Developing a blood cell-based diagnostic test for ME/CFS using peripheral blood mononuclear cells, 2023, Xu, Morten et al

Morten speaking about the study, apparently, here Saturday October 21.

https://www.ilads.org/ilads-conference/2023-annual-conference-boston/

It's an ILADS event.

 

First ever diagnostic test for chronic fatigue syndrome sparks hope - Advanced Science News

https://www.advancedsciencenews.com...est-for-chronic-fatigue-syndrome-sparks-hope/

 

I appreciate the reply. Please understand that I do not criticise your expertise nor your intentions. I apologise if it sounded like I was accusing you of herding people into things; I instead meant to say that comments in isolation (as they will appear to a casual reader) will likely be considered in isolation.

I understand your long-running and thoughtful contributions to the forum and I appreciate them. The point was mostly just that not everybody who stumbles upon this will have the benefit of having read all of those contributions, nor in order. So each time a point is raised from a position of expertise, it needs to be communicated with some detail to avoid people misconstruing it.

In any case I'm not trying to lecture or rant away here, just clarify my previous comment's intention. I hope it comes across well. As always I appreciate and value our interactions and learn something from your wealth of experience each time.

I'm particularly glad that this has sparked some great discussion around not only the value of a diagnostic market but the utility of its mechanistic relevance. Needed to be addressed I think.

I think another thing to mention here is that clinical judgement *is* lacking in so many cases where clinicians are not properly informed about the disease, which is much of where my contention is coming from. So that's why I'm not sold on clinical judgement as a counterargument. With better education and policy, sure.

As a general comment I will also defend the apparent lack of impact of much modern science when compared with work done 50 years ago by saying that I think all of the low hanging fruit has long been exhausted. I do not mean this in a snarky way. It's just harder to find transformationally-new things when so much foundational work has already been done and done so well.

I should also say that my entire research philosophy and efforts are centred around mechanism, so I get it. And a biomarker associated with mechanism is undeniably so much more useful than one without. I'm just thinking in terms of a potentially more rapidly reachable stopgap to reduce the skepticism that people face even if only partial. Knowing what people go through with dismissal or disbelief absolutely crushes my heart. I've experienced it myself, so I understand it completely. We need to start ending it asap. So I remain open minded to all efforts to do so even if 90+% of my own work is probably more concerned with mechanism than diagnostics.

This turned into a disjointed stream of consciousness typed from the lab bench but I hope it makes the contention clear.

Best, dan

 

Slides from a recent presentation by Prof Morten, the second half is mostly about this work.

Near the end there is a slide about their next step on this project:

This seems like a much more sensible approach than what they did in the paper. Good to see them trying to replicate in multiple centres, though I'm not sure how valuable this is compared to just testing more samples instead (or 40 different samples in each centre). I suspect the results from this paper won't replicate, but maybe they'll find something useful all the same.

 

Good point e.g. those who participated in the Nath NIH intramural study (lets forget Walitt!) could be tested to see whether they were considered positive (for ME/CFS) on the basis of this (Raman spectroscopy) "test" - ditto Decode ME participants.