Top marks that man! Diagnosed in 2001 by which time I'd had ME for 10 years. My mother also has it. She waited 20 years for diagnosis so our symptoms started to emerge around the same age. The latest research really feels like it's heading in the right direction. By no stretch of the imagination can I fully understand the science, but it just makes an awful lot more sense than anything else that I've come across. What gets described here
The compression of the brain stem seems to explain why so many patients with ME/CFS/Fibromyalgia notice that their symptoms began after whiplash, neck injury or surgery. Jennefer Brea, of UNREST documentary fame has something called Tethered Cord Syndrome and Cervical spine instability, which they have identified as possible reasons she suffered from ME/CFS Her symptoms are in remission now after Thyroid cancer surgery. This is a very important element to really look into. Thanks for this great lecture.
This goes along with the Cell Danger Response CDR Hypothesis by Robert Naviaux, and Porges' Polyvagal ANS system leading to reduced ATP. So once in CFS state, any inflammatory situation (infection, food allergies, chemical/environmental) will exacerbate Microglia, sets off response and leads to CDR which leads to less ATP... so Vagus and Krebs cycle interlinked in vicious cycle.
Absolutely, these doctors today don't want to understand you said your body is one unit. Everything affects another area every single thing it's a horrible illness
Very pleased to see such stringent criteria (ICC) being used to determine cohorts. Proper screening out of confounding diagnoses is also very commendable as is using punch biopsy to assess SFPN status. If only all centres applied themselves to the work of creating proper research populations we might be much further on. As it is this work is fascinating and speaks loudly to my own presentation.
I think this man’s research is a great leap as to where to look for this….many people have said they had a virus, continued to get tired and unable to do exertion like ride a bike and then in a single moment they remember something switch in their heads and realising something was changing,,,for me I was in a university library and I felt like my head exploded and I felt something fundamental had happened….after that I couldn’t work out anything, speak coherently or find my way home….many autopsies have show disturbances from inflammation in the basal ganglia. Before that I had felt my spine and inside my head was ice cold and I couldn’t get it warm. Please forward this to the researcher if you would be so kind.
Many thanks for your hard work. I was diagnosed with Viral caused, moderate to severe ME as per Ramsay in 2009 and in 2012 as per the ICC. SPECT Scans were used in both diagnosis as definitive tests along with consults with a Cardiologist, ENT, Neurologist.
I had a number of epiphanies today after combing through research papers for the last few years, summed up nicely in this presentation. I certainly have to applaud your investigative style and data you and your team are collecting. When you mentioned TSPO, I got chills. It was by random chance i saw this video today and it will be immensely helpful in getting a treatment plan organized.
I feel like just the things talked about here and the autonomic (?) narrowing or lack of, of blood vessels, particularly in the limbs, could explain most of the disease...
Very interesting. I’m wondering if this could also be applied to long Covid? Long Covid patients tested positive for live virus in fecal matter long after they were negative in blood and nasal swabs. If the vagus nerve detects the live virus, as it surveys the gut microbiome, and then triggers the central neuroimmune response could that be an explanation for long Covid?
since the pituitary isn't entirely protected by the BBB, and if that gland malfunctions it can cause 'fatigue', wouldn't that make it a likely candidate for causing ME?
I have ME/CFS but I do not have POTS. How uncommon is that? I do have problem with the autonomic nervus system though. But it seems to be depending if I have PEM or not. I have measured autonomic dysfunction during a "light" PEM and when I'm in a better period I do not have autonomic dysfunction, or at least it's not that bad. I do think however I have undiagnosed PTSD syndrom as well. I'm wondering if that, left untreated also could lead to autonomic dysfunction?
@@KidCity1985 Funny you just answerded this since I have a doctors appointment in an hour and will be talking about this with him. I do have POTS according to my own measurments at home. When I stand up my heartrate is at least 100 and increase from there. And layingbdown 60-70 bpm most of the time. Now I'm thinking that POTS may be the more debilitating states. Maybe my ME isn't the biggest problem.
This is one of the best videos I've ever seen on me/cfs. 27 years here.
What a brillant young neuroscientist. Thank you very much, Dr. VanElzakker!
Thank you for your work. The ME community needs more folks like you. 🐥🐥🐥🐥🐥
Top marks that man! Diagnosed in 2001 by which time I'd had ME for 10 years. My mother also has it. She waited 20 years for diagnosis so our symptoms started to emerge around the same age. The latest research really feels like it's heading in the right direction. By no stretch of the imagination can I fully understand the science, but it just makes an awful lot more sense than anything else that I've come across. What gets described here
The compression of the brain stem seems to explain why so many patients with ME/CFS/Fibromyalgia notice that their symptoms began after whiplash, neck injury or surgery. Jennefer Brea, of UNREST documentary fame has something called Tethered Cord Syndrome and Cervical spine instability, which they have identified as possible reasons she suffered from ME/CFS Her symptoms are in remission now after Thyroid cancer surgery. This is a very important element to really look into. Thanks for this great lecture.
This goes along with the Cell Danger Response CDR Hypothesis by Robert Naviaux, and Porges' Polyvagal ANS system leading to reduced ATP. So once in CFS state, any inflammatory situation (infection, food allergies, chemical/environmental) will exacerbate Microglia, sets off response and leads to CDR which leads to less ATP... so Vagus and Krebs cycle interlinked in vicious cycle.
Absolutely, these doctors today don't want to understand you said your body is one unit. Everything affects another area every single thing it's a horrible illness
Someone buy that man a beer!
Yes - and someone should also give him a lifelong ME-research scholarship 💰💰💰. Bless him. 🙏
Very pleased to see such stringent criteria (ICC) being used to determine cohorts. Proper screening out of confounding diagnoses is also very commendable as is using punch biopsy to assess SFPN status. If only all centres applied themselves to the work of creating proper research populations we might be much further on. As it is this work is fascinating and speaks loudly to my own presentation.
A simple thank you isn't enough.
Great presentation. Love this guy, he really gets the big picture and ties a lot of things together
Mike you’re onto something here
I think this man’s research is a great leap as to where to look for this….many people have said they had a virus, continued to get tired and unable to do exertion like ride a bike and then in a single moment they remember something switch in their heads and realising something was changing,,,for me I was in a university library and I felt like my head exploded and I felt something fundamental had happened….after that I couldn’t work out anything, speak coherently or find my way home….many autopsies have show disturbances from inflammation in the basal ganglia. Before that I had felt my spine and inside my head was ice cold and I couldn’t get it warm. Please forward this to the researcher if you would be so kind.
Many thanks for your hard work. I was diagnosed with Viral caused, moderate to severe ME as per Ramsay in 2009 and in 2012 as per the ICC. SPECT Scans were used in both diagnosis as definitive tests along with consults with a Cardiologist, ENT, Neurologist.
How did you get this done? I don't think the state I live in even has the scans. Doctors dismiss me constantly. I've truly lost hope.
You are a great speaker for the lay man listener. Many thanks.
I had a number of epiphanies today after combing through research papers for the last few years, summed up nicely in this presentation. I certainly have to applaud your investigative style and data you and your team are collecting. When you mentioned TSPO, I got chills. It was by random chance i saw this video today and it will be immensely helpful in getting a treatment plan organized.
Thank you for your work Mike!
Great lecture
I feel like just the things talked about here and the autonomic (?) narrowing or lack of, of blood vessels, particularly in the limbs,
could explain most of the disease...
Very interesting. I’m wondering if this could also be applied to long Covid? Long Covid patients tested positive for live virus in fecal matter long after they were negative in blood and nasal swabs. If the vagus nerve detects the live virus, as it surveys the gut microbiome, and then triggers the central neuroimmune response could that be an explanation for long Covid?
Can a person with this A severe form Undergo chemo and radiation.???????
ME/CFS at the Intersection of the Nervous & Immune Systems & Everything else
What is the exclusion criteria?
since the pituitary isn't entirely protected by the BBB, and if that gland malfunctions it can cause 'fatigue', wouldn't that make it a likely candidate for causing ME?
How can I get a scan?
I have ME/CFS but I do not have POTS. How uncommon is that? I do have problem with the autonomic nervus system though. But it seems to be depending if I have PEM or not. I have measured autonomic dysfunction during a "light" PEM and when I'm in a better period I do not have autonomic dysfunction, or at least it's not that bad. I do think however I have undiagnosed PTSD syndrom as well. I'm wondering if that, left untreated also could lead to autonomic dysfunction?
I've had it it 25 years and only developed pots in the last yesr
@@KidCity1985 Funny you just answerded this since I have a doctors appointment in an hour and will be talking about this with him. I do have POTS according to my own measurments at home. When I stand up my heartrate is at least 100 and increase from there. And layingbdown 60-70 bpm most of the time. Now I'm thinking that POTS may be the more debilitating states. Maybe my ME isn't the biggest problem.
In this ME/CFS state the brain has problems. :) This video shows why.