A hopeful message from Michael VanElzaaker

[Anomie]

Posted on Twitter about an hour ago:

#MECFS patients who follow me- please hold on. 2016 is going to be an important year. Don't give up. I know it's hard- do not lose hope.

From Cort:

Micheal Van Elzakker originated the Vagus Nerve Infection hypothesis for ME/CFS. The hypothesis suggests that small infections in or around the vagus nerve - the biggest nerve network in the body - are causing it to continually induce the brain to produce symptoms like fatigue, pain, etc. that are associated with infections. The vagus nerve is the conduit through which the vast majority immune signals from the body are sent to the brain.

Van Elzakker began a pilot MRI/PET study last year to see if he could detect inflammation where the vagus nerve joins the brain stem. Does his tweet suggest that he is finding what he was looking for?

Find out more here: One Theory To Explain Them All? The Vagus Nerve Infection Hypothesis for Chronic Fatigue Syndrome

 

[Remy]

Posted on Twitter about an hour ago:

#MECFS patients who follow me- please hold on. 2016 is going to be an important year. Don't give up. I know it's hard- do not lose hope.

From his lips to the universe's ears...I doubt he would want to give false hope, so this is exciting news!

 

[Anomie]

From his lips to the universe's ears...I doubt he would want to give false hope, so this is exciting news!

That's just how I felt Remy

 

[RuthAnn]

A teaser?

 

[Anomie]

It sure sounds that way! I think that I need to read some more about the vagus nerve.

 

[Gijs]

For the first time i am very positive too I know that he is going to find te cause for this disease because the PNS is broken ( for a subgroup!).

 

[San Diego]

If I’m not mistaken, his pet theory Vagal nerve infection?

I hate to be a Debbie Downer, but I have gotten burned so many times with these teasers that I am quite skeptical. Is it just me?

I guess eventually THE big news will come after a teaser. But in the meantime, I find that I just don’t get worked up over these anymore. That said, there is a lot going on in our field right now and that does help keep hope alive.

 

[IrisRV]

If I’m not mistaken, his pet theory Vagal nerve infection?

I hate to be a Debbie Downer, but I have gotten burned so many times with these teasers that I am quite skeptical. Is it just me?

I guess eventually THE big news will come after a teaser. But in the meantime, I find that I just don’t get worked up over these anymore. That said, there is a lot going on in our field right now and that does help keep hope alive.

I'm with you. I'm eager to hear what he has to say because it will be interesting. I'm not getting emotionally invested yet.

Something we need to keep in mind is that researchers don't think like we do. They think in decades; we think in months. They're thinking about making progress on the puzzle; we're looking for treatments.

Something he finds very exciting, and which we would also like, could be a big step forward for research, but wouldn't necessarily lead to a treatment in the next decade.

 

[Cort]

Posted on Twitter about an hour ago:

#MECFS patients who follow me- please hold on. 2016 is going to be an important year. Don't give up. I know it's hard- do not lose hope.

Love it! Thanks for passing that on!

Van Elzakker finally was able to get to his imaging tests in the last six months I think it was...It sound like he may be finding what he was looking for....(woo- woo!)

 

[Cort]

From his lips to the universe's ears...I doubt he would want to give false hope, so this is exciting news!

I agree - Van Elzakker is pretty darn careful...He hasn't said anything for a couple of years.

 

[Rosie26]

I think I better follow this guy!

 

[Seanko]

Tweet is below...note the spelling of his name... Van Elzakker

@MBVanElzakker

#MECFS patients who follow me- please hold on. 2016 is going to be an important year. Don't give up. I know it's hard- do not lose hope.
— Michael VanElzakker (@MBVanElzakker) 22 March 2016​

 

[weyland]

Van Elzakker finally was able to get to his imaging tests in the last six months I think it was...It sound like he may be finding what he was looking for....(woo- woo!)

Do you know what methodology he went with? Here's what he discussed in his paper:

In patients, magnetic resonance imaging (MRI) after injection of gadolinium can be used to detect viral lesions in tissue within the central nervous system [116]. This can only be accomplished within the central nervous system because gadolinium contrasting delineates a disruption of the blood–brain barrier and not a viral lesion per se. Live imaging of an infection in peripheral vagal paraganglia would be more difficult. In vivo electrophysiological recordings of vagus nerve are possible [117] but invasive. A new line of research should seek to develop novel protocols for resting-state and functional imaging of vagus nerve and brainstem NTS in CFS patients. In addition, the use of translocator protein radioligands in positron emission tomography (PET) imaging has shown promise as a method of imaging microglial activation in neurodegenerative disorder-induced neuroinflammation [118], and may prove valuable in CFS research. Such methods could provide both support for the general hypothesis and important information that could inform individual treatment strategies

The radioligand PET is of course what they used in the Nakatomi study which came out a year after Van Elzakker's paper, which as we all know showed neuroinflammation in the brainstem (though I believe not specifically in the medulla where the vagus nerve originates.) It would be really cool though if he was able to look further down and find the same evidence in paraganglia/ganglia.

 

[Cort]

Do you know what methodology he went with? Here's what he discussed in his paper:


The radioligand PET is of course what they used in the Nakatomi study which came out a year after Van Elzakker's paper, which as we all know showed neuroinflammation in the brainstem (though I believe not specifically in the medulla where the vagus nerve originates.) It would be really cool though if he was able to look further down and find the same evidence in paraganglia/ganglia.

I asked him in August of last year if the pilot study was started. He said it was. I met somebody at the Simmaron event in January who was helping fund him. She said the study was finally going and he said...

"The pilot study was already started, but I needed approval for a specific thing, which took a long time to get."

This is what he told Yasmina about the study

• http://thelowhistaminechef.com/harv...an-elzakker-chronic-fatigue-vagus-nerve-link/

Right now, we’re doing a study where we’re using a combined MR and PET, so magnetic resonance like when an athlete gets injured, they have an MRI scan. It’s got very good spatial resolution. You can really see clear pictures inside the body and that is combined with PET, or positron emission tomography, in which a research participant or patient is injected with a substance that the machine can detect. What we’re looking for is increased cellular activity in the brain stem in a place called the nucleus of the solitary tract, which is where about 80 percent of these sensory vagus nerve fibers have their cell bodies.

This is essentially the place where the vagus nerve enters the brain. The idea is that if we can see extra signal there, there’s more activity there in Chronic Fatigue Syndrome patients than there is in healthy people, that would be evidence that there’s an exaggerated signal coming from the vagus nerve into the brain.

He also said a latent infection in the trigeminal nerve could be doing something similar

Well, that’s very possible. One of the interesting things about these herpes viruses is that they go latent. All of us have herpes viruses in our body. More than 90 percent of human beings have more than one strain. Chicken pox, HSV-1, the simplex. We’re all walking around with these viruses in our bodies, but most of the time, they’re latent. People may have had the experience when they start to get a cold or a flu and they get a little cold sore on their tongue, that means when you’re immuno compromised, these herpes viruses can come back out of latency.

One of the interesting things about these that comes from mouse research is that in a different cranial nerve, that’s actually also a neuroimmune nerve, just like the vagus nerve, it’s called the trigeminal nerve. When there are latent viruses in the trigeminal nerve, they continue to cause a low level cytokine response, even though the viruses are not active. Even though they’re in latency, they still cause a cytokine response.

It could be the case that in Chronic Fatigue Syndrome, it’s usually triggered by a period of intense stress or a sort of otherwise normal cold or flu and then it never really resolves. What could happen is that if someone has a latent herpes virus embedded in their vagus nerve, or for that matter, trigeminal nerve, and it becomes reactivated, like a cold sore, right on that nerve, it can start causing this signal, which would be the initial experience of Chronic Fatigue Syndrome’s symptoms. But then it could even go back into latency and maintain that cytokine signaling that’s enough to cause ongoing symptoms.

 

[weyland]

I asked him in August of last year if the pilot study was started. He said it was. I met somebody at the Simmaron event in January who was helping fund him. She said the study was finally going and he said...

Cool, well that makes his tweet even more exciting. I hope that means we'll see something published this year.

 

[Cort]

Cool, well that makes his tweet even more exciting. I hope that means we'll see something published this year.

I emailed him. I'm afraid it's going to take a bit longer. Everything it seems takes longer than we think it will (lol). He said the study has different aspects and he hopes to have some of them done by the time the IACFS/ME conference begins in late October. He hopes his results will contribute to the growing neuroimmune understanding of ME/CFS. ..

 

[weyland]

I emailed him. I'm afraid it's going to take a bit longer. Everything it seems takes longer than we think it will (lol). He said the study has different aspects and he hopes to have some of them done by the time the IACFS/ME conference begins in late October. He hopes his results will contribute to the growing neuroimmune understanding of ME/CFS. ..

At this point I'm just happy to hear that he's actually working on it. The impression I had before was that it was something he wanted to work on but hadn't yet started, so he's already miles ahead of where I thought!

 

[Cort]

At this point I'm just happy to hear that he's actually working on it. The impression I had before was that it was something he wanted to work on but hadn't yet started, so he's already miles ahead of where I thought!

It took him quite awhile to get going! Given that he's exploring several angles I would assume that he's got funding and that it's going pretty well.