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Electronic Devices to Revolutionise Treatment of Auto-Immune Disease?

Discussion in 'Other Health News and Research' started by bertiedog, Sep 15, 2016.

  1. bertiedog

    bertiedog Senior Member

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    I don't expect many of you got to see this fascinating segment from the BBC's Trust Me I am a Doctor. However there is a clip you can watch under -

    www.bbc.co.uk/trustme

    The segment was called "Could electronic devices revolutionise the treatment of auto-immune diseases" and they illustrated how a tiny electronic device inserted into the vagus nerve eliminated the symptoms of the illness of Rheumatoid Arthritis to the degree the Consultant could find no evidence of disease.

    I wondered if it had relevance for ME/CFS patients if the auto-immune theory pans out?

    Pam
     
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    bwhahahaaha!!

    One of my triggers is when any one says 'trust me' or 'believe me' (I'm talkin to you Donald Frump), it immediately sends up red flags for me. My automatic thought is sociopathic charlatan.

    But to combine 'trust me' and 'doctor' given my (our) experiences with the medical system, creates a double trigger that to me is absurd.

    He says 'trust me I'm a doctor' and I hear 'run, do not walk away'.
     
  3. Sasha

    Sasha Fine, thank you

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    Did you see this, @Jonathan Edwards?

    I haven't seen it yet.
     
  4. Cheesus

    Cheesus Senior Member

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    I found your comment entertaining, but to be fair to Michael Mosley I usually find him quite open minded and interesting.
     
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  5. Cheesus

    Cheesus Senior Member

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    For anyone interested in non-surgical solutions to vagus nerve stimulation, here is a post I made and an article from Cort you may be interested in:

    http://forums.phoenixrising.me/inde...-vagus-nerve-stimulation-via-earphones.46593/

    http://www.healthrising.org/blog/20...-fibromyalgia-chronic-fatigue-syndrome-mecfs/

    The Nervana in the post I made is the cheapest option. It wasn't out when Cort wrote his article.
     
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  6. anciendaze

    anciendaze Senior Member

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    I have had an implanted vagus nerve stimulator for 10 years. The original indication was called "treatment refractory depression". I am still stuck with that diagnosis. I have repeatedly asked if there were competent doctors in the area treating dysautonomia, because my problems with orthostatic intolerance and orthostatic hypotension decreased after the implant. No doctor I have consulted will admit to having heard of such specialists nearby, though there are some listed at distances that would be a problem for me.

    When the battery in my implant died this year my first notice came when I collapsed in Walmart because I was stuck in a line for 20 minutes. (Did you hear the one about closing dozens of stores and laying off 14 checkout clerks?) I have no means myself to read out the state of the device, and had to go to the doctor to confirm that it had problems, though it was not completely dead.

    During the time when the implant was functioning poorly my orthostatic tolerance decreased and I had a whole series of back problems, but strangely they were not localized to a single place. With a psychiatric label it is clear to any doctor that these are psychosomatic problems.

    I had a few minutes to talk with the neurosurgeon when he released me after replacing the implant. I pointed out the strange behavior of my blood pressure while standing, and the way my hands turn cold as evidence of dysautonomia. I also said that even though no evidence of a seizure disorder had been found in me there was the possibility repeated episodes of ischemia would cause nerve damage leading to a seizure disorder. Was it possible some of the patients he was treating for seizure disorders with VNS implants could have had these prevented if the autonomic/circulatory problems had been addressed before seizures appeared? He agreed this was possible, and was in a thoughtful mood when I left.

    There is some evidence rheumatoid arthritis (RA) starts with ischemia and hypoxia at joints while upright. It is hard to find this in medical literature because at the time this takes place the disease is not called RA.
     
    Last edited: Sep 15, 2016
  7. cman89

    cman89 Senior Member

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    There have been several researchers that have looked at ANS issues and the role that that can tie into not only ME but other autoimmune issues. I do think that the response of the immune system, especially microglial cells to infection is one of the key components of levels of disability for ME/Fibro and other conditions. This could even be one of the "triggering" events for Robert Navaiaux's Dauer hypothesis, in that mitochondrial reduction is forced on a systemic level by the severity of brain inflammation response. Maybe part of the success of Rituximab and even some of the antibiotics/antivirals is they get the microglia to stand down and the immune system to both strengthen its defense and weaken its attack on ourselves. The vagus nerve is the conduit from the gut to the brain , so it is understandable that these issues can be co-morbid. RA is a bit more straightforward though, however that does not mean that Vagus stimulation could be a major therapeutic treatment for ME. I think it , when engineered correctly, could alleviate many of the more severe symptoms.
     
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  8. bertiedog

    bertiedog Senior Member

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    You are definitely missing the point and maybe missing something significant because its the BBC that happen to give that programme its name. They test out many different theories and hypotheses and look for answers and are generally open minded plus they will admit when they are surprised with what they find. I agree though some of their testing is extremely basic however that does not apply to the item that I quoted in my post above as the device that was implanted actually completely reversed the patient's condition of RA. The only visible reminder that she had of her previous illness was that she had distorted joints in her fingers.

    Furthermore during that edition of the show another finding that surprised the doctor concerned was that when 2 groups of people were given either gluten-free or normal pasta to eat over a period of about 5 weeks, about 90% of the participants wanted to stay gluten free because they felt so much better. Some of them had been sceptics to start off with and they hand't expected the results especially when the doctor mentioned that lab work showed there were no changes to the mmune system markers.

    Pam
     
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  9. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    @bertiedog I was definitely not commenting on the content of the video (Mosley is entertaining), just that the term "trust me I'm a doctor" is a trigger for me. That was all.
     
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  10. anciendaze

    anciendaze Senior Member

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    In case anyone has been misled by my post above, I am far from free of symptoms. The VNS implant, even when adjusted and working correctly, is not a cure. These are palliative measures which seldom result in cures, but do reduce problematic symptoms. It certainly does point to a physiological illness, and in my opinion one involving vascular insufficiency while upright. RA is not the only autoimmune disease treated with VNS implants. They have also been used in MS, not to mention refractory migraines.

    These devices, and the surgery, are expensive. Nor can I say the device is without side effects, I had an episode of esophageal spasms when the device was set too high, and I needed someone else to drive me to the doctor because I didn't know when I would be doubled over. (It would have made sense to disable the device with the strong magnet I had been given, which I had lost. Refrigerator magnets did not work.) Some epileptics have died because the device was set up incorrectly, causing seizures rather than preventing them.

    The important clue which is being widely ignored is that autoimmune responses, nerve damage and even seizures are known as consequences of localized ischemia affecting nerves. (The role of vascular insufficiency in MS has been controversial, so I will only mention this for those who want to look deeper.) What is more striking to me, is that we are now talking about potential interventions which may prevent development of disabling chronic diseases like epilepsy or RA. Current practice offers no such opportunity.

    I'm not the only person who has noticed that autoimmune or neurological diseases may have such an etiology. Also, don't think the role of immunity in neurological disease works in only one direction. Considering the poor prognosis for many such conditions, and the current complete lack of even the possibility of prevention, isn't it time to investigate the role of autonomic function and episodic localized ischemia in autoimmune and neurological disorders?
     
    Last edited: Sep 15, 2016
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  11. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    People have being trying this for a while and none of my rheumatological colleagues are impressed. The science is trivial and the guy on the video I would not take seriously. It might of course still work but if it had done so by now I think I would have heard about it.
     
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  12. bertiedog

    bertiedog Senior Member

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    Wasn't in the Netherlands that they were using the device and where the particular patient had gone into remission?

    Pam
     
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    There has been interest in the Netherlands and the USA. People with RA go into remission from time to time quite often. The idea has been around a while and one anecdotal case does not seem very impressive. The new treatments that actually have a big impact in RA became hot topics amongst my colleagues straight away. Nobody talks about this. The guy on the video talks about making treatment more specific or targeted but this seems to be as non specific as you can get - the vagus supplies almost everything.
     
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  14. Mary

    Mary Senior Member

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    Did you see this study? http://www.pnas.org/content/113/29/8284.full

    I have no idea if it will pan out but it certainly seems worthy of more study --
     
  15. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Yes. Paul Peter Tak is an old colleague of mine. To me the paper is a hodge lodge. There was a time when studies had to be cut and dried and have robust study design. These days a bit of this and a bit of that seems trendy. At least some of the studies seem to be beside the point. The big problem is that procedures like this stimulate endogenous cortisol production for quite some time, and also cause non specific counter irritation. It is relatively easy to get RA to improve with something distraction in the short term but in the long term it does not last. I am happy to think it might pan out but I have to ask why they have made such a muddle of it.
     
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  16. Mary

    Mary Senior Member

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    Thank you - I appreciate your input.
     

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