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any theories on why nothing seems to cause a nocticeable shift in well-being??

Messages
70
does anyone have any idea of why nothing seems to have any effect? maybe some of us have found some relief in specific things, but for the most part it appears to me that this disease is a complete mystery despite the amount of active involvement toward curing it/figuring it out by those of us who are living with this.
a cure has definitely not been found for a lack of us trying.
does anybody have an idea to why nothing seems to make any significant change in how we feel??
this seems beyond any sense of what should be considered a resilient disease; it's just bizarre.
 

Belbyr

Senior Member
Messages
602
Location
Memphis
I think it is on a Neuro-immune level that we are sick and the technology is just now there, it just hasn't produced anything yet. Could be some big changes going on in microbiome research, look at Parkinson's latest findings...

The reports of some people feeling a lot better on B cell depletion or filtration is very telling for a portion of us as well.

I hope the next big thing is flipping epigenetic switches on and off.
 

Wishful

Senior Member
Messages
5,657
Location
Alberta
I think it's a matter of neuroinflammation modifying how our brain cells work. The cells just aren't working optimally, and that affects how we feel and think. Think of ME as making the ground muddy, so our neurons have to slog though the sticky mess all the time. We have to figure out what the chemical imbalance is (and hopefully what causes that) and get our cells working properly again.

It is odd how some things work really well, even triggering complete temporary remission, but then stop working. It's like some set point is misadjusted, and our bodies keep adapting to the wrong set point.
 

Hufsamor

Senior Member
Messages
2,757
Location
Norway
A scientist had a theory about the body closing down.
That whatever is going on in the body, the body really needs to shelter itself from to much activity.
So even if you find something that might help for a while, the body might soon adjust and close that window. Witch makes sense to me, as I myself and a lot of others try new thing that works for a while, maybe 3 months, and then all the sudden back to scratch.

I'm wondering, if it's an inflammation, you might hit the nail taking care of your guts and other stuff (after all, a lot of people have improved.)
But if the inflammation flares every time you do to much, the body shuts you down to take care of itself? Maybe you find something that gives you energy, but the body doesn't want energy so it shuts down....
Does that make sense?
 

percyval577

nucleus caudatus et al
Messages
1,302
Location
Ik waak up
That whatever is going on in the body, the body really needs to shelter itself from to much activity.
I almost completly agree with your message, only here I would say, the body "thinks" that that he needs to shelter.

Maybe the mechanism of Sickness Behaviour is out of tune.
That would mean that the mechanism of feeling ill is ill.

That would mean that there would be a dysregulation of pathways.
This might be difficult to detect.
On the other hand it might be possible to readjust it,
Maybe it is required to find out through which pathways (ie triggered by different viruses)
the Sickness Behavior pathway (or another main pathway) has gotten out of tune.
 

Wishful

Senior Member
Messages
5,657
Location
Alberta
If its an inflamtion, such as the brain, its not something we can see or measure.

Actually, it is being measured. PET scans with the appropriate marker is one method. Localized temperature sensing is another. Both show elevated inflammation in the brain. Techniques for measuring neuroinflammation, especially localized levels, are still in their early stages, but they show lots of promise for helping to understand diseases such as ME.
 
Messages
85
I have no doubt that the fatigue is a protective mechanism of the body in the same way becoming tired is. Except in our case assuming it is mitochondrial in nature the body is trying to keep some level of energy in our batteries. Pain is another example of our inherent protections.

But the real question remains why and what. That and why so many folks display various symptoms.
 
Messages
70
It is odd how some things work really well, even triggering complete temporary remission, but then stop working. It's like some set point is misadjusted, and our bodies keep adapting to the wrong set point.

this topic needs its own post as well.

I often thing of it as a triangle; to no matter how much you pull (improve) one side (area), the remaining two sides (could be more) just tighten in order to keep the shape's integrity. so when you start working on one of those angles, the angle you just improved readjusts and so we're constantly stuck in a Catch 22 essentially just spinning around in circles but going nowhere...
 

femtosecond99

Senior Member
Messages
136
Depends on who you ask. Lots of things help move people toward recovery.

Yes, I would agree. It's important to identify the initial cause of your illness. For most people that is some kind of stressor (work stress, relationship/emotional stressor), sometimes physical stress (excessive exercise / overtraining), and sometimes a viral infection, and quite often some combination. The illness itself can also cause considerable stress.

What seems to help the most is identifying and resolving any precipitating and perpetuating factors, and then doing gradual rehabilitation while being careful not to trigger a relapse.
 

Wishful

Senior Member
Messages
5,657
Location
Alberta
This adaptive response to treatments would probably be hard to study in a lab. I think it as something that researchers should be aware of when they try creating a model of ME; maybe it will trigger a creative insight.

Our bodies evolved to adapt to changes. It's pretty amazing how well our bodies can adapt this way. Unfortunately, ME seems to be using that process to keep us in this abnormal state. :(