often. It may be simply that EBV-triggered post-viral syndrome is more common (eg the sheer number of people with it is higher for whatever reason than for other specific viruses), so we tend to hear about those recoveries more simply because of that. Just a possibility.

I'm also not quite sure that if there are two post-viral illnesses with eerily similar symptoms, which similarly don't show on medical tests and are yet unexplained, then they are two different diseases because one remits spontaneously. If cancer remits spontaneously, which it sometimes does, was it never cancer then? Does it cease to exist as cancer retroactively?

I mean ME/CFS may very well be a few different diseases, I'm just not really convinced that this is where the divide is in this.

 

My ME onset was associated with EBV and it was not possible on the basis of my symptoms to say if/when my glandular fever (mononucleosis) ended and my ME began. Cognitive issues as well as PEM were present from the very start over and above fatigue. After a number of years (four or so) I believed I had made a total recovery, though in retrospect there were some persisting issues, however had I not been previously diagnosed a referral then would likely not have found I met the conditions for an ME/CFS diagnosis.

After several more years I suffered a major relapse associated with a dose of influenza, displaying the same pattern of symptoms though more severe and with much slower remission. It is nearly thirty years since my initial glandular fever and twenty three years since the flue triggered relapse. Over the total course of the illness I have developed additional symptoms, had further relapses though without such clear triggers and and now am much more severely impaired, however there is enough overlap for me to feel that I have had the same single condition through out the full thirty years.

I don’t think we are in a position to distinguish between a post EBV fatigue condition and ongoing ME, though we do need longitudinal prospective studies asking what is different between transient post viral fatigue conditions and ongoing ME and also what is the relapse rate in people who appear to recover. (Note. Is there such a thing as sub clinical ME? We tend to hear more about people who had ME as children recovering but then relapsing again as adults.)