Researcher Interactions Question collection thread for S4ME Q&A with Dr Michael VanElzakker

Mestinon - only relevant if antibodies is found? Or might it have other effects as well?

 

I think this would be a good question to ask all your scientist interviewees:

Can you explain, in plain English, the mechanism by which your hypothesis/your research results could explain PEM*?

Often - I'm not referring to VanElzakker here but talking in general - when scientists explain how their research could explain ME symptoms it's easy to follow how it could explain stable symptoms, or symptoms varying over long time periods, but it's not always clear how rapidly changing symptoms like in PEM can be accounted for.

* And that's "PEM" not as in the immediate exhaustion during or after exertion, that happens in many other conditions, but PEM as in the symptoms that appear delayed and seemingly unrelated to the original trigger, like walking leading to a sore throat, flu-like malaise, brain fog etc.

 

Amino Acids. Can they do any harm?

 

I would strongly second an interest in more brain stem studies as that is where I believe some key information can be found relating to slow processing speed, autonomic dysfunction and neuropathy, odd transient paralysis, breathing stoppages—?

 

.

 

I'd like to know Dr VanElzakker's thoughts on the ethical aspects of intentionally provoking PEM and other symptoms in order to study them, please. For example, what have their discussions been like regarding the Exercise Challenge Study?

Could he also please explain what the exercise challenge involves?

In case of harms, what's their plan for reporting data on harms? Do they have plans for long-term follow ups and reporting?

 

Time for asking questions is now closed, I'll update this thread when I post the Q&A.

 

Great, really looking forward to this.

I feel like adding that the premise of my (and I assume others) questions of course is that we understand he is not allowed to give medical advice, that we need to discuss with our doctor before considering starting anything etc. Still, I really do hope that he feel able to speak freely without limits

 

Hi @Andy I’m Lunarainbow’s mum. She has been wanting to send a few questions to Dr Van Elzakkar for a while now and wasn’t in a state during the past week to even dictate to me. It’s only today she is feeling a bit better and was able to dictate.

She asks if you can please include her questions even though she’s some hours late. If not, that’s ok. We’ll try and send it to Dr Van Elzakkar later on.

1. Why is it that emotions and the emotional stress can affect ME in such a bad way? Do you have an insight into why you think this could be and what part the brain plays on this and could the vagus nerve play a part in this as well?

For example I was laughing a little bit this evening and even that caused me to have a crash. Even though this was a good emotion! I have not heard of any other illness where even small emotional changes or small amounts of stress can cause such a big physical reaction to the point that it can make someone become so extremely unwell. This is something that has always puzzled me. I have heard When some with ME watch TV programs they have to know in advance what the plot is because even a small amount of excitement and anticipation can trigger a relapse. If I told a doctor about this they would just tell me that my illness is psychosocial but I know that that is not the reason.


2. How do the recent research studies being done at Harvard tie into your Vagus nerve theory? For example what would need to show up on the scans in order to prove or disprove the vagus nerve theory?


3. Do you have thoughts on CCI, in particular could CCI caused by brain stem compression cause symptoms of ME like PEM, fatiguability, light and noise sensitivity, muscle and joint pain etc? It is confusing because the symptoms and clinical picture of CCI and cranial settling and related conditions already do have their own set of symptoms which do not tie in with these ME symptoms. In particular do you have thoughts on the validity of the theories being proposed in the Medium articles?


4. I remember seeing in one of your presentations that you mentioned hypoxia and low oxygen in the brain. Why do you think this could be occurring - What mechanisms can cause this? And could the hypoxia explain ME symptoms - I have heard the effects of hypoxia can be delayed so could this potentially be the cause of PEM?


5. One of the strangest things about the illness is the PEM which is typically delayed. Is there anything in the brain or the vagus nerve that could potentially explain a mechanism for this?


6. The light and noise sensitivity seen in ME and especially in severe and very severe ME is unlike any other light or noise sensitivity found in any other illness is far as I'm aware. (Also, severe motion sickness / movement sensitivity). It is so severe that sufferers become completely confined to their bedrooms and it seems to be very hard for the professionals and even doctors to understand as they’ve never come across something like this before. Are there any parts of the brain and any mechanisms in the brain, that if they went wrong, could contribute to this light and noise sensitivity, and also motion sickness?

 

Q&A can now be viewed via this thread, https://www.s4me.info/threads/video-science-for-me-q-a-with-dr-michael-vanelzakker-oct-2019.11791/