[bertylicious]

I'm pretty sure there is no diagnostic test for ME/CFS. What are you referring to?

Also I don't understand how semaglutide did help you while you're at the same time part of a minority risk group with a hypersensitivity to it. Isn't that a contradiction?

[coryrc]

Doesn't it just mean GP needs to take less?

[cjbgkagh]

Yes, sensitivity at over 10x normal, so I just took 10x less. I’m taking a more normal dose now after 4 years and I believe I have become desensitized as my body normalized. Other seemingly unrelated aspects also normalized such as thyroid, testosterone, and neutrophils also improved. I was taking medication for these and have been able to stop taking them. I am assuming a lack of GLP1-As to begin with caused the receptors become more sensitive to it. When I started there was no anecdotal information available just theory, in the 4 years since many people have now had very similar experiences including hypersensitivity. (https://www.healthrising.org/blog/2025/11/03/glp-1-agonist-m...)

[cjbgkagh]

There are now a number of very definitive tests, most related to immune system profiling. Prof. Ron Davis has some good research and has shown that plasma from someone with ME/CFS when combined with normal red blood cells will greatly diminish the ability for red blood cells to handle stress (pumping out salt).

[deng]

https://link.springer.com/article/10.1186/s12967-025-07203-w

[pablobaz]

I think I would need to see testing on a control group of housebound patients with other conditions to believe this. It's easy for ME testing to pick up markers for being housebound and limited exercise for an extended period of time.

[chrisldgk]

You sound exactly like the tens of doctors that misdiagnosed my aunt (who passed away through euthanasia after her symptoms got too bad to live with late last year).

I understand that the symptoms of ME/CFS might be similar to being obese/depressed or housebound, but the problem is that doctors often jump to that conclusion too quickly and don’t take efforts to diagnose ME/CFS leading to situations like my aunt’s. She was also obese and depressed and has been struggling with those symptoms for about 30 years and has constantly been misdiagnosed the entire time because doctors didn’t figure out that those were symptoms of ME/CFS and not two unrelated conditions coming from two different diagnoses.

Thanks to long-covid putting the symptoms of ME/CFS on the forefront lately, there’s finally been some much needed research into the disease and people like my aunt finally get the diagnosis they should have been getting many years ago.

[pablobaz]

Sorry to hear about your aunt. My condolences. I think your misinterpreted my intent, I would dearly love a good diagnostic test for ME/CFS and agree research has been hugely underfunded.

I have followed closely the research for many years and there has been false promise of good diagnostic tests previously. What I'm arguing for is that we need a test that is specific for ME/CFS. E.g. it will test positive for a patient with ME/CFS regardless of they are obese or not, but more importantly it will not test positive for everyone who is obese. This is known as the sensitivity and specificity of the test.

What I've seen in the past is some previous ME/CFS tests show positive for groups with related symptoms but who don't have ME/CFS. This then becomes a worthless diagnostic tool. For example this would not have helped your aunt.

Hope this explains my thoughts!

[chrisldgk]

Reading this back, I did entirely misinterpret your comment and may have acted on that a bit more emotionally than I would like to admit.

Thank you for clarifying and I wholeheartedly agree.

[empiricus]

looks interesting, but has the classic "40 patients".

[throwaway2037]

What would be enough? 400 patients, 4000, 40k, 400k, 4M?

[igor47]

Well, reading the study, I'm not sure more patients could rescue it from methodological bias. They assumed the premise basically -- we should find a biomarker, which is kind of what this thread is discussing. Then they went trawling for biomarker in a sea of millions of biomarkers. They did this by training an model that produced the desired result, using a grid search for hyper parameters that even further expanded the available degrees of freedom here beyond what they had from the biology. No pre-registration; There are millions of places where the researchers could have made a different decision -- would they still have gotten a publishable result? Oh plus the authors mostly work for the company whose data they use, which is hoping to sell a diagnostic test.

I'm giving you a thorough response because I'm detecting a cavalier anti scientism which I think is sadly becoming more common. This stuff is hard; are you sure you understand it enough to have an informed opinion?