Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Interview with Harvard neuroscientist Dr. Michael Van ElZakker: chronic fatigue vagus nerve link

Discussion in 'Latest ME/CFS Research' started by geraldt52, Dec 9, 2015.

  1. geraldt52

    geraldt52 Senior Member

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  2. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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  3. Bob

    Bob

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    Note that there a podcast, as well as the text.
     
  4. perrier

    perrier Senior Member

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    Interesting read indeed. Thanks.

    Two questions: 1) has anyone tried putting bricks at the head of their bed? Has it helped? He is suggesting that lying flat just makes things worse. Yet many folks are bedbound. 2) has anyone tried vagus nerve stimulation with say a biomodulator? Is there any evidence this device helps ME folks?
     
  5. SOC

    SOC

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    One of my students who has ME with primarily OI-type and gut symptoms has achieved significant improvement in those symptoms with a P-Stim device which provides vagus nerve stimulation, if I understand correctly. He is not cured. He still has bad days, but they are much more infrequent. PEM doesn't seem to have changed. So, it wasn't an overall treatment, but he feels much better and he can accomplish more. He is not well enough to return to school, but is able to keep up academically at home now.

    I do not understand the principle behind this treatment or why it worked, to some extent, for this particular patient. My guess is that it improved the dysautonomia associated with his ME, but not other aspects of the illness.
     
    cigana likes this.
  6. SDSue

    SDSue Southeast

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    Do we know what type of doc prescribed this, and what diagnosis they used for insurance approval? Thanks!
     
  7. JPV

    JPV ɹǝqɯǝɯ ɹoıuǝs

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  8. SOC

    SOC

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    I probably heard, but forgot. I'll ask.

    ETA: Oops forgot to ask today. :oops: If I don't come back with an answer in the next day or so, please remind me. My memory is not what it used to be. :(
     
    Last edited: Dec 14, 2015
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  9. cigana

    cigana Senior Member

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    Anecdotally, I've often noticed an improvement if I don't stay in bed for long - i.e. if I have to get up early for some reason and only have about 6 hours lying down rather than the usual 10 hours, I often notice my fatigue is reduced a little.
     
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  10. SOC

    SOC

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    Okay, I got the info. :D

    P-Stim devices and the newer developments (NNS?) are generally prescribed by doctors who deal with pain, so any number of them are possibilities. It becomes a question of whether the particular doctor buys into the technology or not and can be bothered to know how to use it. Some types of doctors that have used vagus nerve stimulating devices -- neurologists, pain specialists, GI specialists, and even dentists.

    I got the impression that not all insurances would cover this treatment, but you would try to sell it as a treatment for pain.
     
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  11. M Paine

    M Paine Senior Member

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    I found this part curious, because it seems contradicted by findings of autoimmunity in patients, particularly the recent findings of elevated levels of β adrenergic and muscarinic acetylcholine receptor autoantibodies in some patients. I'd be interested to hear Dr Van ElZakker's take on this, and the Rituximab trials. Perhaps this quote is a little out of context, and he was talking about certain aspects of the pathology of this illness, rather than the illness as a whole.

    A very interesting discussion from a well spoken, well informed researcher.

    Nice to hear that someone is using novel technology to evaluate the innate side of pathology in the CNS as it relates to the Vagus nerve. Go Harvard. :thumbsup:
     
  12. South

    South Senior Member

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    Two ways to stimulate your vagus nerve yourself, according to Dr. Tunis Hunt: (http://drtunisjr.com)

    "The first exercise is to gargle with water several times a day. The vagus nerve activates the muscles in the back of the throat that allow you to gargle. Gargle each sip until you finish the glass of water. You should gargle long enough and deep enough to make it a bit challenging (until it produces tears). Do this several times per day for several weeks.

    Another method is with the gag reflex: Purchase a box of tongue depressors so you can stimulate your gag reflex throughout the day. Do not jab the back of your throat with tongue blade and hurt yourself, just lay the tongue depressor on the back of your tongue and push down to activate a gag reflex.

    Gag reflexes are like doing push-ups for the vagus while gargling is like doing sprints. It will take some time using these exercises to strengthen vagal tone and the gut-brain axis. You need to perform them for several weeks to produce change." he says.

    And another site promises 28 ways to stimulate your vagus nerve (I haven't read it all yet, it's long)
    http://selfhacked.com/2015/07/30/28...agus-nerve-and-all-you-need-to-know-about-it/
     
  13. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    I think I'll pass on the gag reflex thing. Gargling is less unpleasant.
     
  14. South

    South Senior Member

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    You could hum while you gargle, this covers yet another method of stimulating the vagus nerve: humming (yes, proven, just like the other two methods)
    :redface:

    I find that gargling while lying down flat on my back avoids neck strain if I'm going to gargle for more than a few seconds.
     
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  15. knackers323

    knackers323 Senior Member

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    same
     
  16. unto

    unto Senior Member

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    Sorry, knackers 323 and Cigana, you will not be by chance occult supporters of therapies
    CBT and GET ?????:D:nervous::)
     
  17. knackers323

    knackers323 Senior Member

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    no chance
     
  18. knackers323

    knackers323 Senior Member

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    Do you mean you feel better with less sleep?

    Can anyone tell me how less sleep ties in with this theory?
     
  19. cigana

    cigana Senior Member

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    I'd say some of my symptoms improve with less sleep (or at least with less lying down), though it's hard to put my finger on exactly wht is the difference in how I feel. It could also be something as simple as less sleep usually means I spend more time out of my house, so I may be avoiding mold for longer...
     
  20. knackers323

    knackers323 Senior Member

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    @cigana What made you mention this. Is it referenced elsewhere in this thread? I can't see where it applies. Thanks
     

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