It seems to me that, at least lately, very few (if any) biomedical research articles on ME/CFS have been published. I am not sure what to put it down to other than 1) investigators were not able to collect biological samples from ME/CFS patients in 2020 and 2021 because of the pandemic and 2) ME/CFS researchers have been focusing on long Covid. Am I the only one getting this impression?
Long Covid papers have been pretty much outpacing ME/CFS at a rate of 4:1 all year. ME/CFS hasn't received any more funding but Long Covid sure has. Some of the big famous researchers are now working in Long Covid too so I think its fair to say some of the small number of researchers who previously worked on ME/CFS research are now more focussed on Long Covid.
Yes, I would bet some in our community predicted that researchers would move to researching COVID. If they could include pwME as a comparison group that would help.
I don't know as I'm unsure of what the normal level would be. Who are the 'regulars' we might expect to see - whether that is names or departments or types of areas and numbers of projects within them? It is an important question as there are lots of things that the recent history could have caused above this - not least I imagine there is a heck of a lot of dark stuff (along the lines of the FOIs we saw for emails re the guidelines) going on due to the panic of 'losing ME/CFS' which then got made even worse (as exampled by people who never cared about ME/CFS writing said emails in FOIs just because they would be 'connected to the long covid guidelines') by the gold-fever some depts saw over LC. I imagine that could affect funding, but also permission or things that could deter or get in the way of researchers even applying for funding - so being able to check on this is important. A few other factors might be: weren't a lot of labs used for things like the covid swab testing, and perhaps got diverted into being used for things for the pandemic - so access to equipment or maybe even the people themselves - given biomedical research actually does science (whereas BPS didn't need to worry they'd have had usefulness for this) the putting PEM/PESE front and centre on proper ME/CFS now meaning that making sure you use the right criteria (ICC etc but also things like follow-up points such as 135days and measures) - and that being agree upon - gained more prominence. Recruiting needed a bit more thought and a lot harder I guess than for BPS (with their 'fatigue clinics' whoever is in them), given how many might well have ME/CFS its just that their diagnosis didn't check for PEM and fatigue clinics aren't a useful place to recruit from. I can't help but think the heel-dragging on proper categorisation of the illness by GPs on SnoMed is to undermine this alongside the other agendas Projects in the works perhaps just take a bit more time - particularly if you want to report on full follow-up period (e.g. a year) rather than prelim results at e.g. 3months.
Someone on Reddit looked at number of publications per year and their research indicates a significant increase in 2020 and 2021, with what looks to be a return to previous levels this year. Code: https://www.reddit.com/r/cfs/comments/xdd8m6/update_evolution_of_research_on_mecfs_details_in/
for 2020 we have threads on 123 biomedical and 53 bps research papers for 2021 135 40 (using tags) haven't looked at 2022 (not tagged)
A Pubmed search for "myalgic encephalomyelitis" or "chronic fatigue syndrome" brings up a little graph of results by year: 2019: 339 2020: 329 2021: 453 2022: 545 The year's not even over and 20% more papers mention ME/CFS than and previous year. But one could argue this represents increased awareness or discussion, not increased research. We're counting papers that merely mention ME/CFS, regardless of whether it's in passing or the subject of the paper. Fortunately, we can narrow results by title. Here's the results for "myalgic encephalomyelitis"[Title] OR "chronic fatigue syndrome"[Title] : 2019: 205 2020: 171 2021: 221 2022: 172 By this metric, we're not doing too bad considering the year's not done, but also, the rate of papers whose title contains ME/CFS has plateaued since 2010.
Other than the National Institutes of Health Intra & Extramural ME/CFS programmes has there been any substantial funding of biomed research that would have been published in the last four years ? Most med research publication is busywork - keeping the engines running without achieving much, or at best achieving small steps that might accumulate into something significant over time, and limited focus research where there's little clue as to what to look for is often especially unrewarding. Breakthroughs may as likely come from areas wholly unrelated to research that is focused solely on ME/CFS, however that said the depth of the ongoing NIH Intramural Study on ME/CFS perhaps gives some exceptional potential for results. The NIH and and DecodeME represent depth and scale not seen elsewhere and my view is that until we see both of these completed anything else, unless we are very lucky, will be window dressing. Grant chasing will of course mean that COVID will be attached to any and every proposal where it can be jammed in, and again just my personal view but I don't think there any any great minds to have been diverted from work on ME/CFS to start chasing COVID White Rabbits.
A lot of those are BS psychosocial, though. Probably most, from the papers discussed on here. In fact, most of the papers published on the topic are still garbage, biomedical or otherwise. Medical science has an extreme version of the asymmetry of bullshit, it's so trivial to churn out nonsense compared to real science. Regardless of numbers, the quality is not increasing because it's being submerged in a tsunami of cheap BPS pseudoscience taking all the funding. I think that generally speaking we are in a worse spot than before. The only relevant factor is the fact that LC is so enormous that it could still lead to a reversal. But it seems clear that medicine has effectively chosen pseudoscience and doing even more harm than before because they can't handle the truth. Or maybe the NIH RECOVER program will publish good stuff, but frankly I'm not expecting it at this point. It's clear that they are OK with wasting over a billion with nothing to show for it, if it validates the fact that decades of harm and negligence did not happen.
I'm not gonna disagree with you about that. We're seeing an increasing quantity of research, but what really matters is quality. One large study with careful methodology will do more than 100 junk science papers.
My impression is that the quality of the average paper has increased a lot over the last 10 years. But the recent paucity of papers coming out is noticable. Unutmaz has something to publish, and the NIH studies should also come out soon. Then next summer DecodeME. I'm not sure what Unutmaz has found but the NIH study and DecodeME could be huge in terms of impact.
Hopefully it's just a brief pause. I hope the quality of upcoming will increase. The NIH study, Decode, and RECOVER treatment trials have me optimistic.
Yea but we have technology like GWAS now and that stuff's only going to get cheaper/more accessible. So while yesterday it was difficult to see ways in [understand ME/CFS] that statement is less credible today. Yea that may bring credible research. Yea it's too easy to publish crap research and get it incorporated as treatments. Sadly I share those concerns which is why the ME/CFS community should try to build contacts within the long Covid community - warn them about the problem researchers moving across from ME/CFS.
Hi @strategist I've been wondering when the NIH study would come out. It's the deep-dive one on ME you're talking about, isn't it? It seems to have taken so much longer than planned, but then the Pandemic did mess things up, to say the very least. Do you know when it is slated to come out? Thanks.
