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MARK CAMENZIND's avatar

I love the work at Scripps and Eric Topol Ground Truths. Can VNS be tried for inflammatory diseases disabling millions, incl M.E., Myalgic Encephalomyelitis/cfs and Long Covid that are similar and have "Brain Fog", other neurological issues? Hope Kevin could work on ME/cfs. How is clinical study with Natelson in NY NY progressing for some with Long Covid, triggering ME/cfs, using auricular nerve stimulation? Can other methods like VERelief etc on neck be trialed? https://clinicaltrials.gov/study/NCT06585254

J Lee MD PhD's avatar

This is Dynamite.

Dianne Parsons's avatar

Last good book I read many years ago on a related subject was by David Goldstein at NIH

Dianne Parsons's avatar

Was just wondering about this for hyperadrenergic POTS. My 42 year old son was diagnosed many years back by Philip Low at Mayo, and Mayo neuro has been treating it at the margins... most lately with Ivabradine

Eric Topol's avatar

It sure has a reasonable chance to help so I would suggest consulting with Dr. Tracey at Northwell

Michael's avatar

Understanding that the the transcutaneous auricle VNS is not validated by rigorous studies, I would like to try it for arthritis which isn’t debilitating but is distracting. I found a few devices for sale to consumers. The prices vary greatly and I have no way to judge the quality. Would Dr. Tracy be willing to say which one he uses? Or what I should look for in a device? I understand that he is not making a recommendation but knowing which one he uses would give me some confidence that the purchase might not be a complete waste of money.

MARK CAMENZIND's avatar

Kevin Tracey may be associated with SetPoint Medical that does an implanted VNS. We need more studies of simple, lower costs, low risk external VNS devices. We are trying VERelief for neck stimulation, with options incl 8, 25, 100 Hz I think. Would love to see more trials incl for ME/cfs/LongCovid/Chronic Lyme etc.

Irena Boostani's avatar

So, this might work for chronic Lyme?

Eric Topol's avatar

Possible. Needs to be assessed!

MARK CAMENZIND's avatar

Great idea. You might look at Auricular VNS clinical trial with Natelson in NY NY for Long Covid/ME/cfs that can be similar to chronic Lyme: https://clinicaltrials.gov/study/NCT06585254

Irena Boostani's avatar

Thank you so much, Mark! Will look into it. My daughter (now 22) got diagnosed three years ago, and although it was caught fairly early, she is still experiencing on-and-off fatigue and compromised immune system.

Ananisapta's avatar

I will be especially interested if VNS seems useful for hereditary hypercholesterolemia in people who can't tolerate statins or ezetimbe or evolocumab due to crippling tendonitis reactions. Is there any effective treatment that NEVER causes such side-effects?

Krissy Goodman's avatar

Thank you so much for this interview and all of the work you do, Dr. Topol. Can you share which devise Dr. Tracey uses as an auricular stimulator--he mentioned it but I did not catch the brand name.

Ulrike Wachter's avatar

Incredible interview - thank you both. For those working in VNS: which parts of current VNS research are still most manual or heuristic-driven? I'm a data scientist about to start my PhD and am exploring where novel ML/AI methods could add real value (e.g. deep phenotyping, responder prediction, automatic signal interpretation, closed-loop optimization).

DrVickyV's avatar

Any chance this will help Long-COVID dysautonomia symptoms? Update…thanks for asking this. I jumped in too early. ☺️

LT's avatar

Thanks for this excellent interview. As others have asked, would it be possible to ask Dr. Tracey the name of the auricular stimulator he recommends?

S Koontz's avatar

would this help with pyoderma gangrenosum that may be related to rheumatoid arthritis or not.

Francesca Bossert's avatar

HI, I suffer from IBD microscopic collagenous colitis, entyvio failed me, but Remicade worked. However the side effects are intense. Can you tell me which one Kelly was on - the video went pixelated as you spoke so I couldn't hear. Thank you so much!

SJM's avatar

Thank you Dr. Topol...fascinating.

Can you comment on the use of VNS for cachexia? My husband is 83 with no cancer diagnosis, is APOe3/APOe4, is 83, and is experiencing cachexia.

Eric Topol's avatar

I'm not familiar with reports of VNS for cachexia but you can do a Deep Research query at Gemini or another genAI platform to check it out.

G. Sitta Sittampalam's avatar

Great video and article. Thanks Eric! amazing! from Drug to a simple device is a holy grail!

We are struggling with my daughter-in law 39 yrs with MuSK positive Myasthenia Gravis. Her rituximab treament helps, but not completely. Is there any information on generalized MG/ MuSL positive or AchR MG and Vagus nerve stimulation? We will greatly appreciate anyone here or Kevin Tracey at Northwell knows anything about it.

As Dianne says below a friend of mine has POTS--that will also help.