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

Now published. Thank you very much for your efforts.

ETA: I'm working on a transcript for the video but I can't promise at the moment when I'll finish that.

 

Finally got to see it. Brilliant! Thanks a lot @Andy for all your work and thanks to dr. Montoya for his time and interesting answers. This was such a nice conversation touching on many different topics.

 

Thanks for the interview! Very nice to hear someone in this field acknowledge the disservice being done to patients and the importance of recognition and validation. I watched the following lecture by Dr Montoya as well which was also very good.

 

http://www.diycaptions.com/ should help (If I remember correctly)

 

also, i think there is a different way. (if my other suggestion does not work)

copy this code

Code:

http://video.google.com/timedtext?lang=en&v=

• put it in a browser window
• get the address of the video you want to download the subtitles from
• take the part after v= in the address
• add it to the copied code
• press enter

you should get the subtitles with the times etc.

If you select all (right-click) and copy, you should be able to paste the file in a text editor.

This will get you the english subtitles.
To get different languages, you replace the 'lang=en' in the first code of this post with the correct iso code for the language you want.
German for example would be 'de' so you change it to lang=de

A full list of the iso codes http://en.wikipedia.org/wiki/List_of_ISO_639-1_codes

I'm not sure if I've explained it well enough or clearly, so let me know

 

Thank you @Luther Blissett and will definitely check these out and let you know if it worked!

Totally forgot that you're so tech savvy - at the moment we're trying to figure out how to publish edits (edits that were made after the subtitles for the Youtube video were published). I'll try to make you a member of the conversation (haven't done that before) to not distract this thread further with my translation problems.

 

A little knowledge is a dangerous thing.

No one on the internet can hear me shouting at my algorithm.

 

Fantastic video. Can only agree with everyone else. Great to hear a bit about what is going on from such a warm and genuine gentleman. Thank heavens we have people like Dr Montoya fighting our corner.

And thank you Andy for putting this together, really great work. Yes please, really looking forward to more of the same.

So good to watch something about ME from someone who is so full of humility and hope for the future (even if it isn't exactly just around the corner quite yet!).

 

Thanks Andy and Ron, and most of all Dr Montoya - A very interesting and heartwarming interview.

Shame there was no time for my question, but i will keep on asking it to everyone in the hope that one day someone, somewhere, takes an interest in PWME with MCAS.

Also a little bit of something got stuck in my eye towards the end....

 

Thanks to you Andy; you were delightful. Thank you also to Ron and to Dr. Montoya. What a brilliant project this is! Absolutely urgent! Everyone's comments are right on. This doctor is appealing, humane, compassionate and highly intelligent.

His understanding of the high degree of suffering this illness entails, and the pull to suicide for some patients was very moving.

I was, however, unsettled to hear they will only crack it in a few years rather than sooner, and that likely because of a shortage of cash. This is criminal.

Andy, this is brilliant work.

 

I think its worth reiterating that while many have theories, I think Montoya is right to say that they cannot know for sure which is right, or which is the primary cause. Its the fable of the blind philosophers and the elephant all over again, except we are aware of just how blind we are.

The one thing I would like to make specific comment on is that Montoya confirmed that the fasciculi thickening is matched by connecting cortical thickening. This is itself confirmatory that something is going on. It tells us our brains are wired differently, and this is a structural change. For at least a subgroup this could prove very important.

For reference on what fasciculi are - https://medical-dictionary.thefreedictionary.com/fasciculi

 

Finally watched it, great job
And extra happy my question was the last one he addressed

 

Alex, what are your guesses about what this thickening means? To start with, does it necessarily mean that the nerve conduction is slowed down, impeded?

 

It might, or the fact its mostly right hemisphere might mean the left hemisphere equivalents are not working. What I want to see is a combination study on the same patient cohort, the type of MRI they are using to find the thickening, Japanese style inflammatory scans, and qEEG.

 

Thanks for the link. Is there anyone who cares to explain what the implications are of this "thickening" or even how this can arise, or if it is thickening due to inflammation. Thank you.

 

I think we cannot know yet. There are too many possibilities. The main implication is that, despite decades of being told otherwise, if this is replicated then we know we have observable structural changes in the brain. It might be diagnostic.

 

Did you mean to write instead, “the left hemisphere equivalents are working” since they aren’t thickened?

 

No, I meant the opposite, as I wrote. If the left hemisphere fasciculi are not working then the right hemisphere might be enlarged to compensate. However your interpretation could be right too. We just don't know.

 

Thanks, Alex. I am remembering an insult from childhood was “Thick head”! Then there was “Numb skull” and a few others. I laugh at myself and go on. Wouldn’t be surpised if there weren’t something like this happening inside...

 

The video has been public for around 12 days now and has had 1351 views, which I reckon is a pretty good figure for our first attempt.