• Phoenix Rising needs funds to operate: please consider donating to support PR

What is your personal theory or understanding of ME/CFS?

neweimear

Senior Member
Messages
215
Likes
617
It has mine and I haven't fully healed my leaky gut yet.:) 11 months ago I started aggressively treating dysbiosis and leaky gut.

I was able then, to do about 2 hours of physical activity a day without suffering PEM. Now, 11 months later and still treating dysbiosis and leaky gut, I'm able to do between 4-6 hours a day of physical activity without PEM and I continue to improve.

I recently have also been treating mitochondrial dysfunction more aggressively. I believe the mitochondrial dysfunction is being caused by immune system activation and oxidative stress from a leaky gut.

It seems to me the mito. dysfunction is the cause of my fatigue and PEM but the dysbiosis and leaky gut are the cause of the mito. dysfunction.

Jim
Thanks Jim, can I ask what exactly you are doing to treat leaky gut? Is it dietary changes alone?
 

msf

Senior Member
Messages
3,510
Likes
4,784
I'm with Jimbo, Hansen, Lipkin, KDM, Armstrong and Maes. It's all about the gut, or, whatever problem we have, it has its effects through the effect on the gut. I wrote a blog about some ideas that I'd gleaned from several places, that's as far as I've got in coming up with my own grand theory!
 

msf

Senior Member
Messages
3,510
Likes
4,784
Looking back, I can't believe that some people contributing to this thread think that ME is produced by stress. I was in Vietnam (not in a big city) when I fell ill - I'd like someone to suggest how drinking coconuts in hammocks caused my ME more than the Yersinia infection (and my crappy genetics) I picked up at that exact time did.
 

pamojja

Senior Member
Messages
1,886
Likes
2,594
Location
Austria
Looking back, I can't believe that some people contributing to this thread think that ME is produced by stress.
I also made that mistake when I got a PAD diagnosis with a 60% walking disability, together with PEM, that I thought the 2 years of a extremely stressful working-place, which I quit just before experiencing a serious burn-out, must have been a heavy co-factor to all of it. So that mistake is all to easy to make.

What I didn't consider was that in those 2 stressful years also had a number of serious infections. So maybe me reacting totally stressed-out was rather a trivial down-stream effect not only from the stress-full work..

That doesn't denies that my sympathetic dominance really does make everything worse. And de-stressing for me the highest priority. Especially there isn't much else one could do.
 

ljimbo423

Senior Member
Messages
2,740
Likes
6,660
Location
United States, New Hampshire
Hi jim.
How are you treating leaky gut.

EDIT- I have a low carb diet. I eat only 50 grams of carbs a day from starchy foods like rice, potatoes etc. I think starches feed pathogenic bacteria much more than any other foods.


I'm throwing everything at it but the kitchen sink!:) To heal my gut I take colostrum, glutamine, aloe vera, prebiotics, probiotics and digestive enzymes.

I take oil of oregano, thyme and holy basil to kill off the overgrowth of bacteria/dysbiosis. I take curcumin, quercetin, 3 grams EPA/DHA and nettle leaf extract, to help reduce inflammation in the gut, which leads to leaky gut.

I think it's important to support the mitochondria while taking supplements to kill off gut bacteria. Killing off the bacteria causes a rise in LPS in bloodstream, increased oxidative stress and worsens mito. function.

I take high dose coq10 (500mg a day) to support my mito, which lessens PEM and dramatically lessens flares-the flu-like episodes I get sometimes.

Btw i was.in top 2% of population in leakiness in a gut test.
That makes perfect sense to me! How do you think your gut became so leaky?

Mine was caused mainly by 35-40 courses of antibiotics over many years but I also had a junk food diet, rarely ever ate fruits and veggies (a good source of prebiotics and antioxidants), drank heavily and had very high levels of stress.


Jim
 
Last edited:
Messages
5
Likes
13
It has mine and I haven't fully healed my leaky gut yet.:) 11 months ago I started aggressively treating dysbiosis and leaky gut.

I was able then, to do about 2 hours of physical activity a day without suffering PEM. Now, 11 months later and still treating dysbiosis and leaky gut, I'm able to do between 4-6 hours a day of physical activity without PEM and I continue to improve.

I recently have also been treating mitochondrial dysfunction more aggressively. I believe the mitochondrial dysfunction is being caused by immune system activation and oxidative stress from a leaky gut.

It seems to me the mito. dysfunction is the cause of my fatigue and PEM but the dysbiosis and leaky gut are the cause of the mito. dysfunction.

Jim
How are you treating Mito Dysfunction?
 

ljimbo423

Senior Member
Messages
2,740
Likes
6,660
Location
United States, New Hampshire
How are you treating Mito Dysfunction?
The thing that is helping me the most for mitochondrial function is high dose coq10, 500 mg a day.

It has stopped the flu-like flares I use to get after going out for walks, that would last 4-5 days and usually put me in bed for those 4-5 days.

It seems very clear to me now, that mito. dysfunction is causing my fatigue and flu-like flares but I believe it's a leaky gut that's causing the mito. dysfunction.

Jim
 
Messages
5
Likes
13
The thing that is helping me the most for mitochondrial function is high dose coq10, 500 mg a day.

It has stopped the flu-like flares I use to get after going out for walks, that would last 4-5 days and usually put me in bed for those 4-5 days.

It seems very clear to me now, that mito. dysfunction is causing my fatigue and flu-like flares but I believe it's a leaky gut that's causing the mito. dysfunction.

Jim
Thanks a lot, Jim. It seems like CoQ10 is helpful to a lot of people on this forum. I am going to get some ASAP.
 

ljimbo423

Senior Member
Messages
2,740
Likes
6,660
Location
United States, New Hampshire
Thanks a lot, Jim. It seems like CoQ10 is helpful to a lot of people on this forum. I am going to get some ASAP.
Your welcome. Let us know how it works for you.:) Sometimes the improvements you get from it can be hard to see.

That happened to me last summer when I dropped my dose of coq10 from 4oo mg to 100 mg a day because I didn't think it was doing anything for me.

I started getting CFS flares from walking after I lowered my dose BUT I didn't realize it was the coq10 that was preventing the flares, until a few weeks ago when I went back up on the dosage.

So it took me several months to make that connection! Now I'm able to go out walking again without getting flares, because of the high dose coq10.:thumbsup:

Jim
 

Arius

Senior Member
Messages
109
Likes
174
Location
A secret fortress at the bottom of Lake Ontario
For me, I feel like the theories stating CFS is an autoimmune disorder hold the most weight. My immune system has been hyperactive ever since I developed CFS (which started with a flu-like illness), and it's become the norm for me to have elevated WBC, so that makes the most sense for my case.
Right, except that many of us - including me - have UNDERACTIVE immune systems with LOW WBC counts.
 
Messages
14
Likes
13
No high fat diet mostly but
I also eat some fruit...red beans and veg that has carbs.
I not a fan of keto. I just aim to mainatin stable blood sugar.
I eat carbs but NO SPIKES in glucose. Dont let.blood sugar increase.by much. No high load carbs like rice pasta etc.
that almost sounds like keto ;)
 

Arius

Senior Member
Messages
109
Likes
174
Location
A secret fortress at the bottom of Lake Ontario
I now believe that the key is hypothalamic dysregulation.

The hypothalamus becomes damaged by long-term chronic stress and trauma (explaining the tendency for PWMEs to be over-achievers, athletes, and people with histories of trauma and chronic stress).

The hypothalamus regulates various body functions: immune response (if it is behaving erratically, this explains why some of us have OVER-active immune systems while others have UNDER-active immune systems), REM sleep (hence the prevalence of sleep issues, and of course REM is the restorative phase of sleep, so that explains a LOT of things, including unrefreshing sleep, slow recovery, etc), and, crucially, the hypothalamus interacts with mitochondria (potentially explaining PEM, brain fog, and fatigue).

From there it's individual how it all plays out. I have low immune functioning, and the Epstein-Barr Virus has become active in my system. My immune system won't kill it, so I basically just permanently have mono, which explains why I have nausea that gets worse with exertion, the sore throats, etc.

I believe the collapse of my health was exacerbated by a vegan diet and resulting gut health issues and protein deficiency.

This video by Dr. Jacob Teitelbaum explains how to treat it effectively:
- although I have so far been unable to find a doctor who will help me do all these things.