How does m. E cfs work physiologically in the body?

[Emmarose47]

Hi all
I've been thinking more lately about how m. E cfs actually works in the body?
I know we have issues with the mitochondria production, there is also a viral component of a virus getting reactivated and that it is a neurological condition and m. E means inflammation of the brain, spine and creates pain.
What I'm not understanding is how these factors link together?
Like what starts first and how it knocks on to the other issues?
Or is that why the community is in the dark as its not known how exactly it's playing out in the body?
I'd love to know more any thoughts?

 

[Wishful]

Mitochondrial production is not necessarily affected by ME. As far as I could tell, I never noticed anything that felt like a reduction in ATP production. The viral theories are also unproven. My thoughts on it are that viral infections can trigger ME and can add to ME severity, but aren't an essential part of ME.

I do think that ME is neurological; some brain cells are not functioning properly under normal conditions, and function even less well under abnormal conditions (immune activation, stress, etc). Pain is simply one of the neurological malfunctions that we really notice, and the level and areas that we perceive pain vary with the individual.

We're still in the dark about how ME works because the brain is still mostly a mystery. Researchers are discovering new aspect of brain function all the time, and there's plenty more to be discovered. I think ME, despite the severity of the symptoms, involves fairly subtle abnormalities in limited areas of the brain, which makes those abnormalities hard to find. I think blood or muscle samples are a waste of time for understanding ME's core dysfunction. Even CSF samples might not reveal the abnormalities (some brain chemicals travel only millimeters before reacting with something and disappearing). Imagine if ME's core dysfunction is a slight difference in number or diameter of some ion channel in a membrane inside a cell; how do you find that?

 

[wabi-sabi]

@Emmarose47

That's the $64,000 question! The NIH meeting two weeks back has the scientists asking these same questions and starting to come up with some answers. One thing they are still working on is whether our mitos are broken or whether they are malfunctioning because they are not getting enough oxygen. Either way the result is the same- lack of ATP production. ATP is the energy of life that powers everything in the body. With no fuel, nothing in the body runs. I don't quite understand yet how the metabolic problems interact with the immune problems and the neuro problems, but they are working on it.

NIH should be getting the conference online so you can listen to the scientists yourself. David Tuller also did an interview about it if you want to watch his video on the virology website. Anyway, these were most of the big names with the latest research, so what they say is our best understanding and most up to date.

 

[linusbert]

atp production can be impaired without mitochondria being directly involved. i think it can be any kind of energy metabolism / pathway defect/interruption for various reasons OR a leakage of energy for example through over active immune system.
but for sure chronic disease has its impact on mitochondria too.

also cfs so far isnt even a disease yet its a syndrome and i actually believe there will never be found a single disease but multiple causes for this syndrome.
by following this forum i came to conclusion that there isnt a thing that works for everybody, often its even contradicting, one benefits another will crash from the same thing. which supports the theory that people have different causes and malfunctions.
just for examples, ome swear of cold and fasting, for me fasting and cold are guaranteed triggers to get worse pretty fast.

so basically cfs comes down to find the individual trigger which caused it, it can be soooo many things, just a few examples:
- immune system overactivation through a virus or others
- intoxication of various things like heavy metals or pesticides or PUFAs or others
- mitochondrial diseases
- metabolic myopathies
- brain dysfunction and dysregulation like wishful suggested
- autoimmune disease
- inflammatory disease
- vitamin and nutritional deficencies
- vegan diet
...

 

[Emmarose47]

@Emmarose47

That's the $64,000 question! The NIH meeting two weeks back has the scientists asking these same questions and starting to come up with some answers. One thing they are still working on is whether our mitos are broken or whether they are malfunctioning because they are not getting enough oxygen. Either way the result is the same- lack of ATP production. ATP is the energy of life that powers everything in the body. With no fuel, nothing in the body runs. I don't quite understand yet how the metabolic problems interact with the immune problems and the neuro problems, but they are working on it.

NIH should be getting the conference online so you can listen to the scientists yourself. David Tuller also did an interview about it if you want to watch his video on the virology website. Anyway, these were most of the big names with the latest research, so what they say is our best understanding and most up to date.

Thanks so much wabi... What is NIH? I would like to listen to the scientists that's great...

 

[Emmarose47]

What is ATP?

 

[linusbert]

What is ATP?

adenosinetriphosphate, is a molecule of 3 phosphate groups, produced by the mitochondria and is the bodys "currency" for energy. it will release energy when a phosphate group is split off. but its not stable and cannot be stored so the body needs to regenerate it all the time.

usually when its *diphosphate (ADP), the body tries to append the 3rd phosphate again, so its constantly switching between di and tri phosphate. this happens when your body processes food or works on your reserves. its a constant cycle, also known as krebs cycle.
switching between di and tri is rather easy, but if the body is short in energy it will burn off the *diphosphate to adenosinMONOphosphate (AMP), and in that case the body completely deconstructs the AMP and rebuilds it completely. this can take 48+ hours.
this complete reconstruction (through de-novo synthesis) can be accelerated by d-ribose as its part of the ATP molecule so it can be done much faster. so for some d-ribose can help if that specific pathway for reconstruction is broken. MADD is such a disease.

btw, this can explain why some get bed crash after 1-2 days, because in the moment there is sufficient energy, but by burning ADP to AMP and then requiring to completely reconstruct the ATP, this can take multiple days. so there might be a lack of ATP. also if de-novo synthesis of atp is broken in some way this might take much longer.

the body has multiple ways to regenerate ATP from ADP but beeing differently efficient and differently dirty (ROS) so if one isnt working or environmental conditions arent optimal the body can fallback to other pathways.

 

[Wishful]

so basically cfs comes down to find the individual trigger which caused it,

I disagree. I think ME is an abnormal state which can be reached by various triggers (usually immune activation by various causes) and then locks into that state and is hard to reverse. It's like a gun: it doesn't matter whose finger pulls the trigger, the bullet flies out and it's hard to put the bullet back in (and patch the holes). So, finding out that your ME was triggered by virus x rather than virus y, or maybe by pulling a muscle, is unlikely to help treat your ME.

 

[Treeman]

I don't quite understand yet how the metabolic problems interact with the immune problems and the neuro problems, but they are working on it.

My recent theory for my specific symptoms is as follows:

Big viral infection (it may be a virulent variant or a genetic susceptibility) that knocks my immune system out. My immune system tries to fight back causing some autoimmunity (or the viruses control the immune response) but the immunoglobulins collapse. The virus or viruses (dormant reactivation) then dominate with a cascade effect occurring.

This cascade include uncontrolled persistent inflammation which leads to micro clotting. These micro clots then deprive the organs of the body vital oxygen to enable them to operate efficiently. These symptoms included brain fog, PEM, IBS, muscle pains, poor energy production, poor immune levels, etc, etc.

I'm now in the process of implementing a protocol to reverse the cascade effect and improve the immune system to allow homeostasis to return.

 

[wabi-sabi]

What is NIH? I would like to listen to the scientists that's great...

NIH is the National Institutes of Health in the US. They host a meeting on ME/CFS every couple of years. This last one is supposed to be online, but they don't seem to have the recording up yet. At least I can't find it. Dr. Systrom has a webinar on the cardio issues coming up in January. I can't find the registration link right now since I'm too brain dead, but I registered for it on a day that my brain worked.

Here's the overall website. It's headed up by Drs. Bateman and Hansen, so you know it's good!
https://www.ninds.nih.gov/about-nin...l/nandsc-mecfs-research-roadmap-working-group

 

[Andryr]

knocks my immune system out

Many of us btw have immune system abnormalities e.g. inability to catch cold.
I have done a 'complex immunologic study' in a lab. I have an abnormal value (too many) of 'circulating middle-sized immune complexes'. I showed it to doctors and they said 'wtf is that'.

 

[Emmarose47]

Many of us btw have immune system abnormalities e.g. inability to catch cold.
I have done a 'complex immunologic study' in a lab. I have an abnormal value (too many) of 'circulating middle-sized immune complexes'. I showed it to doctors and they said 'wtf is that'.

I haven't had a cold or any other illnesses for yrs! I worked for 10yrs as a nurse and Never caught anything that was going around...
I'd actually like to have a cold just to. Feel somewhat normal...

 

[Wishful]

they said 'wtf is that'.

It's something that shows that ME is not psychological. The abnormality might not be useful for figuring out how ME works, but it shows that body systems are screwed up in various ways.

 

[linusbert]

I have done a 'complex immunologic study' in a lab. I have an abnormal value (too many) of 'circulating middle-sized immune complexes'. I showed it to doctors and they said 'wtf is that'.

same for me, i dont know about the blood but i dont get sick since getting the disease, except for corona and once when i had a slight remission.
also when becoming a real disease, like corona, my symptoms somewhat improve.
its weird but some people here report the same.

 

[Seadragon]

also when becoming a real disease, like corona, my symptoms somewhat improve.
its weird but some people here report the same.

I do wish some of the research would look at this phenomenon.

I realise not everyone with ME reports this (some get worse with colds/flu) but a fair amount do say they improve temporarily.

Does anyone know if this happens with any other disease or condition or is this unique to some PWME?

 

[dave11]

I do wish some of the research would look at this phenomenon.

I realise not everyone with ME reports this (some get worse with colds/flu) but a fair amount do say they improve temporarily.

Does anyone know if this happens with any other disease or condition or is this unique to some PWME?

A cold improves my symptoms of hypoglycemia for the duration of the cold.

 

[dave11]

"How Does Illness Affect Blood Sugar Levels? When you get sick — whether it's a minor illness like a cold or a bigger problem — the body sees the illness as stress. To deal with the stress, it releases hormones that increase sugar in the blood." https://kidshealth.org/en/teens/dia...ness Affect Blood,increase sugar in the blood​

Perhaps sickness releases hormones that help with ME?CFS?