Although this forum is highly focused on the nonsense of the BPS brigade, I submit that at this point what I call BioBS, or the low quality ME/CFS & "Long Covid" research is much worse overall for the patient community. Why? 1. Although historically BPS had a lot of "scientific" backing, it seems like support for BPS has lost steam. Twenty years ago, this may have not have been the case. 2. BPS research typically doesn't divert a lot of funding, because they don't really do expensive in-depth biomedical research. 3. By contrast Bio BS does burn through a lot of money. See here $800,000 for a second rapamycin study https://www.s4me.info/threads/rapamune-rapamycin-mtor.5490/#post-563570 4. Some BioBSers tends to pursue agenda based research to prove a single theory (e.g. viral persistence), which diverts funding from general exploratory research. 5. BioBS'ers tend to have a higher social media presence, and very unfortunately, modern science journalists tend to rely on Twitter as a definitive source of identifying researchers with "scientific expertise". So they amplify this stuff rather than getting information from researchers who do not post on Twitter/X. 6. I consider a lot of the new "Long Covid" reseachers to be in the BioBS camp. Why? Because it's pretty obvious to me that they are investigating covid-triggered ME/CFS, but yet a lot of these researchers don't even acknowledge ME/CFS, and haven't read the ME/CFS literature. This is a problem because many of these researchers are simply re-inventing the wheel. Re-inventing the wheel is bad because it diverts funding that could be spent on new and original research. 7. The other group that I consider to be in BioBS group are researchers who have been in the ME/CFS game for a long time but haven't really made any useful contribution or are pedaling crud like this https://www.s4me.info/threads/ident...atment-with-a-nebulized-2023-gil-et-al.36702/ If you find yourself in a hole, stop digging. Usually past performance can indicate future success/productivity. Prove me wrong/change my mind!
I think they are a major problem, but they aren’t worse than BPS, for the simple reason BPS theories have led to countless human rights abuses, lives destroyed, unnecessary deaths, resulting from inhumane policies with the assumption sick people aren’t really sick. The bioBS crowd atleast advocates for treating patients humanely and taking them seriously.
Two different harms: one harms patients directly, the other harms research, which delays actual help for patients. The BPS crowd doesn't affect me directly. The wasteful research projects annoy me.
I would agree that some of the low quality studies we see — pushing supplements and complementary medicine as treatment; focus on unevidenced hypotheses — is doing us harm in that they trivialise the illness and they also make dubious claims. On the latter point, I think of the example of all the microclot work in LC. it has been done by, or in collaboration with, only one research group, and is, to my understanding, not replicated. It seems like mainstream medicine is highly suspicious of it. In a way I am not suprised Garner and co have taken issue with how it has been presented.
I think the perspective probably looks different on each side of the Atlantic. BPS is still very powerful in parts of Europe, and they're not giving up, digging their heels in with Long Covid as well as ME. There has been far less bio research in Europe than in the USA, and at least some of it is well done, eg DecodeME and the UK ME biobank. In the USA, I think probably because of the different medical system, there has been far less BPS, instead doctors encourage experimentation with all sorts of drugs, and fail to research them properly.
I don't think they can really be compared since the process of biomedical research is basically a brute force thing where all the things have to be thoroughly explored. No one knows where the answer until someone manages to stumble in the right place, that takes a huge amount of poking around aimlessly. Barry Marshall's research on peptic ulcers was definitely considered very low quality by his peers. You never know what you're going to find, and it's a messy process. Every disease has loads of garbage quality biomedical research, probably most of it. The bigger problem with psychosomatic stuff is that it's entirely useless, has nothing to do with the problem, and only exists to serve itself, not the patients. It plays the exact same role religion did in delaying the progress of civilization. The only reason why bad biomedical research does harm is because it gets used to push psychosomatic BS. Remove the psychosomatic BS and most of the problem is gone. We can look at examples like Alzheimer's where bad biomedical research has only had one consequence: delaying breakthroughs. They are simply different problems entirely. Obviously we all only want high quality biomedical research, but even generally speaking, it's the exception rather than the norm. Meanwhile high quality biopsychosocial research is literally not a thing. Biomedical breakthroughs have been some of the most impactful in the history of our species, whereas there is not a single biopsychosocial breakthrough. None. Whatsoever. And there never will be. Making it all that much worse.
I'm halfway through reading the latest T cell dysfunction paper in PNAS. Comparing the levels of sophistication between the two "schools" I can't help thinking of the meme: "every household has two cats" ... https://www.tiktok.com/@freyathesiberian/video/7441715042493467959
I don't see the point of the comparison, sloppy science and bad experts should be questioned no matter who or what the focus is.
They are both bad in different ways. BPS approach has had a big impact on research funding and attitudes of clinicians and public. We could be much farther along in our understanding of the disease if BPS hadn’t had so much influence. I’m more concerned about NIH having such a small budget than a bio “bs” study taking a lot of funds. And the small budget can be traced back to BPS attitude. Even if all the bio projects undertaken were really well designed experiments, there wouldn’t be enough money to even move knowledge forward at a snail’s pace. But yes, the “BioBS” is bad, too. I’m frustrated by the lack of rigorous studies for the symptomatic treatments often offered to patients that may or may not even make a difference (e.g. abilify, LDN). It would be so useful to rule out the ones that don’t work so we don’t have to constantly revive them over and over.
Don’t disagree with this. But the issue (maybe my issue) is that there is basically zero support for BPS stuff from the ME/CFS “community”. By contrast there appears to be significant support for the current cohort of Long Covid researchers despite the fact for the most part, most/many of them are in over their heads. For example, in what other world would a “researcher” whose main accomplishment is promoting pseudoscience (the Marsh*ll protocol), be appointed the SCIENCE director of a Long Covid clinic at a prestigious US hospital? https://www.s4me.info/threads/core-...conditions-clinic-at-mt-sinai-hospital.40605/ If they had appointed Simon Wessley as the director, there would be threads on here with hundreds of posts. However the person they appointed has the veneer of expertise because she doesn’t promote psycho explanations of ME/CFS, and “believes” the patients. The treatments they offer there are non-evidenced, same as PACE, but they received a lot of positive press from the Sick Times, Hannah Davis, etc. The money spent on this Center would have been better spent on funding real research.
One problem is that such studies won't be able to tell us how one of us as an individual will respond to one of those treatments. Which treatment has provided a positive response from the most PWME, and what is that success rate? Does any treatment have a success rate higher than 10%? 5%? .5%? I don't even know what the answer might be. Likewise, for every treatment that fails for most people, what percentage might experience real benefits? I hadn't heard anyone suggest cumin as a PEM treatment, but not trying it, or ignoring a benefit because "everyone knows it doesn't work" would have prevented me from very real benefits from it. Aside from LDN, none of the treatments other people have recommended worked for me. Unless a treatment shows significant benefits for a significant fraction of PWME, I don't think it deserves a significant fraction of the limited research funding. I think the best it could conclude is that "if you have this constellation of symptoms, this treatment is slightly more likely to be effective for you than something selected completely at random". We don't need an expensive study to accomplish that. You get the same info by reading these forums.
