Dianna Cowern, Physics Girl, fundraiser 2024 and other news

Jaybee00 said:
Yup but 3-4% increase in donations is good actually.
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Definitely. But if I recall correctly the turn around for the OMF was somewhere around roughly one publication is produced per 2 million in funding, of course the OMF also do far far more than just publish results but I do hope that this attention the stream is receiving can be used for more than just the one off funding boost, albeit that of course already being a huge and massive success.
 
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forestglip said:
The reach this is getting is very heartening. It's the top post on r/videos, which has 27M subscribers and is the 15th largest subreddit. Over 1,000 comments, with lots of people curious about what LC and ME/CFS are, asking for information and educational resources.

One person just commented that they just learned from this that they might have LC.
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...and post was removed from r/videos by the subreddit's moderators. No reason given as far as I can tell.

Edit: Back up! I messaged the moderators to ask about it, and they said: "troll reports - reapproved sorry!"
 
That's it for the stream. Near the end, Kyle said there's a possibility for another fundraiser in the future. He said he has other organizations and researchers in mind, and some researchers have reached out to them to say they'd be interested in doing an interview. Over $109,000 right now, but the link to donate will stay open for some time.
 
It's a brilliant idea for a fundraiser and Physics Girl's partner looks to be smart and very dedicated. Unfortunately though he was saying quite a bit of stuff that is speculative at best - it's autoimmune, blood was injected into mice and it made them have Long Covid - in the short bit I listened to. It's such a mess of misinformation out there, thousands more will have picked up ideas that don't have much evidence to support them, at least yet.
 
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RaisIng large sums and showing the reality of very severe ME and the unacceptability of abandoning these sufferers , as They did with ME, to hoping they will be “A lucky One” and just over time improve - Hugely helpful afaic. I only saW the putrino interview , which I hope become available with a transcript on its own as a resource and buffer for the severely affected. The severe are often under incessant pressure to rehabilitate and not “just lie there Doing nothing” “shutting themselves off from the world“ etc, & it was very supportive and affirming And about management on their level.
 
Dakota15 said:
@Laurie P - I missed the Kaufman interview. Can I ask why/what was disturbing from this?
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Yann04 said:
I only caught a few minutes reading captions but he glossed through a lot of stuff saying it was part of the mechanisms of ME a lot of which is unproven: MCAS, SIBO, Leaky Gut etc.
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In addition to MCAS, SIBO and Leaky Gut, he also talked about Inflammation, Autoimmunity, hEDS, CCI and POTS. Regarding POTS, what I thought I heard him say (I can't double check because it's not on YouTube now) is that all Long COVID patients (probably in reference to the patients that he has seen) have POTS. He wasn't interested in the ME/CFS label; for him that was just about ticking boxes. He rattled off some of those boxes but didn’t get them right. He is interested in these other conditions and how they all interact and that that is what needs to be treated for people to feel better. He thought POTS and SIBO were treatable and MCAS was complicated.

Edited to add a section from the transcript:
2:01:41 I've have every single long covid patient I've met regardless of whether they say they feel dizzy when they stand

2:01:47 they have autonomic dysfunction with pots poster static teoc cardia syndrome
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Dakota15 said:
@Laurie P - I missed the Kaufman interview. Can I ask why/what was disturbing from this?
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Copied from the YouTube transcript. I can't listen again to correct the transcript.
2:17:44 there's a a supplement a molecule called oxaloacetate company approached me and

2:17:49 said look we think this will help chronic fatigue and fatigue I say well I'll try anything as long as it won't hurt them and so I in fact went did a a

2:17:57 non-controlled nonbo you know the worst kind of science trial yeah of giving

2:18:02 oxaloacetate to my patients and lo and behold two-thirds of them had a decrease in their fatigue who W that's incredible

2:18:10 yeah so now there's a randomized trial ongoing with the same uh you know drug

2:18:15 or supplement um and you know that's real quick bench to Clinic which I love

2:18:24 um and then there's other Pharmaceuticals that have approached me
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Thread:
Oxaloacetate Treatment For Mental And Physical Fatigue In (ME/CFS) and Long-COVID fatigue patients, 2022, Cash and Kaufman https://www.s4me.info/threads/oxalo...fatigue-patients-2022-cash-and-kaufman.28316/
forestglip said:
FYI, in October 2023, the journal added this disclaimer to the top of the page:

Editors' Note: Readers are advised that concerns have been raised regarding the methodology and reporting of this clinical trial and an incomplete declaration of competing interests, which are currently being investigated by the Editor-in-Chief. Further editorial action will be taken as appropriate once the investigation into the concerns is complete and all parties have been given an opportunity to respond in full.
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Another thread:
Oxaloacetate
https://www.s4me.info/threads/oxaloacetate.22058/
 
Email from OMF:

"We are overflowing with gratitude and hope following the incredible live-streaming event hosted by Dianna Cowern (Physics Girl) and her outstanding team. Your engagement and generosity have shattered our expectations. What started as a goal to raise $10,000 turned into a mind-blowing $121,983 fundraiser and still growing!

A Phenomenal Team Effort
Dianna Cowern and her exceptional team, including Kyle, Ian, Simone, Levi, Vanessa, Derek, and the entire crew, delivered an incredibly powerful and insightful event. Their dedication to shining a light on ME/CFS and Long COVID is remarkable. Through their efforts, they've created a ripple effect of understanding and hope, bringing much-needed attention to these complex conditions.

A Landmark Event for Awareness
This livestream was not just about fundraising. It was a pivotal moment in raising awareness for ME/CFS and Long COVID. The event reached hundreds of thousands of viewers, many of whom may have been learning about these diseases for the first time. By bringing these often misunderstood and overlooked diseases into the spotlight, we've taken a significant step forward.

A Huge Thank You to Everyone Involved
To everyone who tuned in, shared, donated, and showed support – you are the heartbeat of this mission. Your commitment drives real change, not just in funding research, but in creating a more informed and empathetic society.

With heartfelt gratitude,
Team OMF
 
I can’t help but feel jealous watching Diana get better… Why her and not me? Is it the money and trying a bunch of random treatments? Is it not having to crash yourself fighting the system because you can afford doctors who understand? Is it just plain luck?
 
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