Interview with Harvard neuroscientist Dr. Michael Van ElZakker: chronic fatigue vagus nerve link

[cigana]

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

Yeah, perrier above said that Van Elzakker said that lying down flat just makes things worse...

 

[knackers323]

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?

Hi I tried raising the bed nut no effect. You find out if anyone benefited from a srimulator?

 

[Tom_Nightingale]

I'm going to borrow this post to share something hopefully helpful. Last year I participated in a vagus nerve simulation study for the rare syndrome Post Orgasmic Illness Syndrome. Shortly thereafter I developed problems with wanting to move/leave the house/memory in addition to POIS (which I'd always thought of as "chronic fatigue with an ironically pleasant trigger").

I've since become chronically fatigued. I've had POIS since puberty (I'm 30 now) but had been very physically active unless I was recovering from an orgasm (3-5 days). Now my life reads much like the majority of posts on this forum. I'm not certain why I've developed CFS/ME or if it had to do with me participating in the study (or stupidly using my own TENS unit to simulate the vagus transcutaneously). I am very excited to have stumbled across this scientist's work though, as it fits all the disparate theories that us guys with POIS have.

And yes, it's a men's disease. In my scouring POIS forums, there has been only one woman out of thousands of men to report symptoms like us. Which makes me very curious about the POIS population's value to the research going on there. The reason vagus nerve simulation was chosen as a theoretical treatment was that the vagus is absolutely central to orgasm. You can have a severed spine and still have an orgasm from genital stimulation. The male sex organs are whats interesting here, as the vagus wanders to many organs and guys with POIS are able to induce a serious fatigue illness via our genitalia. This podcast hits on how viruses can inhabit particular organs, and I'm so very curious about how the male specific genitalia could contribute to such a fatigue phenomenon.

I will be trying to get in touch with this researcher, perhaps the unique phenomenon that we can trigger a serious malaise readily might prove very useful? I sure would love to have a normal sex life for once in my existence!

 

[Forbin]

I think this idea that a direct vagus nerve infection produces an amplified sickness response is a fascinating hypothesis.

I'm not sure how you could prove it without finding the site of infection, which I imagine could be anywhere in the vagus nerve and quite small, but it's still very intriguing.

It's also interesting that, in some cases, ME/CFS seems to begin with something like a vaso-vagal attack. Dr. Ramsay's definition of ME mentions onset (in some cases) with a sudden attack of "vertigo," which is the main feature of a vaso-vagal episode.

Quite a few patients (myself included) also report a low resting pulse rate. I was also told that I have marked respiratory sinus arrhythmia - a benign condition in which the heart speeds up when inhaling and slows down when exhaling. My blood pressure is also noticeably higher when inhaling than when exhaling. These all appear to be features of high vagal tone.

As I recall, in otherwise healthy people high vagal tone is associated with lower mortality from cardiovascular events. Indeed, early in my illness, my doctor assumed I was an athlete due to my low resting pulse rate. Following a treadmill test, his view altered by 180 degrees and he assumed I was deconditioned. Frankly, I wouldn't say I was a athlete, but, as an active young man, neither was I deconditioned. It was an oddity of the illness that made it appear that I was both.

I'm not quite sure from the interview whether an alteration of vagal tone is a feature of the hypothesis, but the idea that there is some kind of effect on the vagus nerve - be it direct infection or a response to circulating cytokines from some other immune response - could (perhaps) be mucking with vagal tone while at the same time be signaling an exaggerated sickness response to the brain is interesting stuff.

[I do wonder if some kind of low level chronic infection in the lining of the intestine could produce this effect if it were in close contact with the vagus nerve in that location. The gut is certainly high on the suspect list in this disease.]

How this might relate to B-cells, autoimmunity and the rituximab effect is over my head, but I'm definitely intrigued by this idea.

 

[Little Bluestem]

I was also told that I have respiratory sinus arrhythmia - a benign condition in which the heart speeds up when inhaling and slows down when exhaling.

I can lower my heart rate with slow, deep breaths. When I exhale, my heart rate goes down. When I inhale, it comes back up, but not as high. After several repetitions, my heart rate is lower.

Indeed, early in my illness, my doctor assumed I was an athlete due to my low resting pulse rate.

I was not an athlete, but was active and fit when I got ME/CFS. My resting heart rate stayed low for several years.

 

[ryan31337]

As I understand it a change in HR during breathing is completely normal. What appears abnormal is the degree of change, which is greater for us. There was a good discussion in a POTS video I watched a while back, the HR change for controls was something like +/- 5bpm, for the POTS patients +/- 8bpm.

 

[Forbin]

I'd never noticed that my heart rate was slow until a couple of weeks after the onset of ME when a doctor put me on a beta blocker - presumably for "anxiety." This sent my heart rate down into the high 30's and I was I quickly taken off the drug. It then became obvious that my resting pulse was only about 50 - something neither I nor any doctor had noticed prior to the onset of ME.

 

[knackers323]

not sure if its connected to the vagas nerve but I urge everyone to try baclofen. it pretty much eliminates all the fatigue for a few hours. please try it. only small amounts are needed for me

 

[ryan31337]

I'd never noticed that my heart rate was slow until a couple of weeks after the onset of ME when a doctor put me on a beta blocker - presumably for "anxiety." This sent my heart rate down into the high 30's and I was I quickly taken off the drug. It then became obvious that my resting pulse was only about 50 - something neither I nor any doctor had noticed prior to the onset of ME.

Same here, mid-low 40s resting, down to 38bpm after taking a small dose of bisoprolol. Did your doctor give any reason for thinking it was too low? My GP wasn't happy about it dipping into the 30s but the electrophysiologist I saw wasn't concerned, presumably because it doesn't seem to cause overt symptoms for me.

 

[Forbin]

Same here, mid-low 40s resting, down to 38bpm after taking a small dose of bisoprolol. Did your doctor give any reason for thinking it was too low? My GP wasn't happy about it dipping into the 30s but the electrophysiologist I saw wasn't concerned, presumably because it doesn't seem to cause overt symptoms for me.

After trying to take smaller doses of the beta blocker, I woke up one morning with my hands feeling cold as ice. I think my doctor was concerned with how low my pulse might be getting while I slept, so he just told me to stop taking the drug.

Many years later, another doctor (a cardiologist) was concerned with my low resting pulse rate to the point that he thought I might need a pacemaker. I had a 24 hour Holter monitor to see how low it went during sleep. It must not have been too bad because at the next appointment the cardiologist said that the pacemaker idea was "off the table" (much to my relief).

 

[Sushi]

I think my doctor was concerned with how low my pulse might be getting while I slept, so he just told me to stop taking the drug.
.... I had a 24 hour Holter monitor to see how low it went during sleep.

I also have a low resting HR and am taking a drug that can lower it further. I wanted to monitor what was happening during sleep so got a Polar A300 HR monitor which syncs with a smart phone or computer and give me my HR as a graph for the period monitored. I find this very helpful--I can check the graph every morning.

 

[Justin30]

I'd never noticed that my heart rate was slow until a couple of weeks after the onset of ME when a doctor put me on a beta blocker - presumably for "anxiety." This sent my heart rate down into the high 30's and I was I quickly taken off the drug. It then became obvious that my resting pulse was only about 50 - something neither I nor any doctor had noticed prior to the onset of ME.

I had a similar experience accept it put me in the hospital....the alarm was going off for low blood pressure every 30 seconds.....could not talk, speak, it was messed up...

The nurse came over and turned off the alarm....said oh thats normal

My Mom who worked in a ward said not ots not!

People with this disease need answers to this disease NOW!

For an inexperienced Dr to just prescribe meds without testing first is not Ok....especially with this illness...

Makes me furious when I think of how you had a similar experience.....

this guy is supposedly a ME/CFS expert the one that failed to do any testing and gave me the beta blocker....he is by no means i later found out the implications of Beta Blockers how 50% can help and 50% can harm that was from a CFS book...

 

[Old Bones]

After trying to take smaller doses of the beta blocker, I woke up one morning with my hands feeling cold as ice.

I'm at the end of my first week on 1.25 mg of Bisoprolol (one-quarter of the smallest dose tablet available at my pharmacy). It definitely has had a lowering effect on my HR while upright -- enough that on the days I've checked, I no longer meet the criteria for POTS (at least, not at the start of the day). Surprisingly, it doesn't seem to have an effect at night, despite taking it at bedtime. I slept one night with a pulse oximeter, and it seems my oxygen level is lower with the beta blocker than without. Any ideas why?

But the worst thing is . . . I'm icy cold -- not just my hands and feet, but my entire body, especially bad after drinking a chilled beverage. At night, I'm now sleeping in fleecy full-length pyjamas under a doubled heavy duvet, plus a blanket, despite the temperature in the house being around 20 degrees C. Yesterday, my fingers turned a combination of blue and white -- a return of Raynaud's symptoms that improved post-ME. So, perhaps my high HR has been protective in this regard. I'm not sure how long I can tolerate feeling so cold. My next scheduled doctor's appointment isn't for another three weeks. Should I be trying to get in sooner? Might the icy coldness resolve on its own, as my body adapts to the medication?

 

[Forbin]

Yesterday, my fingers turned a combination of blue and white -- a return of Raynaud's symptoms that improved post-ME.

Were it me, I'd probably want to just give my doctor a quick call and double-check concerning the blue and white fingers.

 

[knackers323]

Anyone aware of any latest news from Van elzakker or anything relating to the vagus nerve?