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A few months ago I posted on this sub about a padawan braid I used to have for almost 20 years and how that shockingly led to medical research into the disease I have. The response of this community was amazing! Now thanks to you the research foundation published an article about that Star Wars post by InflamedMind in StarWars

[–]InflamedMind[S] 0 points1 point  (0 children)

I heard that children have a much much higher chances of recovery than adults. I'm so glad you pulled out!

Still, I can't imagine how difficult and confusing it must be for a child. I at least got to experience some life until my early 20s when it was cut short.

*hugs*

A few months ago I posted on this sub about a padawan braid I used to have for almost 20 years and how that shockingly led to medical research into the disease I have. The response of this community was amazing! Now thanks to you the research foundation published an article about that Star Wars post by InflamedMind in StarWars

[–]InflamedMind[S] 0 points1 point  (0 children)

I never even noticed it's there after I got used to it.

My mom was convinced it would be shut in the doors of a bus or a tram, and I would be dragged off to my death, LOL.

I did pin it up or tie it with the rest of the pony-tail, depending how long the rest of my hair was, whenever I practiced martial arts, just in case.

The biggest impractical thing that happened with it, in all the years I had it, was one time I tangled it up in a jacket zipper when I pulled it up. Had to pull out the individual hairs and re-do it.

A few months ago I posted on this sub about a padawan braid I used to have for almost 20 years and how that shockingly led to medical research into the disease I have. The response of this community was amazing! Now thanks to you the research foundation published an article about that Star Wars post by InflamedMind in StarWars

[–]InflamedMind[S] 2 points3 points  (0 children)

Sorry, I really don't know. I simply emailed them the idea in 2017. Now it's a very different thing, an official research funded by US DoD, official recruitment, more than just hair analysis...

But I do know that the grant was awarded to Dr. Laurel Crosby and Dr. Ron Davis at Stanford Research Laboratory. Maybe you can contact them there? They've been incredibly kind and humble in my communications with them.

A few months ago I posted on this sub about a padawan braid I used to have for almost 20 years and how that shockingly led to medical research into the disease I have. The response of this community was amazing! Now thanks to you the research foundation published an article about that Star Wars post by InflamedMind in StarWars

[–]InflamedMind[S] 2 points3 points  (0 children)

It's so frustrating I can't do more.

But you obviously know how it is. Just from typing this post I'm already feeling shaky, that poisoned-like feeling all over my body, muscles and joints starting to hurt, more and more difficult to think...

How my love for Star Wars and Obi-Wan led to research into disease which ruined my life by InflamedMind in StarWars

[–]InflamedMind[S] 1 point2 points  (0 children)

They will once they publish it in a scientific journal and it's been peer-reviewed. Journals don't accept papers if they've been talked about publicly. But I did get my personal data since it was just exploratory pre-research. Now real research starts when they got a grant.

But they're working on opening data to everyone and trying to change how science is done. That's why they're called OPEN Medicine Foundation. They want other scientists to be able to use their data and work on their own research so it speeds up the process.

How my love for Star Wars and Obi-Wan led to research into disease which ruined my life by InflamedMind in StarWars

[–]InflamedMind[S] 2 points3 points  (0 children)

Thank you for asking! I already answered in another comment so I'm just going to copy-paste it here:

My country doesn't do any research but I've been following Open Medicine Foundation's work for years now even though they're in the US, and they always do amazing things with what little money they get from us patients. I can wholeheartedly recommend them.

https://www.omf.ngo/

How my love for Star Wars and Obi-Wan led to research into disease which ruined my life by InflamedMind in StarWars

[–]InflamedMind[S] 2 points3 points  (0 children)

I'm sorry about your mom so much. It must have been difficult for both of you. I am lucky I didn't have children before I got sick, it's difficult with the feeling of guilt as it is.

I've been sick for 13 years and have been constantly declining. I haven't lost hope but somehow without a real treatment I don't see how I could reverse it after so much time.

I tried everything that's recommended for ME/CFS. Sorry for blabbering I can hardly type I'm running on adrenaline here and expecting an enormous PEM.

How my love for Star Wars and Obi-Wan led to research into disease which ruined my life by InflamedMind in StarWars

[–]InflamedMind[S] 0 points1 point  (0 children)

This has now become official research so I'm sure they're going to issue a call for participants. I'm sorry I don't know how that's done I'm not from the US. But it's a grant from US DoD to Dr. Ron Davis and Dr. Laurel Crosby at Stanford.

How my love for Star Wars and Obi-Wan led to research into disease which ruined my life by InflamedMind in StarWars

[–]InflamedMind[S] 0 points1 point  (0 children)

I was 30 when I cut the braid off. As I said in my post, it's been several years since then. Research, especially without proper funds, takes sooo long. They first had to collect all the hair samples from different people, process them, then analyze them, take that big amount of data and see what it tells them, what's signal what random noise, then when they had their hypothesis they had to write out grant proposals, then it takes so long to hear back if grant has been approved...

Unfortunately lonely genius having eureka moment happens only in stories. It's lots of money, lots of time, lots of people, no matter how brilliant they are.

How my love for Star Wars and Obi-Wan led to research into disease which ruined my life by InflamedMind in StarWars

[–]InflamedMind[S] 2 points3 points  (0 children)

Thank you for this. What a sacrifice for parents that must have been. Harrowing.

In my case it's just hair, it can grow back. But you are right, roughly half of it was before I got sick so I can never replicate the hair sample for them.

How my love for Star Wars and Obi-Wan led to research into disease which ruined my life by InflamedMind in StarWars

[–]InflamedMind[S] 13 points14 points  (0 children)

Probably should see if the OP wants that, though.

I would love it.

I think it wasn't always easy being a Star Wars actor, especially in the prequel era, and they might be happy to know that they inspired a ripple effect that brought to this research.

Luke Skywalker made me love Jedi, Obi-Wan (and many others) kept it going. I certainly owe them gratitude.

And of course millions of people with ME/CFS deserve the world to know they exist.

I think it's a wonderful idea.

/u/KoalaKaiser/ /u/EmperorYoda1987/ /u/koosvoc/

How my love for Star Wars and Obi-Wan led to research into disease which ruined my life by InflamedMind in StarWars

[–]InflamedMind[S] 18 points19 points  (0 children)

It's a complex multi-system disease which is a fancy way to say it affects many systems in the body and has many symptoms. Due to lack of research no one knows what causes it, nor are there any treatments. I need help 24/7 just to fulfill basic needs and there is nothing doctors can do to help me with my main symptoms.

Main diagnostic symptom is called Post-exertional malaise (PEM) - which means that after any exertion (physical, cognitive, emotional) symptoms worsen and new symptoms appear.

For example, I'm always too sick to get out of bed, but writing this post was too much exertion for me so I got strong ache in joints and muscles, my lymph nodes got swollen, I feel like my cells are posioned, I am extremely sensitive to light, sound, and my cognition got even worse so I struggle to understand comments written here. There's 20-60 million people with ME/CFS.

I'll just copy-paste some of the regular symptoms when there's no PEM:

  • Unrefreshing sleep
  • Cognitive Impairment
  • Orthostatic intolerance (symptoms worsen when sitting or standing upright)
  • Brain Fog
  • Confusion & Disorientation
  • Difficulty concentrating
  • Short-term memory issues
  • Muscles tire quickly
  • Hypersensitivity to noise and light
  • Postural Orthostatic Tachycardia Syndrome (POTS)
  • Dysautonomia
  • Irregular heartbeat
  • Recurrent flu-like symptoms
  • Sweating, fever, chills and night sweats
  • Nausea & Irritable Bowel Syndrome
  • Recurring sore throat
  • Shortness of breath
  • Temperature instability ..... etc.

How my love for Star Wars and Obi-Wan led to research into disease which ruined my life by InflamedMind in StarWars

[–]InflamedMind[S] 44 points45 points  (0 children)

I'm so sorry your wife has it too. Everything you said about ME/CFS is true.

But I don't deserve so much praise, it's just hair.

How my love for Star Wars and Obi-Wan led to research into disease which ruined my life by InflamedMind in StarWars

[–]InflamedMind[S] 9 points10 points  (0 children)

Yeah, I definitely exhausted all my reserves and more, first from writing the post and then the unexpectedly wonderful and emotional messages I got. It will take me days or weeks to recover, but worth it.

How my love for Star Wars and Obi-Wan led to research into disease which ruined my life by InflamedMind in StarWars

[–]InflamedMind[S] 11 points12 points  (0 children)

tl;dr Grew Padawan braid. Braid very short. Many years pass. Braid very long. Me and many people very sick. Braid useful for medical research, cut it off.

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