Myalgic Encephalomyelitis is clear to see in the blood

[Oliver3]

I agree a spinal tap is not sufficient.
The vast majority have a myriad of problems not just limited to thr brain.
I.e vascular issues, , muscle issues, immune deficiencies, hormonal issues not directly related to the brain ir in feedback loops, collagen issues, leaky gut issues. You really can't say this disease is exclusive to the brain

 

[Wishful]

You really can't say this disease is exclusive to the brain

No, but many (most? all?) of the symptoms could be due to brain cells not doing their job properly. Heart failure doesn't kill you; it's the failure of the brain due to lack of blood flow that ends your life. Lack of blood flow, or low oxygen, would be a biomarker for that, but that's far easier to detect than the failure of possibly just a few brain cells whose dysfunction causes serious symptoms elsewhere in the body.

I was going to say "effects" rather than "symptoms", but so far they haven't found any clear markers of physical effects in the body. Some PWME can't get out of bed, but there's no apparent physical cause (muscle metabolism or whatever), but that doesn't rule out a malfunction in the control circuitry in the brain. We don't have the technology to readily identify that sort of malfunction, and it probably wouldn't show up in spinal fluid. One transistor failing in a CPU can crash your computer, but measuring the supply voltage or current isn't going to reveal that (one transistor out of billions, switching at GHz frequency). The marker is there, it's just buried in too much noise to be practical to dig out.

So yes, there might be some physical measurements of collagen, muscles, capillaries, etc, that are due to ME, but it's buried in too much noise and too far removed from the core dysfunction to be useful.

That's why I favour the black box approach: vary some inputs and hopefully find something that causes a reliable response in ME symptoms. If someone had studied my body when I had a reliable way (cuminaldehyde) to switch my PEM off, that might have revealed something. Dynamic abnormalities are much easier to identify than static ones, especially when they are weak abnormalities in a lot of noise, and what's "normal" varies a lot between individuals.

 

[Oliver3]

No, but many (most? all?) of the symptoms could be due to brain cells not doing their job properly. Heart failure doesn't kill you; it's the failure of the brain due to lack of blood flow that ends your life. Lack of blood flow, or low oxygen, would be a biomarker for that, but that's far easier to detect than the failure of possibly just a few brain cells whose dysfunction causes serious symptoms elsewhere in the body.

I was going to say "effects" rather than "symptoms", but so far they haven't found any clear markers of physical effects in the body. Some PWME can't get out of bed, but there's no apparent physical cause (muscle metabolism or whatever), but that doesn't rule out a malfunction in the control circuitry in the brain. We don't have the technology to readily identify that sort of malfunction, and it probably wouldn't show up in spinal fluid. One transistor failing in a CPU can crash your computer, but measuring the supply voltage or current isn't going to reveal that (one transistor out of billions, switching at GHz frequency). The marker is there, it's just buried in too much noise to be practical to dig out.

So yes, there might be some physical measurements of collagen, muscles, capillaries, etc, that are due to ME, but it's buried in too much noise and too far removed from the core dysfunction to be useful.

That's why I favour the black box approach: vary some inputs and hopefully find something that causes a reliable response in ME symptoms. If someone had studied my body when I had a reliable way (cuminaldehyde) to switch my PEM off, that might have revealed something. Dynamic abnormalities are much easier to identify than static ones, especially when they are weak abnormalities in a lot of noise, and what's "normal" varies a lot between individuals.

They're literally looking at muscle metabolism at the moment.
We are built different.
Referring to our bodies as simple machines doesn't cut it as we're massively complex. Is there just one computer in the human body. I doubt that very much. It's a system that's talks to itself all around the body.
Fir example, we don't understand the gut microbiology, the immune system,
Dynamic abnormalities? I don't think it's that simple in m.e.
The core dysfunction is eds anyway but that's going to show up differently in everyone

 

[cfs since 1998]

No, but many (most? all?) of the symptoms could be due to brain cells not doing their job properly. Heart failure doesn't kill you; it's the failure of the brain due to lack of blood flow that ends your life. Lack of blood flow, or low oxygen, would be a biomarker for that, but that's far easier to detect than the failure of possibly just a few brain cells whose dysfunction causes serious symptoms elsewhere in the body.

Multiple groups have described endothelial dysfunction, neurovascular dysregulation, impaired peripheral oxygen extraction, etc. These things happen in the body not the brain. The only way your conclusion can be supported is by cherry-picking and ignoring the evidence that exists.

 

[Wishful]

The only way your conclusion can be supported is by cherry-picking and ignoring the evidence that exists.

No, as Oliver3 pointed out, we're a mass of interconnected systems. One malfunction in one subsystem can affect others, which affect others, for who knows how many levels.

As for multiple groups describing those various abnormalities, I haven't seen any really definitive evidence, at least nothing along the lines of "90% of PWME have capillaries that are 30% narrower than expected for their bodies". Studies with small cohorts and results that just barely exceed a probability threshold aren't convincing me. There's a lot of pressure to publish positive findings. I think it's a matter of perspective: if you are desperately wanting some sign of progress, you consider scant evidence that supports your beliefs as strong, while a skeptic considers it weak. Even if you gathered a panel of world experts to judge the evidence, they'd probably argue for a long time about it and maybe reach a we're not sure" conclusion.

I'm fairly sure than none of those studies provides strong evidence of those small abnormalities being the cause of a symptom rather than an effect of some malfunction elsewhere in the body (or brain), possibly far removed from the root cause.

Claiming that the weak evidence that supports something you want to believe (that ME is related to muscle or endothelial or mitochondrial dysfunction) is valid is cherry-picking too.