Researcher Interactions Video: Science for ME Q&A with Dr José G. Montoya, 16th January 2018

https://www.youtube.com/watch?v=FarVtTHmKLc

Slightly adapted text from video description:

Science for ME were delighted to record this Q&A session with Stanford University's Dr José G. Montoya.

Dr Montoya, among a number of positions, is head of the ME/CFS Initiative at Stanford University (http://med.stanford.edu/chronicfatiguesyndrome.html and https://www.facebook.com/StanfordCFSInitiative/).

The vision of this Initiative is to:

• Identify biomarkers associated with chronic unexplained illnesses, including ME/CFS, with the aim of translating that knowledge into early diagnoses and effective treatments
• Become a clinical center of excellence for the diagnosis and treatment of patients with suspected or confirmed chronic unexplained illnesses, including ME/CFS and chronic Lyme disease (CLD)
• Provide leadership and education in the field of infection-associated chronic unexplained illnesses

Donations to help the efforts of ME/CFS Initiative can be made at http://med.stanford.edu/chronicfatiguesyndrome/donate.html

In this video Q&A Dr Montoya mentions on a number of occasions a brain study, from 2014, showing abnormalities in patients - more details can be found in this press release from Stanford, http://med.stanford.edu/news/all-ne...bnormalities-in-chronic-fatigue-patients.html, while the published paper can be found here, http://pubs.rsna.org/doi/abs/10.1148/radiol.14141079. S4ME discussion thread on this study is here, https://www.s4me.info/threads/right...igue-syndrome-2014-zeineh-montaya-et-al.1978/

Note from me: Yes that is me in the video! I actually hadn't intended showing myself but inexperience with the software meant you can see me - I'm not sure if that is a good thing or not. And, as I say in the video, we had nowhere near enough time to cover all the questions submitted, so hopefully we will get another opportunity to cover some more in the future.

 

Bump! And also reserving post for future possible need.

 

I'm already watching it, as I get alerts from the Science for ME Youtube channel when something new is uploaded. Very interesting and nice to meet you in person @Andy, well done! Thank you to all involved!

 

Thank you so much Andy, I will try to watch it later when I feel sharper.

 

I will be posting this as widely as possible
Thanks to all who enabled this, and worked hard to produce the video - hopefully the first of many

 

Awesome, thanks @Amw66

 

Thanks Andy and Dr Montoya.

 

Thank you Dr Montoya, I think I must have got something in my eye when you talked about hope and the PwME who have taken their own lives at the end though...

Fantastic @Andy you did so well and it's lovely to see the face behind the Kiefer!

And a big thank you to @Ron

I'm really looking forward to more of these and very proud to be part of S4ME

 

Thanks Liv

Trying not to pick too many holes in how I did given that's my first time doing this sort of thing, and I'll remember to practice "pyruvate dehydrogenase" for next time.

 

Thanks, @Andy, great job - and thanks to Dr Montoya.

I thought this was a great format.

 

Well done @Andy, thank you very much for doing that, and doing it so well and thank you to José Montoya for taking part.

It's a very interesting interview. It's so nice to listen to someone who is passionate, compassionate, intelligent and sane, plus practical and capable. It makes me hopeful (even though he did say it would be a few more years at least...)

Feeling the for José and S4ME

 

Andy is as handsome as his Avatar! His accent is adorable, and is obviously intelligent to boot!

Muchas gracias to Dr Montoya, @Andy, and @Ron

 

Yes me too. From my brief encounter, I deduced he is kind and caring in person too!

 

Just finished the video, amazing. Really very, very well done @Andy! Prof. Montoya didn't wear the flat cap I was hoping for but extra points for your charming English accent. I wish the BPS-proponents would watch this video as an example how we cooperate with and support real researchers.

Prof. Montoya seems like such a polite, likeable, compassionate and intelligent person, but @Indigophoton already listed all the right English adjectives! Beautiful what Montoya said in the end.

This question is a little late, but do we know why he became interested in ME research in the first place?

As you were mentioned @Ron, did you provide the contact to Prof. Montoya? Thank you very much!

(Sorry, very tired, so fragmented post.)

 

Why thank you very much. I'm trying to resist my typical English sense of unease at being complimented and accept your kind comments graciously.

Fingers crossed this will be the first in a series of videos with Dr Montoya, so we can hopefully ask him in the next one.

Yes, he was kind enough to pass on contact details to us - we are pursuing a number of other leads we have received in a similar way from other forum members.

 

I succeeded in learning “pyruvate dehydrogenase” after that exciting study happened, but now I have to learn an even worse term “right anterior arcuate fasciculus”, along with terms for other brain structures. At some point I may be batting such words around easily but my first response is always want to close down my mind as I doubt I could ever understand. Always what I most want is for someone to translate into more familiar terms and ideas.

 

That was truly excellent. What really struck me with Dr. Montoya was: Here I am listening to one of the great medical science minds on the planet, and yet there is not a whiff of arrogance about him at all, happy to explain his work and thoughts to us, with no hint at all of trying to impress with how clever he is. (The wacky notion crossed my mind, with how much that would contrast with a similar event with SW!)

I thought Dr. Montoya's diabetes example hit the spot for me. To answer a question he stepped back and seemed to work on how clearly he could explain his point, not how complicated!

And aside from all that, he seems a very decent man. He sounds quite confident for the future, so let's hope he is right.

And you were great @Andy, really well done. This sort of thing really is at the heart of what S4ME is about.

So big thanks to Dr. Montoya, @Andy and @Ron.

 

I agree with your words about Andy but Dr. Montoya was also interesting to listen to

Thanks @Andy and Dr. Montoya.

 

Flattery will get you everywhere..

 

Interesting about the herpes virus (HHV-6);
"Like the other herpesviruses—Epstein Barr virus, chicken pox, herpes simplex—HHV-6 establishes life-long latency and can become reactivated later in life. This reactivation has been associated with many clinical manifestations that can be seen in the “Associated Conditions” section of this site. Reactivation can occur in the brain, lungs, heart, kidney and gastrointestinal tract, especially in patients with immune deficiencies and transplant patients. In some cases, HHV-6 reactivation in the brain tissue can cause cognitive dysfunction, permanent disability and death. Except in acute or initial infections, the viral DNA can typically be found only by biopsy, as it does not circulate in peripheral blood."

"A growing number of studies also suggest that HHV-6 may play a role in a subset of patients with chronic conditions. HHV-6A has recently been found in the uterus of women with infertility, in the thyroid tissue of patients with Hashimoto’s thyroiditis and has been suggested as a trigger for a subset of MS and chronic fatigue syndrome cases."

https://hhv-6foundation.org/what-is-hhv-6

Hillary Johnson raised this in Oslers Web back in the 90's:
https://daks2k3a4ib2z.cloudfront.ne...8e52ebfda8db000183692e_Nadler,+Shalala,+3.pdf

As for the $25m.........
"Hillary Johnson's Osler’s Web broke the story of the CDC’s theft of approximately 150 million taxpayer dollars, money a concerned Congress sent to the agency to conduct M.E. research beginning in 1988. Her book revealed that agency heads had lied repeatedly to Congress about CDC’s progress in the disease in order to keep taxpayer money flowing into CDC coffers for middle-level staffers to use on anything but M.E. Lying to Congress is a felony. In Atlanta, far from the halls of Congress, agency insiders called the M.E. slush fund "the goose that laid the golden egg." Johnson delineated how agency staff colluded from the lowest to the highest levels of the agency to accomplish their crimes and revealed how the money had been misspent."

https://www.oslersweb.com/the-book