How does MECFS get worse long term?

[Darach]

There's a lot of research into short term PEM, but is there any work done on what makes MECFS worse long term or how the overall level from mild to moderate to severe? I've come across Jason Leonard's paper which show how fatigue gets worse when people don’t stay within their energy envelope (ie pacing), but there was no significant change in physical function. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2767446/ Is there any other research like that out there?
Just as important, how does it make us worse? Dr Myhill suggests cells and mitochondria are damaged by inflammation and don’t have a chance to recover when we are on a push and crash cycle. Makes sense, but is there any hard evidence confirming it? Or are there other explanations?

 

[keepontruckin]

I cannot give you facts on studies done. In our personal case, the pain, depression fatigue and immune system problems got worse.

 

[Neunistiva]

I think no one knows.

For me crashing accelerates worsening, but not crashing and pacing properly does not stop it. I thought infections worsen my condition as well, but last winter I didn't even get a cold and I still worsened

Dr. Davis said it seems severity level is due to genetics. Maybe we'll hear more about it at OMF Symposium at the end of September.

 

[HeleneG]

I've been wondering that myself. My symptoms have gotten worse over 34 years.Now I spend most of my time in bed but I'm mobile. I'm hoping it doesn't get worse. I feel better now that I don't allow myself to overdo and make a point of resting. I haven't seen research on this though. Only recently has it occurred to be that this is a progressive disease.

 

[dannybex]

This is an unanswerable question, except to say disease progression and/or remission will always be different for different cases (different triggers, different environmental factors, etc.). There's no one answer because the illness is so heterogeneous.

 

[Wishful]

Damage to cells and mitochondria shouldn't be a cause of long-term worsening. Both get replaced constantly. Mitochondria last a week or two I think. I suppose they could get damaged in ways that are passed on to their replacements, but that should be fairly easy to spot, yet hasn't been reported.

Also, many of us have had abrupt but temporary remissions, which shows that permanent degradation isn't involved. Long term worsening might be caused by various factors adding up: one chemical pathway gets altered, which affects vitamin absorption elsewhere, which reduces transport channels elsewhere, and so on. Our bodies are a collection of interconnected chemical pathways. Recurring crashes will keep altering things that alter other factors.

We won't know how it makes us worse until the researchers have completely mapped out all the chemical pathways and other biological factors involved. Given how difficult that is, we might have a cure before we reach that point.