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Steroids are lipophilic and the tissues that generate them are highly vascularised. They enter blood stream very rapidly. There are potentially other less likely reasons than we point to in abstract. I think our use of the word dysregulation could have been better. Perhaps "altered regulation...

Yes, we're in contact with the journal about it, the figure order is all messed up and unaligned with the legends, the figure number and legend are correct but all the images are on the wrong spots. They messed it up initially, we fixed this issue in proofs and they appear to have published the...

Here is a link to a diagram that shows the pathway, in blue are the enzymes: https://www.nature.com/articles/s41435-021-00139-3/figures/1 Note how the same enzyme is used for the production of different steroids. It's like a crosshatch of a few enzymes allows you to produce many more steroids...

Are you asking if this is apparent in all ME/CFS patients? When I say "ME/CFS cohort", I'm talking about the cohort in the study. No, we didn't look at this in thousands to get a sufficient scale to be widely representative of most people with ME/CFS. We have a separate study we've been trying...

Seems like this paper wasn't well received. It was a small study, not a world changer. No indication of low or high steroids in ME/CFS patients. Limitations as the data was older (as pointed out by Wiggle). Something is unusual about the steroid pathway. All these steroids are governed by a...

Do the authors think you can acquire ME/CFS by swimming too much?

We do a number of studies on blood samples, we capture plasma and PBMCs, sometimes we captures serum and RBCs. What type of markers do you guys think should be looked at? Or what type of assays should be performed on these biomarkers? You can even suggest combinations. Specific names should be...

Hip replacement idea is clever, I wonder if that would be possible.

Yeah this was my fear and I hadn't even thought 10 samples, that's just not something worth doing now. If the VH3-30 was to become accepted as a clear part of the disease mechanism then maybe someone does the bone marrow study but this is a project on the scale of DECODE in terms of cost and...

It's common for symptoms to exacerbate across many diseases. It's very likely the progesterone+estrogen drop that seems to create the problem, typically same symptoms flare at end of pregnancy, during perimenopause and menopause. You don't get the same sizeable drops while on OCP because the...

I don't think so, I'll ask some questions about their availability and quality. It would be nice to try clear up if the cell themselves are developing abnormally or if they're responding normally in the context of their environment. Though I'm not sure a bone marrow study would entirely answer...

Posts moved from Deep Sequencing of BCR Heavy Chain Repertoires in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Ryback et al Bone marrow studies might be a good future target, there is one person I know of with bone marrow samples from ME/CFS patients but I'm unsure of what...

I think I can understand what it's like to not be understood by parents and I've had bouts of mental health issues that at their worst kept me practically housebound for half a year. That's about the extent I can empathize but what you describe is well beyond that and I really don't know what...

Yeah potentially, we certainly use a bit of the understanding in this research to formulate some theories on ME/CFS. The Dubbo study curves really seem to mirror Long COVID. Of those infected that had persisting symptoms beyond a month there seemed to be a phenomenon where 50% of the cohort...

I thought it was refreshing to read about ME/CFS from a different perspective and even in a less formulaic way. It made the writing feel worth reading and considering. The actual name of this disease has always been a mess, in some ways the name belies the history of messes that has led to...

Potentially yes. I think there's also a backlog of severe trauma research (car accidents and burns) where they've analysed early hospital visits to determine why some recover close to baseline function relatively quickly while others take a long time or never do. Typically the more...

I don't have enough experience with these surveys and scales to speak negatively or positively. The picture being painted in this thread about them is quite poor though. I am taking note of what people say, I haven't explicitly stated that here but I'll certainly have more consideration of...

There are datasets for hospitalized COVID patients, that's the best opportunity to find samples during the acute phase you could analyse and track their outcome. Someone would surely be doing this.

This somewhat fits with our recent Nature paper where we saw lipoprotein profiles in the ME/CFS cohort of the UK Biobank typically associated with elevated CVD risk.

PEM should be the primary focus of the disease diagnosis, treatment and research. I think understanding that is where you start. Simply because patients are at a certain level and then they are far worse, something happened that isn't typical. Only thing better would be able to study patients...