[This article is an incomplete draft. If you wish to see a list of all drafts go to this page.]
Low Quality
- Being written in a scientific journal does not mean something is true. Often single poor studies used to trick laymen into believing treatments and such.
This is more of a “my person experience” rant then a high quality discussion as I don’t have the energy for the latter right now, but here goes:
Why do a chunk of published studies in ME/LC feel absolutely worthless? Why is it almost easy to find errors in published papers in this discipline? Why do the descriptions of the illness in the literature tend to be littered with inaccuracies, sometimes even misspellings of the name and unfamiliarity with the diagnosis criteria? Why do the large majority of papers overstate their findings, and have abstracts containing unsupported claims? Why do many papers pretend to be in a sort of void (ie. tested a couple blood markers and found no difference with controls => conclusion: Long COVID is probably psychological, completely ignoring the mountain of research showing biological abnormalities)?
Perhaps this is the Dunning-Kruger effectspeaking, but I feel like if I had the energy to do it, I could write more balanced and informative non-technical parts of a lot of these papers. And I have no specialisation in biology/medicine at all, all I have is this illness and I’ve spent a decent amount of time on this forum this past year.
Is this a normal thing in medicine? Or is this specific to ME/LC? Or am I imagining things and being unfairly critical to researchers?
I want to note this criticism does not apply to every researcher at all, and there are plenty who are doing a wonderful job. And even those I criticise have far far far more medical expertise than I have a chance of ever achieving during my lifetime.
But a non-negligeable chunk of these papers written by professionals don’t feel professional at all. It often feels like the authors either haven’t bothered to read up much about LC/ME and their views are partly formed by stereotypes, ME = Fatigue etc. Or they are entrenched in some personal belief system about ME or LC and see everything through their pet theory ignoring the fact their theory hasn’t been proven yet.
https://www.s4me.info/threads/incompetence-and-“useless”-research-into-me-and-long-covid.41154/
About agreement more than innovation
It feels like in practice peer review serves more as an enforcement of “bias” and pet theories of the current group of “experts” than it does to ensure quality.
Science is about innovation, about challenging long-held beliefs. But at least in the medical field, peer review seems to hold that back.
In the case of psychosomatics
It’s compatible with the literature in a small psychsomatic echo chamber. They are the self appointed experts on FND (since they created it), and therefore they must be correct.
Their papers serve as a self admirtion society, consistently hyping up each others theories without bringing sound evidence. This happens until whatever they say becomes so embedded in their literature, repeated hundreds of times, that it must be true, and no one bothers to question it.
Heirachical Culture
The way I see it medicine is not a science. It’s a heirarchical culture formed around interpretions on how to apply a science “huaman biology”. In medical training, students are not taught critical thinking or how to slow down and think about things, they are taught how to follow protocols and guidelines, extsensive memorisation, how to make split second decisions, etc.
At the end of the day, medicine is based around a culture of conformity and a heirachy, cohesion is very much valued, to the point we commonly see people reject sound scientific evidence in favour of conforming the culture’s majority opinion. We very much saw it with BPS, when a few very powerful people at the top of the medical heirarchy completely convinced most practitioners ME is psychsomatic. There’s a reason established norms stick around for decades in the medical system, long after scientific evidence has wholly disproven them
Conflicts of Interest
I can’t believe a portion of the people publishing studies on #MECFS actively think it is the same thing as burnout. How uninformed must you be… And of course governments choose to fund them because their “research” fits the narrative that pwME are lazy. Utter Delusion.
My view on bias is that patients are less likely to introduce bias than academics. Patients have a single interest – finding out the mechanism of their illness and how to treat it – not a conflict of interest. In contrast, academics have conflicting interests in personal advancement through publications, grants, fees from insurance companies, promotion with salary enhancements, honours from royalty and goodness knows what! Patients may make unwise decisions about backing research through ignorance of biology but that is a different issue (and academics do that too). Source Jonathan Edwards
Career Intersts
Science has to stop being about citations, prestige, and career.
But about openness, humility, and collaboration.
We need to stop rewarding people who care more about making a name for themselves and advancing career interests than the rigour of their work.
CC: Simon Wessely, Micheal Sharpe