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

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CRG

Senior Member (Voting Rights)
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.
 
rvallee said:
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.
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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.
 
The author, it turned out, had simply copied parts of the polyp paper and changed the disease.
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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!
 
Mithriel said:
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!
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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.

10 months on and looks like mono is here to stay, i hope im not alone.

Hi, i am a 21 year old male and i was out at the weekends a lot beginning of last year, making the most of the time i missed out on during covid. Then i noticed neck glands swelling up in the middle of april. I had really bad tonsilitis and then tested for epstein barr virus. I don't even feel like the same person I did this time last year. I could go out every weekend with no issues and now even just a full working week is enough to wipe me out. I had to cancel a lot of plans over the summer and be very careful picking and choosing what activities i did with the energy i had but I always had read online you will be okay after 6 months and that isn't the case. Upon reading other peoples experiences with this it seems that it is massively downplayed by GPs and they don't seem to understand the impact it has on your whole body so i thought i'd share my symptoms since the diagnosis.

Brain Fog - comes and goes in waves but can be horrendous

Fatigue - Felt like i have had 1 hours of sleep even if i had 10

Lower general mood - Thinking theres improvement but constantly being knocked back is draining

Aches/Pains - Waking up like i have done a triathlon the day before when i did nothing

Swollen glands - Never disappeared in my neck on one side. A bit smaller but Sometimes ache but have had an ultrasound which came back fine.

Trouble sleeping - never had an issue with this beforehand and now always wake up in the night for months and months which makes symptoms worse.

Itchy Skin - Randomly all over body which comes and goes in waves

Sensitivity to light - This seems to have improved a bit but sometimes made my eyes burn

Sinus problems - had sinus issues around august which havent gone away and sometimes cause pressure headaches, antibiotics didnt work for it.

Tremors/tingling - This is also a little bit better but happened for a fair few months mainly in jaw and hands

Lower left abdominal pain

Ear ringing

Some symptoms pass and new ones occur over time it seems

Getting covid also seemed to reactivate things

I have been back to the doctors a few times and just get told im a healthy male and the repeat blood tests are all fine and just say "its the glandular fever or stress". I felt very alone as the nhs website has no mention of anything like this and seeing the stories on here helps so i am trying to add to that.

I have a situation with a very ill parent at home so i feel bad complaining about myself when thats nothing in comparison.

I hope one day i can go out without worry of being wiped out for a while afterwards and get back to enjoying my young life but not sure what to try and health anxiety from the situation at home makes things worse.
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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:


In early November 2022 I started to feel very unwell with fatigue, swollen glands the aka the more standard symptoms. However the following 2 months or so i expienced twitching almost all over my body and pains and aches all over as well as what i can only describe as very odd sensations all over my body. My symtomps were so bad i had to defer my third year of university. i've probably forgoten some of it now as i've tried as best i can to forget the last few months. Its now Feburary and whilst i've seen improvement in both the pain and fatigue they are still present. I'm now plagued by what i would call odd symptoms. ive had twitching in my eyes which was bad for a few weeks but has now settled down. More recently i've had ringing in my ears which at first was debilitating but is now more annoying and only disruptive when i try and sleep. It also occasionally flares up with becoming loud for about ten seconds or so with fluctuations in pitch. Whilst i was servely depressed through december January I have managed to push myself into a better headspace and am even managing to work as an office temp (Didn't think this would be possible a month ago so am super happy about this) I just wanted to ask if this is at all normal and if so when I can expect the pain, fatigue, twitches, ringing in my ears to subside?
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  • Hi Jack,

    i an coming up to my second year of EBV and to be honest for the last three or four months i have noticed real progress. i have energy now most of the time, yes i get off days but who doesnt. i had EBV so bad in the beginning with every symptom going and to be honest i still get a lot of them but they dont bother me like they used to. i have constantly been told all my tests such as nerve studies and brain scan etc and they have all been fine.

    i get the muscle twitching all the time too and the doctors don't seem to know why but like i say the nerve studies and muscle studies were fine. i have found the best way to cope with this illness is to not get stressed about it and realise that it cant hurt you. stress makes it so much worse and worrying about every symptom drives you insane. i get very bad stomach nerve pain from it and its agony at tines but i know its the EBV and i just forget about it and dont think about it and it passes. the symptoms come and go all the time. if your results are all fine and you have been checked.

    all i can say is it gets easier and its the worst virus i have ever known. feel free to message
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I am 16 months into my mono illness, and perhaps have some degrees of long covid on top of that (I first contracted Covid 4 months into mono and then 6 months after that a new infection/relapse, I am not sure)

Currently I have the same feeling of shakiness, but it feels more like cold-sensitivity, shivering, goosebumps. I am not sure if these are symptoms of my mono that relapse after a few days of physiscal activity, or long covid (because they share similarities, even some experts hypothesise that long covid is caused by EBV reactivation)
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after i had mono in feb 2022 i still don't feel like myself, it literally took me months to feel some what normal & my symptoms are starting again. i have been to the doctors non stop and everything seems fine. & im pretty sure at this point they dont know what to even tell me. i am going to make a appointment with a infectious disease doctor because im literally losing my mind!!

my current symptoms are

  1. burning/sore throat
  2. breathing on & off
  3. major fatigue
  4. depression/anxiety
  5. pain in lymph node


    6 feels like flu symptoms or allergies i dont even know any more

    7 hot flashes/ cold

    8 brain fog
literally im so scared of this thing and dont know what to do ,it literally feels like im losing my mind or i think the worst case scenario! does anyone have the same problem or any tips? i would highly appreciate it!
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Hi I'm 59 years old and into 11th week with this dreadful virus. I have experienced many symptoms which have come and gone, but apart from the debilitating fatigue, the nausea is the most relentless. I get some days when it is more low key than others but it always comes back with a vengeance. How long will it persist and what is the cause of it? I cope better when I understand what is going on in my body. Can anyone explain?
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Hi all,

about 3 to 3.5 months ago I was severely sick for about 3.5 weeks with glandular fever ( after numerous blood tests confirmed ) I then went back to work for about 5 or 6 weeks while still suffering severe fatigue , brain fog, full body pain all the time, I was going straight to bed after work and basically in bed every weekend for the whole weekend ( I work a very physically demanding job/ heavy labour tradesman ), I then caught what I thought was a common cold which led to a sinus infection and absolutely no energy, extreme pain and weakness, muscle spasms/ trembling, problems with memory and brain fog still ongoing, night sweats on and off, virtigo, I have currently not worked for a little over 4 weeks as even doing simple tasks around the house have barely been possible, as much as a simple 30 minute trip to the shops with my wife doing the driving is enough for me to need to sleep when we get home
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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.
 
Mithriel said:
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.
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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.)
 
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