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Ryan Prior calls for your social media help re MedX on Friday 5 September

Sasha

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UK
Ryan says:

https://www.facebook.com/CFSDocumentary?fref=photo

The Stanford Medicine X Conference begins this Friday, September 5th. Forgotten Plague co-director Ryan Prior will be speaking at the event. MedX is one of the best chances of the year to for ME/CFS social media advocacy. Here's why:

"Social media coverage of our conference at Stanford created over 100,000,000 impressions and reached over 5,500,000. Last year, we trended number one on Twitter on our opening day."

If you're using Twitter, please consider tweeting about ME, CFS, ME/CFS, or neuro-immune diseases using the hashtag #medx. Engage with the overall social media conversation around the event. It's perhaps the best opportunity in the world for patient-driven health advocacy! Let's make sure we're a part of it!​
 

WillowJ

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We should maybe talk about his specific presentation, to avoid spamming the hashtag?

Does he have a preview available, for those who might take a little longer to watch and come up with something related to say?
 

Sasha

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I've got no clue about social media myself, @WillowJ, I'm afraid! Can't offer an opinion on that one.

I'm not aware that he's got a preview - here's all the info I've seen about him at MedX:

https://www.facebook.com/CFSDocumentary/posts/802286093135581

Forgotten Plague Executive Producer's new blog post on Stanford Medicine X's Global Access Program. He is attending and speaking about the film in a 90-minute talk called "Health Advocacy in the YouTube Age." You can watch this year's most exciting medical tech conference live on your computer. And let's get ME/CFS patients in the conversation talking and tweeting with the world's best minds in health!

According to the post:
"Silicon Valley is a different place, a fresher place, a more creative place. Silicon Valley uses technology in a democratic way that Washington has forgotten. We’re all welcome. It’s a brand new world. We might not be capable of marching on the Mall, but we sure can tweet. So come West with me to a land of collaboration, teamwork, and inspiration. ME/CFS is already alive and well at Stanford. Now, as the premier minds in health descend on Silicon Valley this September, let’s make ME/CFS the newest and brightest blip on their radar screens."

http://mecfsdocumentary.com/2014/08/08/joint-the-stanford-medicine-x-global-access-program/

Sorry not to be of more help - I'm still in the Stone Age, social-media-wise! :whistle:
 

WillowJ

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ok, I followed the links and here is Ryan's more detailed instructions, which makes sense:

I think it is vitally important to move ME/CFS into the mainstream of medicine and MedX is the best place to be a part of this innovative, world-changing conversation.

The conference lives and breathes on Twitter and social media, which is the type of advocacy the ME/CFS patient community excels in most.

You can watch all the main stage presentations streaming live on your computer and you can tweet about the dialogue as it unfolds.


I want to challenge each and every ME/CFS patient to join this conversation September 5-7th. Watch each presentation carefully, learn as much as you can, and tweet as much as you can. LET OUR VOICES BE HEARD!

This is the chance for a major coming-out party for our patient population. We already know that Stanford has become one of the premier institutions in the world for researching and treating ME/CFS.

Let’s build on that momentum and build bridges with many of the world’s leading minds in health innovation.

Conversation and dialogue are a two-way street. If you engage with the speakers, they’ll engage with all of us. And the rising tide will lift all boats.
http://mecfsdocumentary.com/2014/08/08/joint-the-stanford-medicine-x-global-access-program/

(I added more line breaks and bolded one part)
 
Last edited:

Little Bluestem

All Good Things Must Come to an End
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4,930
I want to challenge each and every ME/CFS patient to join this conversation September 5-7th. Watch each presentation carefully, learn as much as you can, and tweet as much as you can. LET OUR VOICES BE HEARD!
I am another social media stone-ager. I looks to me like he would like those of us on social media to watch all of the presentation and tweet about them. I assume to especially to tweet on what might be relevant to ME/CFS.

Are there enough people here to spam a hashtag if we wanted to?
 

Kati

Patient in training
Messages
5,497
Here is a MedX pearl captured from Twitter:

http://medicinex.stanford.edu/conf/conference/event/181


The social impact of patients participating in healthcare conferences

Background
Healthcare conferences more and more often have active discussions taking place on various social media platforms, most notably on Twitter via the use of the event’s formal hashtag. These conversations include directly sharing what’s taking place at the event, quoting important points made by presenters, discussing the conference topics with other parties, and more. We studied how those conferences that have more patient participation in these Twitter discussions ultimately impacted the size and reach of the conversation on Twitter compared to those conferences with less patient participation.
Method
At the Healthcare Hashtag Project, we have archived all tweets from 1,086 healthcare conferences that took place in 2013 from around the world. Of these conferences we selected those that had a minimum of 1,000 tweets using the conference hashtag during the days the conference was in session including two days prior and after the conference. A random sampling of 100 healthcare conferences was selected in order to scale down the data set. The tweet content from the final 100 conferences were analyzed to create a list of the top 100 influencers by mentions from each conference. These 10,000 participants were then categorized and identified as either a patient or non-patient. Our sole data source for categorizing was each participant’s Twitter profile description. Anyone that self-identified themselves as a patient was categorized as a patient. From this we separated the 100 conferences into two segments - those with more patients and those with less patients. Lastly, we analyzed the performance of each group on a variety of engagement metrics as a way of comparing the overall impact of the Twitter conversation between the two groups.
Results
A total of 1,159,093 tweets were collected and analyzed for this study spanning 1,086 healthcare conferences. Of these, 382,468 tweets were considered to create the top 100 influencers by mentions for the final 100 randomly selected conferences.
We've identified 198 unique patients among the top influencers that participated in these conferences. Those 198 patients were scattered among 65 conferences. Since some patients attended multiple conferences the 198 patients created a total of 279 appearances out of 10,000 possible in the top 100 influencer rankings. 35 conferences did not have a single patient among its top 100 influencers by mentions, while the median was 1 patient per conference. Conferences with more patients outperformed conferences with less patients on social impact metrics. Conferences with more patients had an average of 4,983 tweets during the conference, compared to 2,761 tweets for conferences with less patients. Average number of participants were 869 for conferences with more patients, compared to 500 for conferences with less patients. A Welch two sample T-test was performed to test the two groups, and they were found to be statistically different at P-value 0.05. A multiple regression analysis was conducted in order to test the predictive power of our hypothesis that more patient participation results in greater social performance metrics for the conferences. The hypothesis was found to be true and statistically significant with an F-test P-value of 0.0004. And while the model's predictive power was positive, it was low with an Adjusted R-squared of 0.1494.
Conclusion
Healthcare conference participants use of social media, and Twitter in particular, have grown to become a significant part of the conference experience with 1,159,093 tweets for 2013. We have observed a recent strong trend to promote patient inclusive conferences. Our analysis concluded that 65 out of 100 conferences were found to have one or more patients in its top 100 influencers by mentions. While we believe this is a positive development, this study also highlights the lack of patient inclusion with 35% of conferences having no patients and the median number of patients for all conferences studied being only 1. Conferences wanting to increase their reach and impact should find every reason to encourage and facilitate patient participation. Conferences with patients were found to have a stronger signal with higher than average number of tweets, larger reach with higher a average number of participants and more dynamic conversations with higher average tweets per participant.
 

Sasha

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BTW, California is 8 hours behind the UK. Their 9 am is our 5 pm. I don't know what time the conference starts or what time Ryan is on - does anyone?
 

catly

Senior Member
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outside of NYC
I signed up for the conference. The sign up was free and easy, but I'm still not sure how to access the presentations. There are a ton of presentations over 3 days, some seem interesting, others not so much. I'll also be watching Twitter to see how this type of interactive conference goes. Hopefully, I'll get a few tweets in.

Overall I hope this will be a learning experience for me as I think social media has a lot of potential for MECFS advocacy. It just seems to fit in nicely with making your voice heard while lying on ones couch!

BTW
Ryan's presentation is on Sunday from 1:30-3:00 west cost time.

This is an overview from the conference program:


"1:30 - 3:00 pmSunday, September 7
LK 305
Workshop: Health advocacy in the YouTube age
wide_2714.jpg

Ryan Prior
ePatient Scholar; Executive Producer, The Blue Ribbon
We live in an increasingly video-centric age, one in which a single video can get shared millions of times and make major impact, moving heartstrings and changing policy. Well-produced videos can only... Read more
Description
We live in an increasingly video-centric age, one in which a single video can get shared millions of times and make major impact, moving heartstrings and changing policy. Well-produced videos can only increase the likelihood of virality, and consequently, impact. Health advocates, independent bloggers, non-profits, and even large companies can all increasingly benefit from the principles of DIY filmmaking in promoting a message or a product. Opportunities might include lobbying on Capitol Hill, video appeals for crowdfunding stories, or heartwarming stories of how a message, product, or therapy has transformed the lives of a suffering family. Learning how to translate events into viral videos is an important skill in the 21st century.

Contrary to what one might think, however, producing strong professional-quality video does not need to cost thousands of dollars or require graduating from film school.

Former USA Today writer turned documentary filmmaker Ryan Prior will discuss his role as co-director and executive producer of the film The Blue Ribbon: ME/CFS and the Future of Medicine, a year-long production that utilized DIY principles (perhaps a film version of the "lean startup") to produce the film for 3-5 times less than a conventional documentary.

Prior will explain how he has helped other advocates in the ME/CFS and neuro-immune disease field to magnify their messages through quality videos produced at low cost. He'll explain how to get camera operators and sound engineers from hit network television shows to apply for your gig within hours. The session will be very useful for someone who has nothing more than a video-phone, a laptop, and a YouTube account. It can also scale up to explain how to produce documentary shorts or feature films for distribution on Amazon, iTunes, or Hulu.

Ryan Prior is a journalist and non-profit director interested in the intersection of complex disease, molecular medicine, and bio-informatics. He wants to tell the story of how new technologies are helping to solve old, intractable problems and to develop programs to equip doctors and society to address these issues.

Ryan's specific interest is in severe neuro-immune conditions like chronic fatigue syndrome/myalgic encephalomyelitis, as he contracted the disease in 2006."
 

Sasha

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I signed up for the conference. The sign up was free and easy, but I'm still not sure how to access the presentations.

That confused me but I then saw that, now that we've registered, we'll get an email notification when it starts (presumably with a link to follow).

There are a ton of presentations over 3 days, some seem interesting, others not so much. I'll also be watching Twitter to see how this type of interactive conference goes. Hopefully, I'll get a few tweets in.

:thumbsup:

Ryan's presentation is on Sunday from 1:30-3:00 west cost time.

Oh! I had thought he was doing that today. Thanks!
 

Sasha

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I registered this morning and got a confirmation email and I've tried the link multiple times but all I get is a some horrible music and a red cape flapping in the wind.

What, this link?:

http://medicinex.stanford.edu/

Oh! Yes, I'm getting the flapping red cape now. There were people talking at the conference earlier! Maybe they'll be back...
 

catly

Senior Member
Messages
284
Location
outside of NYC
The red cape is when they are on coffee breaks.

I guess my timing was really off then today, I must have tried to get into the online conference at least 20 times throughout the day and only was successful getting in for the last 1/2 hour. Hope I have more luck tomorrow!
 

Kati

Patient in training
Messages
5,497
@catly , I think the online attendance overwhelmed the systems today. However with a twitter account you can engage with the crowd by using this link, in fact people are still posting right now. i haven't been able to watch using IPAD, it sounds like you need flash and the computer is not well located for me to watch all day so I stick to the chat room from #MEDX

http://www.tchat.io/rooms/medx
 

Kati

Patient in training
Messages
5,497
Here is someone's highlights of MedX day 1. Looking forward to tomorrow. It can get a bit overwhelming to watch, I mean I am not watching, just following the Twitter chatter. But it's such a perfect opportunity for us patients to speak up about our experiences as patients of a disease that is not well accepted in the health care system context.

http://drmikesevilla.com/blog/2014/9/5/most-compelling-stories-of-2014-medx-day-one
 

Gingergrrl

Senior Member
Messages
16,171
@Sasha, Is Ryan Prior an ME patient, a film-maker or both? I know there was another thread on this but I can't find it now! Also, is Twitter the only way to show support? I am not on Twitter or Facebook (and very behind the times with all of this stuff) but would love to show my support!

I agree with what he said about Silicon Valley and when I was up there for my two appts at OMI, we were near Stanford and passed the bldg for 23andMe and I felt like very important work was being done for ME/CFS and maybe Silicon Valley will be where they eventually discover the biomarker and cure. I felt very strongly that I needed to support it in any way possible but didn't know what else I could do?!!