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

ljimbo423

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sorry, can you tell me what LPS is?.. and can one be tested for leaky gut? there are any particular signs that should be present in someone with leaky gut?
Hi notmyself - Sorry about that, I fixed my post to explain what LPS are. It stands for lipopolysaccharides.:) You can be tested for a leaky gut by a lactose or glucose breath test.

You can also have your zonulin blood levels tested, which correlate with a leaky gut. This is a list of some of the symptoms that can be caused by a leaky gut-

Leaky Gut Symptoms (I prefer to call this Leaky Small Intestine)
Food Sensitivities
Headaches
Joint Pain
Fatigue
Skin symptoms (such as eczema or rashes)
Respiratory symptoms (such as asthma)
Mood symptoms (such as depression)
Brain symptoms (such as Autism)
http://www.siboinfo.com/symptoms.html

Jim
 

ljimbo423

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In my case, I believe severe long-standing stress from childhood weakened my immune system, leaving it vulnerable to various viruses that healthy people generally have no trouble with. Healthy people have EBV and HHV-6 and coxsackie B, but they don't develop ME/CFS from it. So I theorize that the immune system endures some assault, whether environmental (toxins etc.) or emotional, leaving it vulnerable. My ME/CFS was very slow onset.
LPS stands for lipopolysaccharides. Severe stress also negatively alters the microbiome and can cause or worsen a leaky gut. An impaired immune system would also make one more susceptible to dysbiosis and leaky gut as well.

I think infections and toxins can add to dysbiosis and leaky gut as well as add to or cause mito dysfunction. My CFS came on fast during a viral infection when I was 18.

I cleaned up my diet, stopped drinking and started taking some supps, which allowed me to go back to work after a year or so. The second time I got CFS, it came on very slowly over several years.

I also think auto-immunity plays a significant role in a subset of people with CFS but not all. I am certain the immune system is the primary cause of symptoms in CFS but I don't think it is the root cause.:)

Jim
 

notmyself

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LPS stands for lipopolysaccharides. Sevee stress also negatively alters the microbiome and can cause or worsen a leaky gut. An impaired immune system would also make one more susceptible to dysbiosis and leaky gut as well.

I think infections and toxins can add to dysbiosis and leaky gut as well as add to or cause mito dysfunction. My CFS came on fast during a viral infection when I was 18.

I cleaned up my diet, stopped drinking and started taking some supps, which allowed me to go back to work after a year or so. The second time I got CFS, it came on very slowly over several years.

I also think auto-immunity plays a significant role in a subset of people with CFS but not all. I am certain the immune system is the primary cause of symptoms in CFS but I don't think it is the root cause.:)

Jim
how are you feeling now?i remember from other posts you say you improve a alot by taking care of your gut..i hope you are still on the path towards feeling better and better..
 

ljimbo423

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how are you feeling now?i remember from other posts you say you improve a alot by taking care of your gut..i hope you are still on the path towards feeling better and better..
Thanks notmyself. I hope you are improving as well! I have improved a lot and continue too, although it's not going nearly as fast as I would like.:)

I have improved as much in the last 8 months as I had in the prior 10 years! I'm sure I could heal even faster if I could increase the dosage of the antibiotic herbs I'm taking without getting too much die-off. I think this is my biggest stumbling block rate now.

Jim
 

Wishful

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So far I like Diwi9's concise hypothesis: 'An immune-mediated disease of the central nervous system usually initiated by a viral infection.' While viral infections are the most common form of immune activation, it seems like it's 'an immune system activating event' that triggers ME/CFS. That switches something in a cell or organelle (mitochondria?) that causes a feedback loop that sustains the abnormal state. Victims sometimes experience an abrupt temporary remission, which shows that whatever it is is abruptly reversible, which leaves out chronic infections and other slow-to-change options.

My personal observations also indicate that mitochondrial function (specifically peroxynitrite levels) are affected, which in turn affects kynurenine levels, which seem to be responsible for many of the symptoms.

My guess is that some biochemical is altering function of the microglial cells, affecting their mitochondria, and the downstream effects of those changes sustains the alteration.
 

Diwi9

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Some speculative food for thought on etiology...

There appears to be a link between ME/CFS and hypermobility. I am curious if collagen defects (i.e. genetics) can weaken the blood-brain barrier, allowing for infection/inflammatory responses to go where they shouldn't. I recently read that many women with Ehlers-Danlos have symptom worsening before PMS because progesterone's effect of "loosening" collagen (here). It makes me wonder if collagen defects create a vulnerability for ME/CFS and if women are more susceptible because windows of opportunity prevail during the monthly cycle.

I always knew I was flexible, but it was not until I saw an ME/CFS specialist and was asked to perform the Beighton Test that I had ever considered myself hypermobile.
 

ljimbo423

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I am curious if collagen defects (i.e. genetics) can weaken the blood-brain barrier, allowing for infection/inflammatory responses to go where they shouldn't.
A leaky blood brain barrier is something I think is a possibility in some. Based on a leaky gut theory and lipopolysaccharides (LPS) causing immune activation.

It could be possible that even "normal" amounts of LPS in the bloodstream could cause neuro-inflammation and some symptoms in addition to mito dysfunction, because of the leaky blood brain barrier.

Exercise could elevate LPS levels in the blood, worsening symptoms. Exercise even in healthy people is known to raise LPS levels in the blood.

Jim
 

pibee

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CDRCDRCDRC
DRCDRCDRCD
RCDRCDRCDR

CDR. Of course. Only mechanism that could be causing most modern chronic neuro diseases (ME, autism, Alzheimers, even implied in MS..) but has only one known medicine on the planet that could maybe, possibly, kinda, treat it... but it is available only in some African countries !


Feel like i just wrote a summary for some low budget Action Sci Fi movie
 

halcyon

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Victims sometimes experience an abrupt temporary remission, which shows that whatever it is is abruptly reversible, which leaves out chronic infections and other slow-to-change options.
That doesn't really leave it out. Being immune mediated (as I agree it is), as we know, the symptoms come from the immune response, not from the infectious agent itself. It's entirely conceivable that the immune system might suddenly modulate in different directions, causing a rapid change in symptoms, regardless of the status of the pathogen. Regardless, there is hard evidence of chronic CNS infection in ME patients, which is stronger than the anecdote of sudden relapse/remission which is subjective and unproven.

ETA: I should say, it's unproven except in the cases of James Mowbray's patients, where he found that when patients remitted, he observed an objective disappearance of enterovirus VP1 in their bloodstream, and a reappearance upon relapse.
 
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JES

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I agree. The temporary remissions I get from symptoms occur when I catch a cold/flu. I have spent much time wondering why that might be, but IMO it doesn't rule out a chronic infection. When the immune system recognizes a new virus, it gets activated temporarily to fight this new bug, so as a side effect it may temporarily keep the chronic infection better under conrol, or it may be that it switches to a different mode where it doesn't "fight" the chronic infection and thus my symptoms reduce.

I know the above sounds a bit unscientific, but it's clear that a cold modulates the immune response, and so it might not rule out a chronic infection.
 

notmyself

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Thanks notmyself. I hope you are improving as well! I have improved a lot and continue too, although it's not going nearly as fast as I would like.:)

I have improved as much in the last 8 months as I had in the prior 10 years! I'm sure I could heal even faster if I could increase the dosage of the antibiotic herbs I'm taking without getting too much die-off. I think this is my biggest stumbling block rate now.

Jim
i think i can improve, the only problem is i don t do nothing for it, i don t know where to start..maybe i should start with the gut aswell
 
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As quite a few others have mentioned, I don't believe we are dealing with a singular disease here. There is simply too much diversity in our symptoms among us. Obviously, punishing crushing fatigue is one of the common denominators, but aside from that there is just too much diversity among all of us. When someone here recently posted that consumption of alcohol gave them energy, I knew that I have really nothing disease-wise in common with that person. Alcohol kills me. It's bottled poison for me, exacerbating all my ailments. Drinking wine, after a few hours time, makes me nearly comatose. Not something I aspire to.
I don't even subscribe to the subgroup theory, where we really all have the same disease, but just different varieties of the same thing. I think many of us have completely unrelated disorders, from a physiological perspective. It's been said of cancer, that cancer is not a disease, it is 30 different diseases. I think the same holds true for CFS. We are dealing with multiple pathologies here, multiple diseases here.
 

ljimbo423

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i think i can improve, the only problem is i don t do nothing for it, i don t know where to start..maybe i should start with the gut aswell
I think treating dysbiosis and leaky gut is a great place to start!;)
My profound flu-like symptoms I've had for years, are to a large degree gone!

I still have significant brain fog, although that has also improved A LOT. This has only happened in the last several months, since I started treating my gut.

Jim
 

Learner1

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I believe its an essential problem for most people, due to the standard Western diet and antibiotics at some time in our past.

However, for many people there are other factors - genetic predisposition, nutrient deficiencies/disturbed biochemistry, toxicity, the impact of stress/trauma, chronic hidden infections, compromised mitochondria, and the immune and nervous systems misbehaving as a result of the above.

Some, or even all of these can be factors in any one person. Very vexing...:bang-head:
 

Wishful

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Okay, the abrupt remissions don't rule out immune system fluctuations being responsible, but I think it counts as evidence against it. As for hard evidence of chronic CNS infection in ME patients, that could just be a statistical link caused by most ME being triggered by infections, which means that you are more likely to find chronic infections in the group of people who had infections of some sort.

Learner1's comment brings up a question: are there any population sub-groups that are known to differ greatly from the normal rate of ME/CFS? Are people with healthy (supports healthy microbiome) diets markedly less likely to develop ME/CFS? I suppose it's hard to determine, since supposedly 90% of victims still don't have a diagnosis, and that approaches 100% for primitive societies lacking in processed foods.

My feeling about ME subgroups is that there is probably a critical reaction that most of us have in common. We differ in our body's functioning regarding the processes that affect that critical reaction, even if they are multiple steps away. The combinations involving multiple steps quickly leads to hundreds of different responses possible. There are also different reactions downstream of the critical reaction, and we all differ in our responses to those. That's one reason I suggested that researchers might benefit more from studying a few patients with reliable before/after responses rather than doing statistical analyses on large groups of patients. The large group just has too many variables.
 

ljimbo423

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My feeling about ME subgroups is that there is probably a critical reaction that most of us have in common. We differ in our body's functioning regarding the processes that affect that critical reaction, even if they are multiple steps away. The combinations involving multiple steps quickly leads to hundreds of different responses possible. There are also different reactions downstream of the critical reaction, and we all differ in our responses to those. That's one reason I suggested that researchers might benefit more from studying a few patients with reliable before/after responses rather than doing statistical analyses on large groups of patients. The large group just has too many variables.
I agree 100%. There are countless biochemical pathways involved in CFS and everybody reacts to CFS differently because each of us are genetically and biochemically unique.

I also think I listened to a video recently of Mady Hornig saying she is or will be looking into how small groups of patients respond to different treatments, rather than looking at large groups because of the many variables.

I think there is a very good chance of her making much better progress in understanding the causes of CFS by monitoring small groups responses to treatment.

Jim
 
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My personal observations also indicate that mitochondrial function (specifically peroxynitrite levels) are affected, which in turn affects kynurenine levels, which seem to be responsible for many of the symptoms.

My guess is that some biochemical is altering function of the microglial cells, affecting their mitochondria, and the downstream effects of those changes sustains the alteration.
Hi Wishful.

Are you able to test peroxynitrite levels? Is the effect of peroxynitrite and kynurenine well studied?

This abstract sounded interesting with regards to Indoleamine 2,3-dioxygenase (IDO), kynurenine and autoimmune conditions: https://link.springer.com/chapter/10.1007/978-3-319-11870-3_7

Andy