How does that make sense? If these people with "the same ME/CFS as those in DecodeME" end up in chronic pain cohort then shouldn't the chronic pain study find also the other genes from DecodeME?
Sorry, I was refering to pre-clinical research etc, I should have been clearer. They indeed had to invest millions to conduct a phase 2 study.
Of course it is a meaningful argument, because the authors provide no arguments for subgroups or evidence for it. You either have to have a sufficient...
I think your cost function might not be taking into account that it's not Fluge and Mella you're talking about, but a person, who by his own accounts has absolutley no idea of what he is doing and has extremely likely caused suffering and possibly death, without anything to show for it.
That...
I think most doctors globally will agree that there is no evidence for inflammation in ME/CFS and extremely sensible arguments have put forward why that is the case, see for instance...
Yes, how can we help?
Maybe there's also some things the authors can't ask directly for, because it then creates circular arguments, but maybe some SequenceME specific fundraising intitatives (gofundme style) or petitions (change.org style) could highlight the demand and backing on the...
I'm not too sure about that. The sources can come from the same public domain (say a public preprint repository) and sometimes it does it, some other times it'll just repetivitely hallucinate "sensibly". I'd place larger bets on it being an LLM property when run with insufficient verification.
I was always suprised at how bad it was at finding sources even if you told it the exact name and address of the source it still managed to halicunate an entirely different source that was in some way "sensible". I'm sure that's the easiest thing to fix and probably should sensibly be even fixed...
The Fluge and Mella Dara pilot study was public announced in 2022 and also started at around that time point. On S4ME there are mentions of anti-CD38 discussion going back to ~2000. He just seems to pick up whatever is popular in the internet, here are some of his tweets:
I think by this point...
He is the opposite of a good data source. Even to a layman it becomes instantly apparent that he has absolutely no idea what he is doing, that includes no idea about any drugs he uses and even dosages. I don't know those things either, but I certainly would want my doctor to. He is a collection...
Yes, the only way to get any meaningful data was probably doing something like what DecodeME did. So there's no point in coming off defensive.
But if they want to complain about that data being unreliable due to patients not seeing a clinican as part of the study I think there is now a pretty...
I think Germany may be able to do better. They have a few clinics and biobanks that seem to be somewhat ok at handing out diagnosis (but I think the data might inevitably still include a large referal bias) and if they'd run a GWAS you could split the data into the cohorts of clinicans and...
One couldn't recruit via health professionals or confirmed diagnosis because there are no trained clinicians dedicated to ME/CFS and if you'd only have a few of them then you'd struggle with sufficient sample sizes and confounding factors will be introduced by how those clinicians handle things...
What data are you inputting, because I think most of the data besides DecodeME (for example GWAS data from UK biobank) might be entirely unreliable rather than "high score confidence"?
There's one on the mathematical side of things, that even has started getting into ME/CFS research because his daughter has ME/CFS. From what I remember there's also already ongoing genetic work in Austria so I don't think anything has to be set up per se.
Certainly, especially when the FND study is based on cohorts that for ME/CFS are already known to be no good (such as UK Biobank etc). I'm not questioning the much higher quality of DecodeME. However, I don't think this should affect the argument that you can sporadically pick up genes, due to...
I'm I'm not misremembering I think the NK cell findings here were somewhat related to illness duration (I'm not actually sure if anyone checked whether the correlation between response and NK count was stronger than response and illness duration), which would make that quite possible (people...
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