1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Time Change Equals Jet Lag, ME/CFS Style
Jody Smith marvels at how much difference one hour can make to those with ME/CFS, as much of the world has endured The Time Change in recent weeks ...
Discuss the article on the Forums.

Chronic fatigue syndrome from vagus nerve infection: psychoneuroimmunological hypothesis

Discussion in 'Latest ME/CFS Research' started by Ecoclimber, Jun 23, 2013.

  1. searcher

    searcher

    Messages:
    429
    Likes:
    1,078
    SF Bay Area
    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.
  2. Valentijn

    Valentijn Activity Level: 3

    Messages:
    4,794
    Likes:
    5,152
    Amersfoort, Netherlands
    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!"
    Tito likes this.
  3. MeSci

    MeSci Activity level: 6

    Messages:
    2,288
    Likes:
    2,407
    Cornwall, UK
    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!
  4. Firestormm

    Firestormm Content Team Lead

    Messages:
    5,278
    Likes:
    4,669
    Cornwall England
  5. MeSci

    MeSci Activity level: 6

    Messages:
    2,288
    Likes:
    2,407
    Cornwall, UK
    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...?
  6. searcher

    searcher

    Messages:
    429
    Likes:
    1,078
    SF Bay Area
    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.
  7. MeSci

    MeSci Activity level: 6

    Messages:
    2,288
    Likes:
    2,407
    Cornwall, UK
    [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'.
  8. Hip

    Hip Senior Member

    Messages:
    2,271
    Likes:
    1,757
    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.
    Valentijn likes this.
  9. natasa778

    natasa778 Senior Member

    Messages:
    1,246
    Likes:
    825
    London UK
  10. Firestormm

    Firestormm Content Team Lead

    Messages:
    5,278
    Likes:
    4,669
    Cornwall England
    ME Research UK from their Facebook page 12 July 2013:

    beaverfury and MeSci like this.
  11. Firestormm

    Firestormm Content Team Lead

    Messages:
    5,278
    Likes:
    4,669
    Cornwall England
    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 likes this.
  12. MeSci

    MeSci Activity level: 6

    Messages:
    2,288
    Likes:
    2,407
    Cornwall, UK
    Good link. It's clear that any damage or infection of the vagus could cause a huge range of conditions.
  13. beaverfury

    beaverfury beaverfury

    Messages:
    401
    Likes:
    399
    West Australia
    [​IMG]

    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.
  14. Sasha

    Sasha Fine, thank you

    Messages:
    6,999
    Likes:
    4,566
    UK
  15. MeSci

    MeSci Activity level: 6

    Messages:
    2,288
    Likes:
    2,407
    Cornwall, UK
    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.
  16. MeSci

    MeSci Activity level: 6

    Messages:
    2,288
    Likes:
    2,407
    Cornwall, UK
    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 likes this.
  17. Valentijn

    Valentijn Activity Level: 3

    Messages:
    4,794
    Likes:
    5,152
    Amersfoort, Netherlands
    Well, she didn't speak any English really, and said it in Dutch. And the patient/patience pun wouldn't work in Dutch :p
    MeSci likes this.
  18. Legendrew

    Legendrew

    Messages:
    452
    Likes:
    540
    UK
    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)
  19. MeSci

    MeSci Activity level: 6

    Messages:
    2,288
    Likes:
    2,407
    Cornwall, UK
    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.
  20. Legendrew

    Legendrew

    Messages:
    452
    Likes:
    540
    UK
    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)
    Mark likes this.

See more popular forum discussions.

Share This Page