Dianna Cowern, Physics Girl, fundraiser 2024 and other news

I wish she or Kyle would read this forum. It’s sad I watched her 2024 fundraiser so hopeful, I think the keynote was from Dr. Kaufman lol. In that time my entire perspective has changed, this forum being a wake up call. We are sadly still the minority, I go to my local groups research committees and it’s all about SGBs, Magnetic Hats/red light devices, and vagus nerve snake oil. I try to expand their view, most hadn’t even heard of decodeME but the idea of a complex polygenic disease is really really hard to convey when you have instagram influencers and the “top researchers” all pushing scams. The idea of a GWAS is so foreign I might as well be talking another language at times. We need science communicators! Forever grateful for @ME/CFS Science Blog your summaries have been the best support for trying to get these complex ideas across locally.
 
While I don't share Kitzmiller's views on the relationship between doing random trials and speeding up fundamental research, Dianna's improvement seems miraculous to me and I wouldn't mind them lobbying and fundraising for proper trials for the treatments they believe helped her.
 
Felis Catus said:
While I don't share Kitzmiller's views on the relationship between doing random trials and speeding up fundamental research, Dianna's improvement seems miraculous to me and I wouldn't mind them lobbying and fundraising for proper trials for the treatments they believe helped her.
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She says she’s at “30 or 40%” of normal capacity in the interview. So moderate?. She probably crashed horribly from doing this interview. I listened to some of it and she speaks better, for longer and seemingly more easily than I could manage at my severe level. But I had SGB and it did nothing and if you review the SGB for ME group on Facebook for anecdotal reports they are almost universally negative, so I’m very skeptical.
 
Braganca said:
She says she’s at “30 or 40%” of normal capacity in the interview. So moderate?. She probably crashed horribly from doing this interview. I listened to some of it and she speaks better, for longer and seemingly more easily than I could manage at my severe level. But I had SGB and it did nothing and if you review the SGB for ME group on Facebook for anecdotal reports they are almost universally negative, so I’m very skeptical.
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Is it the forum's belief that one treatment is going to help everyone?
 
Braganca said:
She says she’s at “30 or 40%” of normal capacity in the interview. So moderate?. She probably crashed horribly from doing this interview. I listened to some of it and she speaks better, for longer and seemingly more easily than I could manage at my severe level. But I had SGB and it did nothing and if you review the SGB for ME group on Facebook for anecdotal reports they are almost universally negative, so I’m very skeptical.
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I don't think SGB is an effective treatment but I don't think we know all details about her treatments. I agree that it sounds like she's moderate now but I don't see why "She probably crashed horribly from doing this interview".
 
Felis Catus said:
I don't think SGB is an effective treatment but I don't think we know all details about her treatments. I agree that it sounds like she's moderate now but I don't see why "She probably crashed horribly from doing this interview".
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I’m just reacting to your saying that her improvement seems “miraculous”. Lots of people with MECFS have improvements, eve very severe. She is still very sick. It could be ebb and flow of disease or random improvement.

Quoted from transcript:
Evans: Dianna still crashes when she pushes herself too hard. She crashed after she made that first science video in three years. Her recovery is a roller coaster. So we asked her if our long interview might be too much.

Cowern: To be perfectly honest, like, this has been a long time of chatting for me, and it, I will probably crash from it, and, like, I think that's something that a lot of people don't see is, like, I'll appear on something, or I'll make a video, and they don't see the crash afterwards. But I think, you know, it's an opportunity to say, like, I will probably crash.’ But that's something that I'm willing to do because I want to live.
 
BrokenBeaktheBrave said:
I wouldn't read too much into my phrasing given I forgot the word "oven" this morning and had to describe it to my partner as "the box in the kitchen that cooks food".
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Best part of the word forgetting game is when you know damn well you only used that word a couple of hours ago, and that while it might be gone right now, it will be back later at some random moment later in the day, when you don't need it. :rolleyes:
 
Braganca said:
I’m just reacting to your saying that her improvement seems “miraculous”. Lots of people with MECFS have improvements, eve very severe. She is still very sick. It could be ebb and flow of disease or random improvement.
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Yes, I find it miraculous because while there are people who improve from severe or very severe, my feeling based on online groups is that there are a lot more people who don't improve, especially if they got ME/CFS as an adult. I'm aware we have members here who improved, and it's possible that she has a relapsing-remmiting pattern. I think there is a value in assessing cases like hers (if the patient wants it) and trying to see if there is a reason why they improved, e.g pharmacological or genetic. Just as I'm sceptical of various unproven treatments, I'm sceptical of ascribing any and every improvement to randomness.

Braganca said:
Quoted from transcript:
Evans: Dianna still crashes when she pushes herself too hard. She crashed after she made that first science video in three years. Her recovery is a roller coaster. So we asked her if our long interview might be too much.

Cowern: To be perfectly honest, like, this has been a long time of chatting for me, and it, I will probably crash from it, and, like, I think that's something that a lot of people don't see is, like, I'll appear on something, or I'll make a video, and they don't see the crash afterwards. But I think, you know, it's an opportunity to say, like, I will probably crash.’ But that's something that I'm willing to do because I want to live.
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Crashing and crashing horribly are not synonyms. They seemed to expect a crash.
 
Sean said:
Best part of the word forgetting game is when you know damn well you only used that word a couple of hours ago, and that while it might be gone right now, it will be back later at some random moment later in the day, when you don't need it. :rolleyes:
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Or when my partner is at work and there's no one here to try and guess what I'm trying to say. My google search history provides a solid record of my cognitive decline. A search from earlier this week - "singular sound chunks that makes up words". I had forgotten the word "syllable"

The October slide has been brutal for me this year.
 
It seems that there may be a subgroup of people who can actually go from mild to very severe and back again. I found this Reddit thread about it.

However, based on my impression from reading various forums as someone who has been bedbound for over two years, I would say that this seems to be relatively rare. The general consensus seems to be that the more severely affected someone is, the lower their chances of returning to a less severe level of illness.
 
I saw this article online today. It's dated Oct. 21:

"'Nobody knows what to do': How Long COVID left Physics Girl searching for answers"

www.kpbs.org

'Nobody knows what to do': How Long COVID left Physics Girl searching for answers

San Diego's Dianna Cowern, also known as Physics Girl, was one of the internet's most popular science communicators.  Long COVID left her bedbound and facing a medical mystery with life-and-death stakes.
www.kpbs.org www.kpbs.org

I think it has some overlap with the podcast that was posted earlier in this thread but I don't know how much (I'm not up to watching the full video)
 
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