David Bell about "slow sepsis" in ME

Yes, the chart that shows the correlation.

 

I would use the term progressive for myself. I am slowly getting worse, but I dont know if any of my tissues or body systems could be described as degenerating.

My initial course of illness was fluctuating but after the first 10 years seems to have become progressive. It still fluctuates, but the baseline has become more of a downward slope than a level line.

Most of the last 20 years has seen the cheerful pronouncements that most people improve, if not recover, in time. That may be true for some, but just how many I wonder? There seems to be quite a few on the forum who are getting slowly worse. I think that idea that most people improve with time is part of the reason no bothers to take the condition seriously. Like with the common cold, people feel awful, but if they are going to recover by themselves anyway, why worry about it?

 

I do hope it’s been a damp week and the fire is a garden burn off with proper brick incinerator or a nice blaze inside a wood stove to dry out the house.

If it’s full summer, I’m afraid we’d have to put it out in any other case. Especially in Australia! What were you thinking!

 

If numbers were on the outer bounds of normal range, then

I would tend to think that a trend (whether the number is moving in or out of the normal range over time)

and any difference from the patient’s own norms where known

would be more interesting than absolute numbers.

ETA: But it’s all just clues. If we don’t know what we’re looking for, it may be next to useless.

(Personal experience: hyperparathyroid showed as elevated, but ‘still within normal bounds’, blood calcium which on following 2-3 measurements went up to just above normal. This had a diagnosable cure: ultrasound to find enlarged parathyroid gland and surgically remove. So got the ultrasound and proceeded from there.
If there was nothing to do about a barely abnormal result I don’t know that it would help at all.)

 

If one loses muscle, as I and many have, and as was demonstrated in one of the recent studies (by elevated 3-methylhistidine levels in men), then I would call that degenerative. Might not be permanent, but my muscles have certainly degenerated.

And one of the things that increases 3-methylhistidine levels is 'sepsis', so whether or not 'slow sepsis' is 'silly term' or not, I think it might have value.

 

Interesting, @dannybex. I haven't seen this new publication, can you link?

 

Well, not exactly new, but the 2016 study from our friends in Norway...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/

"Analysis in 200 ME/CFS patients and 102 healthy individuals showed a specific reduction of amino acids that fuel oxidative metabolism via the TCA cycle, mainly in female ME/CFS patients. Serum 3-methylhistidine, a marker of endogenous protein catabolism, was significantly increased in male patients."

 

Thank you @dannybex, cool!