Metabolic features and regulation of the healing cycle—A new model for chronic disease pathogenesis and treatment, Robert K Naviaux, 2018

Is Fibroscan a "standard"? (It seems so. But also, it seems you have to pay for it yourself, yes?) Why is a Fibroscan never performed?

 

Here it is reserved for thise whose test results indicate issues - to check extent of damage. You do mot have a hope in hell of one on the NHS if tests are within nirmal ranges and they are not that prevalent privately in our location.

It seems to be that there is no clinical significance unless informing treatment options here.

 

They will misuse it.

 

To the best of my knowledge, Fibroscan is the second best alternative for evaluating Liver fibrosis after Liver Biopsy which is the gold standard for assessing Liver function. Liver Biopsy may have complications and therefore it is not easy to make.

In other words, you cannot rule out Liver Disease unless you have Liver biopsy from multiple sites of the Liver.

 

I think enough patients have had enough tests to supply us with a pattern. (That's not to say that people are not being evaluated poorly in many individual cases.) It's not possible to say with 100% certainty there is no actual damage done until we are medically omniscient. But we have to be careful with that sort of thinking not to chase after things that are implausible or will be at best peripheral. Remember that it's not possible to rule out thought processes as the cause of ME - or part of the causality of really any acquired Disease - as well; it's just really foolish to think that way based on the picture we have in front of us.

These are certainly valid considerations that can be raised when trying to evaluate and communicate the disease burden. Certainly ME --> being sedentary --> greater risk of diabetes is plausible (I don't know epidemiology on this, though). But it doesn't shed light on the particular disease process of ME; we already know it makes people sedentary. (And any damage caused by diabetes can be explained by the particular disease process of diabetes, it doesn't tell us anything further about ME).

This is what team BPS's logic looks like to you and I - rendered simplistically
-No findings of damage/abnormal laboratory results
-therefore is or is likely to be psychogenic/psychoperpetuated

-The first point is factually right based on tests we have. Regarding things that can be called damage, I think we can test for that pretty reliably. (Obviously there are oodles of tests that can be developed to spot heretofore unknown abnormalities that might tell us something useful.) So why argue with them on their strong point? If we bluff and bluster to try to bludgeon them here, what does that do to our credibility when trying to influence scientist/policymakers/public opinion? Mightn't it also mislead our scientific investigations into cause and treatment?
-The second point is a logically unsound leap from the first. Very easy to argue against. There are also a number of reasons to think that psychological etiology is implausible, and the evidence produced in support of it is unreliable and might actually be evidence against it. I say let's argue here.

 

I think we can rule out thought processes as a cause of disease. Fruit flies get disease, bacteria get disease, plants get disease.

I believe my diabetes was caused by years of dysautonomia which was part of my ME.

I am not convinced that all these negative tests show nothing is wrong. Tests are not as straightforward as people think, very few give a yes/ no answer, most normal ranges are based on statistics, they all need interpreted and many are not direct measures.

The way ME works, I often wonder if we get a negative result because our bodies are too tired to produce what is being tested for, rather than because everything is healthy. I have read reports of people having tilt table testing where medical staff were amazed that the patient had not fainted despite the low blood pressure, so counting how often a patient faints would not pick up the seriousness of what was happening.

We may have plenty of T4 but if we cannot change it to T3 it is not the healthy result it seems.

 

Certainly not! The way I take it is that, whatever it is that is going on, our bodies are generally able to maintain the 'basics'. It's bizarre that patients who are so severe that they can barely move and suffer horrible pain and discomfort can remain medically stable for decades with no notable disturbances to tests that gauge basic organ functioning. This doesn't mean nothing's wrong, it just means we have to be more clever in figuring out what could cause this picture.

 

This is interesting.

 

Dogs can't think at the same level of us humans, so they don't come up with stupid ideas such as thoughts and feelings causing persistent disabling physical symtoms. Maybe dogs are smarter than humans in certain ways.

 

In defense of humans, I must say that the ability to make errors enables us to learn what works and to find the right middle ground between extremes.

In the context of claims of psychogenic illness causation I wonder whether that would mean that we just take a long time to learn certain lessons, or that this idea persists because it's useful in particular ways even if untrue.

Looking at how long homeopathy has endured, maybe it's a little bit of both?

 

Merged thread

UCSD Researcher Suggests Chronic Illness Could Be Breakdown in Normal Healing

“The healing process is a dynamic circle that starts with injury and ends with recovery. The molecular features of this process are universal,” Naviaux said. “Emerging evidence shows that most chronic illnesses are caused by the biological reaction to an injury, not the initial injury or the agent of the injury. The illness occurs because the body is unable to complete the healing process.”

...

“Once the triggers of a chronic injury have been identified and removed, and ongoing symptoms treated, we need to think about fixing the underlying issue of impaired healing,” Naviaux said. “By shifting the focus away from the initial causes to the metabolic factors and signaling pathways that maintain chronic illness, we can find new ways to not only end chronic illness but prevent it.”

 

Interesting but can this explain the relapsing and remitting form of ME?

 

No medical expertise, but many processes are inherently oscillatory in nature. It may be a healing mechanism is striving to operate, but then maybe frustrated by some opposing mechanism. Not all systems flat line to an unvarying stable state, some stabilise to an oscillatory state, with opposing influences cyclically gaining advantage over the other. But like I say, 100% conjecture.

 

Although taking on board your point and perhaps having equal ignorance on these issues, I would question if any biological processes would have the degree of fluctuation, day to day, month to month, year to year or decade to decade that you can see in some people with ME. I would argue that if ME is a disruption of the normal healing process you still need an ongoing disruptive factor to explain this degree of variation. So at best this can only be a partial explanation.

 

Whoa, my bullshitometer just went into overdrive!

Anyone else get that reaction? Or is it just me?

 

I haven't read the publication and would probably not understand much of it anyway, but my meter went of during some of the ME/Dauer-discussions a while ago, so am keeping a wait-and-see attitude.

 

100% yes

 

Yes, but natural process can have oscillation periods which differ, according to the process, from incredibly short time intervals, to processes with periods of millions of years (an probably more). It's not that the opposing forces come and go, they are always there, but are time-shifted relative to each other so that some are in the ascendancy at some times and not at others. I think sea tides will be one example (of zillions). I was just pondering that the disruptive factor could itself be what ME is, in this scenario. That disruptive factor would not have to come and go, just be there all the time, in oscillatory contention with the healing process that is also always there all the time. 110% conjecture .

 

Why?