I adore Mr. King and Dr VanElzakker! Not only do they have so much compassion for ME/CFS patients, but they are so good at talking about it in a way we can understand. 💙🙏🏻✨ So kind and down to earth! And generous with their time.
I’ve had CFS since 1994 which included a low grade fevers for 20 years until Rx’d with Valcyte. This past September I had emergency surgery due to a bacterial infection of unknown etiology in my spinal cord that destroyed several vertebrae and a disc diagnosed by inflammatory markers and MRI. Do you feel that there is any relationship between the two diagnosis? Per the usual, no MD involved in my osteomyelitis mentioned my 25 year diagnosis of CFS/ME. Thanks much for your dedication. And I agree, we don’t need to pile research money on all the poorly done research of our past. Sickens me to realize that scientists and doctors would do such unpublishable junk lacking numbers, control groups, replication, peer review, and publication. As well, until we agree on a universal definition we will have patients in studies who shouldn’t be included. We need to begin getting it right. I believe Fauci might would have allocated more money had we been doing good research as well my personal feelings that we need a national organization. Autopsy results. There’s a website that keeps up with patients whose cause of death is listed as ME by the way. Much thanks. Marcie Myers
It might not be a definitive test but we have known since the 1990s that most mecfs patients have low nk function and this has been replicated many times by Nancy Klimas as well as researchers in Australia. I dont understand why this test cant be used as a biomarker along with a good definition. I cant recall the test but there was another immune marker commonly found in mecfs, its not exclusive to mecfs and low nk function probably the same, but using them with a good definition can help narrow down the group of people they are trying to study, therefore more accurate. They can keep finding more biomarkers and maybe having subgroups etc and keep refining things instead of spinning their wheels.
Min 18:18, so telling about ME/CFS: You cannot tell everything that’s happening in the body by looking in peripheral blood... ESPECIALLY if it’s happening in the central nervous system. There is a rich detailed long literature demonstrating that repeatedly! Unfortunately the difficult, painful uneasy truth is that looking inside tissues is the best way to look at what’s happening in the tissues. So autopsy is unfortunately the best way to do that.”
This is an excellent interview. I read about the vagus nerve in a post by Cort Johnson in Health Rising. I am beginning to understand this aspect better between this interview and that post (which included a video of a presentation in Australia). I hope Mike gets funds from the money being thrown at long Covid.
Thank you for this...I am a 51 years old woman from Finland and I have suffered from a very severe cfs/me over 21 years and just been laying on my sofa alone trying to stay alive. My neck was broken and I also had pneumonia after a car accident in 1999...my fatigue and other symptoms started soon after that and never been okey since then. I used to be a competitive athlete before that.
Thanks to you both for such a great interview! I also wonder what makes people choose to focus on ME. Maybe there is something more than just the human connection? Perhaps an extra degree of curiosity and willingness to try and solve a particularly difficult and complex problem that has been stigmatized by society including many in the medical community. I think this also reveals ME researchers show a a rare compassion and respect to those who have been disbelieved and marginalized, and for that I am truly grateful!!
Not sure i understand the minority question. If one is in a minority group, just being in that group we will see less mecfs compared to the greater population. With Espanic groups you could say we arent seeing as many with mecfs. But if i recall correctly, there is significant mecfs research going on in Spain compared with other countries. So it makes me think that mecfs isnt discriminating as much as we think. Even between the sexes i dont think is so lopsided towards women. On one of the big mecfs forums there are alot of men but for some reason dont post as much, but they do personal message people more on the forums rather than post directly on a forum for everyone to read. Thats my observation of being on forums for almost 20yrs. Maybe its not reported as much by males or minority groups for some reason which may include access to certain health care. I do think women build better relationships with their drs as generally speaking have more health check ups related to being female, so it can be easier to bring other issues up. I think its impossible to know if a certain group of people are more likely to get mecfs until there is a definitive test, probably tests as im sure there will be subgroups.
Why do you believe in ME Michael? I'm a mum caring for a severe ME daughter, age 27, she has been unwell for 17 years, we live in Ohio., question for you, what test can she get if she has two 13 inch bars, and many screws in her back due to scoliosis.
Very, very often CFS is caused by (hidden) mold and water damaged buildings. Just look at Moldy movie! What helped me most to recover from it was very strict mold avoidance! Leayving all contaminated items and moving to pristine clean location. Best outdoors if you have helpers or if you can!
Thank you for your persistence. For giving your career to ME. We cannot get better without researchers like yourself. For that I am grateful 🙏🏻
I adore Mr. King and Dr VanElzakker! Not only do they have so much compassion for ME/CFS patients, but they are so good at talking about it in a way we can understand. 💙🙏🏻✨ So kind and down to earth! And generous with their time.
I’ve had CFS since 1994 which included a low grade fevers for 20 years until Rx’d with Valcyte. This past September I had emergency surgery due to a bacterial infection of unknown etiology in my spinal cord that destroyed several vertebrae and a disc diagnosed by inflammatory markers and MRI. Do you feel that there is any relationship between the two diagnosis? Per the usual, no MD involved in my osteomyelitis mentioned my 25 year diagnosis of CFS/ME. Thanks much for your dedication. And I agree, we don’t need to pile research money on all the poorly done research of our past. Sickens me to realize that scientists and doctors would do such unpublishable junk lacking numbers, control groups, replication, peer review, and publication. As well, until we agree on a universal definition we will have patients in studies who shouldn’t be included. We need to begin getting it right. I believe Fauci might would have allocated more money had we been doing good research as well my personal feelings that we need a national organization. Autopsy results. There’s a website that keeps up with patients whose cause of death is listed as ME by the way. Much thanks. Marcie Myers
It might not be a definitive test but we have known since the 1990s that most mecfs patients have low nk function and this has been replicated many times by Nancy Klimas as well as researchers in Australia. I dont understand why this test cant be used as a biomarker along with a good definition. I cant recall the test but there was another immune marker commonly found in mecfs, its not exclusive to mecfs and low nk function probably the same, but using them with a good definition can help narrow down the group of people they are trying to study, therefore more accurate. They can keep finding more biomarkers and maybe having subgroups etc and keep refining things instead of spinning their wheels.
Min 18:18, so telling about ME/CFS: You cannot tell everything that’s happening in the body by looking in peripheral blood... ESPECIALLY if it’s happening in the central nervous system. There is a rich detailed long literature demonstrating that repeatedly! Unfortunately the difficult, painful uneasy truth is that looking inside tissues is the best way to look at what’s happening in the tissues. So autopsy is unfortunately the best way to do that.”
The great awakening is about medicine and health too. If one wanted to let you autopsy them Dr. How would we go about setting that up?
This is an excellent interview. I read about the vagus nerve in a post by Cort Johnson in Health Rising. I am beginning to understand this aspect better between this interview and that post (which included a video of a presentation in Australia). I hope Mike gets funds from the money being thrown at long Covid.
Thank you for this...I am a 51 years old woman from Finland and I have suffered from a very severe cfs/me over 21 years and just been laying on my sofa alone trying to stay alive. My neck was broken and I also had pneumonia after a car accident in 1999...my fatigue and other symptoms started soon after that and never been okey since then. I used to be a competitive athlete before that.
I am so sorry. You have greatly suffered.
Sending you hope and comfort.
KT 💙
Are you any better now?
Thank you both for your work.
Thanks to you both for such a great interview! I also wonder what makes people choose to focus on ME. Maybe there is something more than just the human connection? Perhaps an extra degree of curiosity and willingness to try and solve a particularly difficult and complex problem that has been stigmatized by society including many in the medical community. I think this also reveals ME researchers show a a rare compassion and respect to those who have been disbelieved and marginalized, and for that I am truly grateful!!
Thanks for sharing 🙏👏❤
Sorry to hear Michael had COVID. I was only thinking the other day that he'd been quiet on social media. Good to see an interview with him.
Yes, I hope he will soon be back to full health. He is surely missed.
And with all respect due, you’re cute as a button and soft-souled. BE WELL.
But will anyone listen to those ME, I mean those that been unwell for 17 years, or will we still be ignored?
My daughter has said many times she would love to donate her body to ME research
Great interview, thanks for sharing
Not sure i understand the minority question. If one is in a minority group, just being in that group we will see less mecfs compared to the greater population.
With Espanic groups you could say we arent seeing as many with mecfs. But if i recall correctly, there is significant mecfs research going on in Spain compared with other countries. So it makes me think that mecfs isnt discriminating as much as we think.
Even between the sexes i dont think is so lopsided towards women. On one of the big mecfs forums there are alot of men but for some reason dont post as much, but they do personal message people more on the forums rather than post directly on a forum for everyone to read. Thats my observation of being on forums for almost 20yrs.
Maybe its not reported as much by males or minority groups for some reason which may include access to certain health care.
I do think women build better relationships with their drs as generally speaking have more health check ups related to being female, so it can be easier to bring other issues up.
I think its impossible to know if a certain group of people are more likely to get mecfs until there is a definitive test, probably tests as im sure there will be subgroups.
Why do you believe in ME Michael? I'm a mum caring for a severe ME daughter, age 27, she has been unwell for 17 years, we live in Ohio., question for you, what test can she get if she has two 13 inch bars, and many screws in her back due to scoliosis.
Sorry it looks like I'm asking alot of questions, thank you for caring and believing!!!
Very, very often CFS is caused by (hidden) mold and water damaged buildings. Just look at Moldy movie! What helped me most to recover from it was very strict mold avoidance! Leayving all contaminated items and moving to pristine clean location. Best outdoors if you have helpers or if you can!