Live stream success! Share your favorite moments!
Added 2024-07-09 16:08:18 +0000 UTC(Levi typing)
Hey everyone! The Live stream was a huge success! Kyle and Dianna really wanted to thank you guys for the questions you asked here on Patreon. They were very thoughtful and intelligent. Kyle was very thankful at how your questions helped guide the stream.
Thank you so much!
Next, we want to hear about what your favorite moments were! We're hoping to cut and share some of the Live stream's best moments, or most educational moments, for everyone to see. What were the moments you guys enjoyed the most? What moments were helpful at understanding Dianna's situation? Were there any eye-opening moments?
Let us know in the comments. And again, we can't thank you enough! We raised over $120,000 dollars for the Open Medicine foundation, we couldn't be more thrilled.
LINK to the Live stream - https://www.youtube.com/watch?v=v8HWt9g4L0k
Comments
As a Kiwi (New Zealander) - yes, Envy Apples are amazing. We also love Ambrosia (which is originally a Canadian variety), and a sun ripened organic Royal Gala can be fab as well (the commercial ones can be too crisp / watery / flavourless). I see they have a few new varieties coming out - and Posy looks interesting, so I hope to try that next year. Fave moments - I really enjoyed all of the interviews, they were very interesting, very informative, and a great call to action. I was very engaged in them intellectually. I think though, the most - I can't even find the word - the moments that made me stop, and have that "oh, craaaaap" moment, were those that gave me insight into the reality of "living" with ME/CFS. I wish I had made notes, but I think the one that made me cry, was when you (Kyle) described the decision making process of whether or not you could share a joke, or something funny that had happened in your life, and how you couldn't even have that level of connection with each other sometimes. The expert interviews gave me information, and a view from the outside looking in, your personal stories shared with us gave me the merest glimpse of what it is like on the inside.
Gillian Green
2024-08-09 02:06:39 +0000 UTCI have severe ME + long covid, so I’m watching the whole thing slowly in little chunks (it’s so nice). So far, a couple clips I would love to see and would be genuinely helpful in real time for me: 1. A compilation of the moments talking about caregiving (and including when Kyle adds the note about making sure he doesn’t pass it off as easier than it is/was). My partner (wife, tomorrow!) is my caregiver and we’ve been almost unable to find any decent resources for her cos almost all the caregiving stuff is focused on dementia and it’s just such different concerns and points in life. It would’ve really helped her starting out to see something like that, and still would help. 2. The clip where Simone talks about being friends with someone dealing with this (it’s somewhere around the six hour mark, the bulk of it), and/or a compilation of any moments that talk about friendship and supporting as a friend. I would send that to my friends right now if it was clip-ified, cos I know they care about me but a lot of them are doing a bad job showing up, and partly I think it’s not seeing how bad it is and partly probably just not knowing what to do or having ideas, so I think a clip like that would be a great resource for young sickies like me who don’t have energy to teach our friends how to do better one-on-one. Thank you so much for doing this livestream, it’s meant so much to me and I’m so thankful for yalls advocacy and visibility work. Thank you.
Dot
2024-07-23 00:41:58 +0000 UTCI am SO proud. I can't believe how much money was raised. Thank you all for everything you've done <3 it was an amazing livestream!!
Rose V
2024-07-22 23:25:57 +0000 UTC120k is amazing! Great job to all of you!
TripBee
2024-07-22 19:04:00 +0000 UTCget well soon
weirdly hypnotised
2024-07-20 20:26:24 +0000 UTC🤗🥰(HUG)❤️❤️
POPPA GRIM
2024-07-19 11:59:54 +0000 UTCThis! And when she reached for the tissues but couldn't quite reach, he noticed right away and jumped up to get them for her. There were so many touching little moments of care and love between them.
Aldona Dye
2024-07-11 21:22:54 +0000 UTCI also have ME/CFS and I found it impactful that the majority of Dianna's day was shown on the livestream. The fact that not only is she bedbound but she can't handle much sensory stimulation, reading, watching and listening to media, or sitting up. Some of the moments that I thought were impactful to me personally were: * Stockdale paradox. * Putrino - Pacing is sacrifice * Putrino - Physical Therapy is counterproductive for ME patients that are unable to complete their activities of daily living (ADLs) * ME/CFS is NOT deconditioning * Kaufman - ME/CFS can be as devastating as cancer. * It important to rest with Long COVID as not doing so can cause severe ME. * Simone - the onion support advice I have the condition and am well researched though. Some basic information would likely be very helpful to the general viewer.
A. R.
2024-07-11 19:45:55 +0000 UTCI'm still watching it. 8 hrs done
Vipul Kapoor
2024-07-11 03:10:53 +0000 UTCThe interview with Dr. Kaufman gave me a lot of knowledge. The hug had me crying. Simone's handing it off to Ian had me laughing. That red light was BRIGHT. And Dianna's wave goodbye. (I waved back.)
Charles Aukai
2024-07-11 02:52:15 +0000 UTCI couldn't watch it live but I've since watched EVERY MINUTE of the 11 hours. The stream was an eye opener for me. Thank you.
Eric Davis
2024-07-10 21:45:47 +0000 UTCLoved the mix of candid conversation and educational info. Congrats on making this horrible situation of yours something of value for the world.
Sue L’Hommedieu
2024-07-10 17:46:19 +0000 UTCMake a clip of the part where you explained what a crash is. People need to understand this.
Michael E Bull
2024-07-10 17:44:57 +0000 UTCThe interview with Dr. Putrino
KR
2024-07-10 16:02:32 +0000 UTC1. Kauffman's interview. 2. After 3:45:00 when Kyle shares the latest research on covid and long covid like nasal vaccines. 3. Last 10 mins of Linda's interview
Vipul Kapoor
2024-07-10 05:59:00 +0000 UTCDr. Putrino and Dr. Kaufman were perfect educators on this issue (I would like to see those interviews on the channel) and Kyle sets the gold standard for care. Oh, and Dianna looks crazy cute with her hair shaved??? I hope it brings her relief. Stay steadfast, bless you both. 🙏
Resmiranda Rigor-Mortis
2024-07-10 04:29:38 +0000 UTCIncredible, congrats!
cmldad
2024-07-10 01:42:28 +0000 UTCI especially enjoyed Simone and Kyle sharing some laughs and light hearted moments. This was so hard to do and they really pulled it off!
Kit Lammers
2024-07-10 01:30:33 +0000 UTCThe love in her eyes in the photo is wonderful to behold.
JrrCharlotte
2024-07-10 00:20:10 +0000 UTCI came in and out of the Live-Stream all day long but I found it very informative. My biggest take away is the understanding that people who have these issues, until there is a solution, their life is about conservation of energy. Dianna has a limited amount of energy to use each day and that is the day to day battle. Where to focus that energy. Seeing the updates with her lying in bed makes so much more sense now. When Dianna cut her hair, that made me sad. At the time it seemed like a step backward. But after the Live-Stream I understand it was choosing priorities with the limited energy available and where to use it best. Thinking of all the energy I use thru-out the day and then saying I can only use a fraction of that. That requires some serious soul searching to decide what is important. Watching both you and Kyle, I feel like you are doing a great job with that day to day struggle. Hopefully with the help of this Live-Stream and all the donations, science can figure out a solution for the long term battle and a return to a normal life :)
Robert Evans
2024-07-09 22:10:43 +0000 UTCDang, missed it. Really glad you've pulled through!
Johnathan M.
2024-07-09 21:24:00 +0000 UTCTears of joy when Kyle broke the news to Dianna that the first goal had been achieved in about 35 minutes, yep. Makes my eyes ... just thinking about it. Cheers and prayers from Indiana.
FnLn Steve Indiana
2024-07-09 21:09:40 +0000 UTCCaregivers are doing an exceptional job. All the small things really add up when you're providing round the clock care. Watched my grandpa do it with grandma with scoliosis and host of health problems in 60's-70's. Was changing out her oxygen cylinders @10. Great content from everyone educating viewers on history of little known disease. Autoimmune are so challenging to treat. See if first hand with Lupus and Epilepsy with adult child who is med scientist. Thanks for all you're doing.
CTOCSE8
2024-07-09 20:52:38 +0000 UTCIf I'm really being honest, my favorite part was Ian coming onto the stream with the energy of a bull in a China shop, cursing up a storm. Dude has the biggest heart in the world while also being a walking 9/11 joke. But as much as I enjoyed that from a comedy standpoint, what it really did is highlight just how exhaustingly *boring* things must be for Dianna mentally right now. Such a chaotic disruption like that helped put me at ease... She doesn't really get to do that. We can turn off the stream. We can fast-forward through the "slow parts" to get to the interviews and revel the chaos. She's just sorta... stuck there. Breaks my heart.
EnthusiasticOwl
2024-07-09 20:25:34 +0000 UTCI was touched by how expressive Dianna is and how attentive Kyle is to her every need. I was deeply touched by the short but beautiful moments when Simone went in to see Dianna. What an incredible and vulnerable livestream event. Hats off to Levi who I can see from Patreon plays a big role in Diana and Kyle’s care also. If you have another Q and A I’m wondering how Dianna is feeling on a day like this. Is she in a lot of physical pain, or having brain fog? I hope there are some good days, and many more to come. Sending much love and care from Florida.
Dee
2024-07-09 19:18:24 +0000 UTCI really loved it when Kyle read Dianna's note on the tablet at the beginning of the livestream, it was lovely to hear that she still makes jokes, I think her sense of humour is our greatest hope ❤️💙
Mariana Arzuaga
2024-07-09 18:34:28 +0000 UTCFelt good to see her so active compared to past.
Dennis
2024-07-09 18:24:54 +0000 UTCit was so heartwarming to see Dianna and Kyle being overjoyed together about hitting the goal so fast ❤️ also the whole convo with Dr. Putrino really made me reevaluate my own strategies again and validated me in taking a step back from physio again, cus it made me realize im not ready. i think this stream will do wonders in helping people process their internalized shame and really listening to their bodies again. Plus Kyle is such a rolemodel of how to be a good caretaker and it brought me to tears to watch him with Dianna in the corner during the prerecorded Interview with Putrino. Much love to you all & i just hope you all know what great work you're doing still, despite the hardships you're facing. You're crucial links in the disability community now ❤️ this also goes out to Simone and Ian who were wonderful co-hosts. Much love and hope to all of you and big big thanks from the bottom of my heart.
Sasha
2024-07-09 17:58:34 +0000 UTCDr. Putrino explained what’s happening physiologically in the body with PEM so well. 💜
Centralperk
2024-07-09 17:57:02 +0000 UTCThe live really helped me understand the situation a lot more. I thought I understood rationally, but seeing a day in Dianna's life was really eye-opening. I loved the Q&A with Simone and Kyle. The first two interviews were amazing too : the first one to better understand the disease and how difficult it is for doctors to really help patients that are bedbound, and the second one to give us all hope for the future. Sending you all my support!
Dominique Charbonneau
2024-07-09 17:52:52 +0000 UTCI missed the live, but watching the recorded version. As a result I moved my Patreon membership up a level. I hope the few extra $ helps both of you in this battle.
Dean K
2024-07-09 17:40:07 +0000 UTCThe thumbnail captures my highlight. At breakfast, Kyle said something that made Dianna's eyes pop. Then she beamed, then she wept. It was really obvious what he told her, and I've watched this beautiful moment several times. https://www.youtube.com/live/v8HWt9g4L0k?si=pukaSjAZo_2Q0nOV&t=2614
john
2024-07-09 17:31:38 +0000 UTCTwo key moments: 1. The multi-disciplinary aspect to both the research (bench) and the patient care (bed), and the fact that it's this cross-pillar aspect which is contributing to the lack of specialists and the lack of effective patient diagnosis and treatment. Beyond the whole insurance problem, of course. I feel like CDC needs to create a task force designed by Dr. David Kaufman and his colleagues to pull the discipline-specific SMEs out of their respective silos and fund collaborative research and physician training programs. This is warranted, I think, because as people transition to (incorrectly) thinking about COVID infection like any other seasonal flu, the overwhelming odds that 10-30% of the population will even temporarily become disabled due to Long COVID and ME/CFS is a real, practical time bomb we economically cannot afford to continue ignoring. The welfare crisis this will create will become massive and deeply detrimental to our GDP. (You've got to talk about it in terms governments understand) 2. The other eye-opener for me was later in the livestream when you were talking with Dr. David Putrino about PEM and the strong correlation between highly-active, athletic people and PEM in post-acute COVID recovery situations. How not resting even after you're starting to feel better can cause serious problems. That needs to be communicated much more broadly.
Bob and Mandy
2024-07-09 17:06:30 +0000 UTCSome highlights 1. Simone hugging Diana, them crying together. 2. Kyle holding Diana’s hand while they lay together in silence.
Nathan Gonzalez
2024-07-09 16:49:35 +0000 UTC❤️💪 Congratulations 👏
Dale Allen Platt
2024-07-09 16:44:24 +0000 UTCI couldn't watch the stream but I'd love to watch a supercut of the best parts.
Mike Brown
2024-07-09 16:44:05 +0000 UTCThere is only one Dianna. Thank you for letting us help.
Dean White
2024-07-09 16:37:19 +0000 UTCThank you for making it happen! The whole team did a great job starting with Dianna who spent her precious energy on directing it and continuing the channel's goal of science education even in the dire times you all are in!
Sergey Chernyshev
2024-07-09 16:37:16 +0000 UTCI love the interview with the Dr. I'm planning on having my students watch this part of the stream for a class I teach about marginalized identities and healthcare.
Limberbutt McCubbins
2024-07-09 16:27:32 +0000 UTCPut the Qs and As from the viewers in the video. Loved the stream!
Kim
2024-07-09 16:23:06 +0000 UTCWhat an incredible stream, I'd love to see more regular shorter streams and more interviews with doctors and other researchers on the physics girl channel. Although I understand this may not be possible currently. Main focus should be on Kyle and Dianna and their lives right now obviously, but I'd still love to see something like that possibly in the distant future.
ezez
2024-07-09 16:20:13 +0000 UTC🥳🥳🥳 Well done all who made it a success! 👏👏👏
Mary Pittman
2024-07-09 16:20:07 +0000 UTC🥳❤️👍🏿
TwinSteel
2024-07-09 16:16:43 +0000 UTC
