Chronic fatigue syndrome from vagus nerve infection: psychoneuroimmunological hypothesis

Valentijn

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I guess the idea of CBT is to try to beef up the weak prefrontal cortex forcefully (and in fact prefrontal cortex volume is apparently increased after CBT); but wouldn't it be better to work on the underlying biochemical cause of the weakness of the prefrontal cortex, and fix this, so that ME/CFS patients can become better at goal setting and task initiation. CBT feels like being thrown into a very harsh and cruel military training camp.
No, I've read the manuals. The goal of CBT is to convince us that we aren't actually ill, thereby curing us. In the words of my ex-psychologist "You are not a patient!"
 

MeSci

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I think I have very similar symptoms to you Hip. I can exercise without horrible PEM (although my exercise test results are abysmal) but have lost my executive function and motivation. I had no problem graduating from a top engineering program but now can't make plans for what I will do in an hour. I am still just as logical as I was before and can do specific tasks if required (as long as they don't require too much working memory) but can't do anything that requires multiple steps like paying taxes.

Meditation seems like a much gentler way to improve the function of the prefrontal cortex than CBT-- and I believe most CBT is probably harmful for CFS patients-- although I haven't had much luck with meditation thus far. I didn't get anything out of Vyvanse but find small doses of adderall to help a bit.
I'm not aware of any deficits in planning and executing tasks myself, and I am as motivated and decisive as I ever was, except when I have brain fog, when the motivation is still there but I have trouble working out what to do in, as you say, tasks that require multiple steps.

I can't meditate as attempts make me feel dizzy. It's as though my brain resists attempts to stop thinking, although I can do it using another method - looking at the blurry shapes that I can see when I close my eyes, which I do to get off to sleep. No point trying to do it if I want to stay awake as I know I won't!
 

MeSci

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Oh dear: "If this hypothesis stands up to studies, the researcher says it could lead to new treatment strategies as well as a better animal model (which furthers research)."

When will people get it into their heads that animal models are rubbish? Oh yes - they lead to more research...and more research...and yet more research...and millions of tortured and dead animals, and then the results are found to be different in humans and we are no further forward.

It's a silly, primitive idea that became mainstream and the field of research appears addicted to it. :(

Sound familiar...?
 

searcher

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MeSci - it's possible I am always in varying states of brain fog. I'm actually just as motivated as ever but can't translate what I want to get done into action. It's like a severe form of inattentive ADHD in my case.

I'm with you on meditation. Focusing on my breath helps me when I am going to sleep but not in any other situation no matter how much I try to meditate.

Have you ever read the series of articles on the limitations of mouse research at http://www.slate.com/articles/healt...ting_our_understanding_of_human_disease_.html ?

The idea of their being a vagus nerve infection seems reasonable to me so it's very unfortunate that he brought CBT into it.
 

MeSci

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[quote="searcher, post: 369897, member: 1363"

Have you ever read the series of articles on the limitations of mouse research at http://www.slate.com/articles/healt...ting_our_understanding_of_human_disease_.html ? [/quote]

I probably haven't read that particular one, but I have myself studied in great depth the discrepancies between species in research and produced my own work on it as a freelance researcher. I have reams of files on it. It's my specialist area.

It pains me greatly to know that animals are being pointlessly tormented and killed in research on my illness, for which there can never be a reliable animal 'model'.
 

Hip

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No, I've read the manuals. The goal of CBT is to convince us that we aren't actually ill, thereby curing us. In the words of my ex-psychologist "You are not a patient!"
Ah yes, of course you are quite right. It slipped my mind that the Wessely school subscribe to the pseudoscientific notion that patients remaining ill with ME/CFS do so simply because they hold the belief in their mind that they are ill; CBT is used to change this belief, whence the Wessely school psychiatrists assume that the patients will miraculously become well again.
 

Firestormm

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ME Research UK from their Facebook page 12 July 2013:

RESEARCH UPDATE – Vagus nerve infection?

Given the evidence of the involvement of infectious agents (virus or bacteria) in ME/CFS, the prevailing view is that its symptoms reflect an ongoing immune response to infection, possibly because of immune system dysfunction. However, a recent article in the journal Medical Hypotheses http://bit.ly/1bntwFx goes much further and speculates that infection of the vagus nerve itself might be the cause of the illness.

Dr VanElzakker from Tufts University in Massachusetts postulates that a viral or bacterial infection causes activation of glial cells somewhere along the afferent vagus nerve system (diagram http://bit.ly/1aYNLuA ). The proinflammatory cytokines and other neuroexcitatory substances which this produces bombard the sensory vagus nerve, sending signals to the brain to trigger a range of involuntary symptoms, including myalgia, fever, fatigue, sleep architecture changes and cognitive abnormalities. Importantly, when glial cell activation becomes pathological, as in neuropathic pain conditions, the signals can be intensified and intractable, leading to chronic illness. According to the author, variation in ME/CFS between patients could be explained by the location of infection along the vagus nerve pathway, the severity and duration of the body’s response, and the type and severity of infection.

One advantage of this theory is that it simplifies the quest to find specific infectious causes of ME/CFS – since ANY pathogenic infection of the vagus nerve could trigger the symptoms of the disease. But is the hypothesis true? Well, only experimentation can answer that question, and possible strategies include basic biomedical imaging of the vagal nerve pathway from peripheral to central nervous system, or even functional neuroimaging studies if these are feasible.

 

Firestormm

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Quite an interesting link that ME Research UK provided in their replies to the subsequent discussion on Facebook. It highlights all the 'wanderings' of the nerve. I mean bloody hell it gets everywhere! You chaps probably seen the link before on this thread maybe: all new to me :)
 

MeSci

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Quite an interesting link that ME Research UK provided in their replies to the subsequent discussion on Facebook. It highlights all the 'wanderings' of the nerve. I mean bloody hell it gets everywhere! You chaps probably seen the link before on this thread maybe: all new to me :)
Good link. It's clear that any damage or infection of the vagus could cause a huge range of conditions.
 
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Interesting.

My illness started off with jaw pain, and since taking antibiotics for lyme my jaw has started aching again.
Near the ear and lower jaw.

I've attributed it to dental cavitations but the vagus infection theory would fit my condition as well.
 

MeSci

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MeSci -

I'm with you on meditation. Focusing on my breath helps me when I am going to sleep but not in any other situation no matter how much I try to meditate.
For me I need to be distracted from my body in order to relax, so any techniques that require you to focus on any aspect of the body are no good. It's because the body is so uncomfortable, even though not in pain. All the flutterings, sweats, involuntary muscle twitches and contractions, itches, etc., mean that I am with whoever it was who said something about preferring to be a disembodied spirit! I'm OK focusing on visual things though, including what may well be illusions that I can perceive when my eyes are closed. I also find that listening to the radio sends me to sleep, or reading.
 

MeSci

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No, I've read the manuals. The goal of CBT is to convince us that we aren't actually ill, thereby curing us. In the words of my ex-psychologist "You are not a patient!"
I suppose you couldn't think quickly enough to reply "No, you're right - I have run right out of patience so cannot be a patient!"
 

Valentijn

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I suppose you couldn't think quickly enough to reply "No, you're right - I have run right out of patience so cannot be a patient!"
Well, she didn't speak any English really, and said it in Dutch. And the patient/patience pun wouldn't work in Dutch :p
 

Legendrew

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Personally I feel if this is correct it is more likely autoimmunity directed towards the vagus nerve triggered by a viral or bacterial infection (along with other known triggers eg extreme stress or, as in my case, vaccination), once the initial infection or stress is cleared other factors eg genetics cause the immune response to continue. I say this due to the positive results of rituximab and the observed immunological abnormalities eg increased population of immature B-cells.
That aside it goes a long way to account for symptoms. No one seems to have mentioned that the vagus nerve also effects heart rate/stroke volume through cns interaction, irregular heartbeat seems to be a common complaint. Also, more interestingly I think, is that the vagus nerve links the cns to the enteric nervous system thereby effecting digestion. Overstimulation will lead to nausea (a symptom i suffered non-stop with for the first 3 months of illness getting no relief from anti-emetics) and later lack of acid may lead to gerd type symptoms, bad digestion (leading to nutrient deficiencies) which can lead to further symptoms.
An interesting theory I think, worth further investigation at the very least.
Andrew (19)
 

MeSci

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Personally I feel if this is correct it is more likely autoimmunity directed towards the vagus nerve triggered by a viral or bacterial infection (along with other known triggers eg extreme stress or, as in my case, vaccination), once the initial infection or stress is cleared other factors eg genetics cause the immune response to continue. I say this due to the positive results of rituximab and the observed immunological abnormalities eg increased population of immature B-cells.
That aside it goes a long way to account for symptoms. No one seems to have mentioned that the vagus nerve also effects heart rate/stroke volume through cns interaction, irregular heartbeat seems to be a common complaint. Also, more interestingly I think, is that the vagus nerve links the cns to the enteric nervous system thereby effecting digestion. Overstimulation will lead to nausea (a symptom i suffered non-stop with for the first 3 months of illness getting no relief from anti-emetics) and later lack of acid may lead to gerd type symptoms, bad digestion (leading to nutrient deficiencies) which can lead to further symptoms.
An interesting theory I think, worth further investigation at the very least.
Andrew (19)
It could well be autoimmunity arising from leaky gut that then attacks the vagus nerve. This might provide a simpler answer than a theory that multiple immune triggers entering the bloodstream through a leaky gut wall lead to multiple different autoantibodies that attack different organs in their own right (although they might). Then again, it could be both...

Re lack of acid, I am pretty sure I am one of those with the opposite problem, and that my alkalising diet and better pacing is helping to reduce this, hence the improvement in symptoms.
 

Legendrew

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Upon more reading i've changed my opinion. I still believe there is autoimmunity but i no longer believe it is aimed towards the vagus nerve as this would eventually cause vagus nerve damage which has unique symptoms rarely seen in cfs (in fact in terms of the gut the symptom is the exact opposite of the diarrhea usually seen in cfs.) However upon my reading I came across this http://en.wikipedia.org/wiki/Vagus_nerve_stimulation If you look at the side effects listed sleep diruption is a major one and also under ''other'' many of the non-specific symptoms sound familiar... for this reason I believe that the autoimmunity is directed somewhere else (as of yet i'm undecided but the sensory nervous system seems likely to me) but this other system or organ must be in close proximity to a vagus nerve input and hence the autoimmune response causes overstimulation of the vagus nerve leading to a whole host of non-specific symptoms complicating the clinical picture. One thing that stands out to me from the wikipedia entry is the sore throat symptom from this stimulation which is incredibly common in cfs patients. It would also explain why personally whenever I have an upset stomach everything else seems so much worse as the upset stomach like most everything else is a by-product of this vagus overstimulation. Furthermore such a cause would explain why symptoms fluctuate in most patients between good and bad days as the level of vagus stimulation will differ depending upon the level of autoimmune activity. With every new research article I read, new ideas abound. I hope one day i can recover to a stage where i can complete my degree and go into cfs research myself. Andrew (19)
 

MeSci

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Upon more reading i've changed my opinion. I still believe there is autoimmunity but i no longer believe it is aimed towards the vagus nerve as this would eventually cause vagus nerve damage which has unique symptoms rarely seen in cfs (in fact in terms of the gut the symptom is the exact opposite of the diarrhea usually seen in cfs.) However upon my reading I came across this http://en.wikipedia.org/wiki/Vagus_nerve_stimulation If you look at the side effects listed sleep diruption is a major one and also under ''other'' many of the non-specific symptoms sound familiar... for this reason I believe that the autoimmunity is directed somewhere else (as of yet i'm undecided but the sensory nervous system seems likely to me) but this other system or organ must be in close proximity to a vagus nerve input and hence the autoimmune response causes overstimulation of the vagus nerve leading to a whole host of non-specific symptoms complicating the clinical picture. One thing that stands out to me from the wikipedia entry is the sore throat symptom from this stimulation which is incredibly common in cfs patients. It would also explain why personally whenever I have an upset stomach everything else seems so much worse as the upset stomach like most everything else is a by-product of this vagus overstimulation. Furthermore such a cause would explain why symptoms fluctuate in most patients between good and bad days as the level of vagus stimulation will differ depending upon the level of autoimmune activity. With every new research article I read, new ideas abound. I hope one day i can recover to a stage where i can complete my degree and go into cfs research myself. Andrew (19)
Have you looked at existing research, Andrew? There is a huge document you can download here for example:

http://www.meresearch.org.uk/information/researchdbase/index.html

and you can find some on this site too.

My own current view from research I have read is that the gut is the source of the illness in many people, and that this is the case for post-exertional malaise (PEM) too. I think it is due to acidosis/hyperlactaemia. We produce too much lactate/lactic acid in our muscles, creating a hyperlactaemic state which feeds back to the gut. Maybe the vagus nerve is affected at that stage. The reason we produce too much lactic acid in the muscles may be a consequence of autoimmunity, perhaps something attacking the mitochondria.

Many of us seem to have abnormal carbohydrate metabolism (also leading to acidosis, this time in the gut), and are sensitive to gluten, and have noticed considerable improvements since making dietary changes. So there could be a vicious cycle going on, with gut acidosis/leaky gut triggering the production of autoantibodies, which impair muscle function, leading to acidification there too, and feeding back and acidifying the gut again, perpetuating the leaky gut. Gut flora are involved, so that we need to rebalance them in favour of the non-acidifying ones, which can be done through diet and supplements. Attacking the acidity on several fronts simultaneously is the answer, I think.

Apologies for reposting this from another thread where I posted it yesterday (and a few other places previously), but this paper shows how leaky gut can lead to autoimmunity:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2886850/

and this one claims that treating leaky gut can treat ME/CFS, with reference to autoimmunity:

http://integrativehealthconnection....1/Leaky-gut-in-CFS-treatment-of-leaky-gut.pdf

I think a lot of us are trying this, including myself, and I have seen many significant improvements.

What are/were you studying?