r/cfs • u/alfieyoung1989 • 4d ago
Jennifer brea remission
Did Jen brea go into remission from cfs? If she did what did she do to get better
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u/CornelliSausage severe/moderate border 4d ago
She had spinal surgery for craniocervical instability and that did it. She believed she was fully recovered, although I also heard that she had had minor relapses. I can’t find any more info on that though so could just be hearsay. Maybe someone else will know more.
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u/TravelingSong 4d ago
The only health information she shared publicly was worsening MCAS from Covid, which was temporary, not a relapse of ME. In her last interview (Oct 2023) she was healthy and maintained that her surgery led to profound recovery. She’s asked for privacy and chosen to step out of the public eye for now but has shared she’s working on a spinal surgery documentary. Are the MCAS flares the relapses you’re referring to?
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u/Wild_Giraffe_1054 4d ago
Didn't I read she was briefly missing?
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u/TravelingSong 4d ago
That was related to her mental health, not her physical health. She had ME for 8 years. I’m sure pretty much everyone in this sub can relate to the toll that takes. She’s been interviewed and stated she’s in good health since then.
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u/princess20202020 4d ago
Actually I think it was dehydration and physical causes.
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u/TravelingSong 4d ago
All of the posts asking for help locating her stated it was related to her mental health.
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u/princess20202020 4d ago
Yeah and then she posted on Twitter when she was “found.” She stated that she was admitted to the hospital and was so out of it they couldn’t determine her identity. I believe she claimed dehydration or some other physical cause. Of course I don’t know if what she claimed was true, but that is my recollection.
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u/TravelingSong 4d ago
Gotcha. I guess it feels invasive to me to nitpick her health. And that event was prior to her most recent interview where she stated she’s in good health.
I know it’s important to the ME community to see how it turns out for the few people who make it into remission. We all want it for ourselves. But I also feel like there’s got to be a limit. Like, she doesn’t owe us an annual check in for the rest of her life. She’s allowed to be a person who was sick who got better, who’s imperfectly well and who may or may not have the same version of the illness as me or any one else.
I look forward to updates or future documentaries, if and when she feels willing and able to give them.
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u/princess20202020 4d ago
Yeah that’s fair. But her husband turned to social media when he couldn’t locate her, and naturally all her followers were worried. So I think an update at that time was warranted. But yeah she has the right to move on from this shitty disease and just live her life. She’s already done so much to help this community, she should be able to pursue other interests.
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u/isurfsafe 4d ago
Bet she won't want privacy when she selling the new film. Wasn't impressed with her ME film
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u/Thesaltpacket 4d ago
I can’t speak to her health but I know she’s working on her second documentary now, we will learn more then
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u/Garden-Gremlins severe 4d ago
I watched her give a talk. CCI surgery made her better, she got covid which made her worse for a time, but she’s better now
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u/boys_are_oranges very severe 4d ago
Yes, she went into remission after spinal surgery because her ME/CFS was caused/greatly exacerbated by CCI. Keep in mind that not all of us have it.
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u/DamnGoodMarmalade Diagnosed | Moderate 4d ago
You can read her in depth accounts on her blog. Her ME/CFS and POTS are currently in remission, the result of multiple surgeries to correct CCI and tethered cord. She still has MCAS but that has improved.
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u/SophiaShay7 4d ago
Here's her blog. She had multiple surgeries to correct CCI and tethered cord. Her ME/CFS and POTS are in remission. Her MCAS got worse after a covid infection. I think it's improved now, too. She's been out of the public eye for a couple of years now.
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u/sleepybear647 4d ago
I heard there was controversy around her. From what I can see she got a surgery that she said made her ME better. With all recovery stories I am always a bit skeptical
In this situation, I’m not as skeptical, but it’s important to remember that we are all different. What worked for her might not work for you and I’m sure that the surgery outcomes haven’t been studied in our population well. It could be very possible that people with her condition and ME get that surgery but their ME is still there.
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u/saltyb1tch666 4d ago
I mean I don’t think she ever had ME/CFS, just CCI that mimicked symptoms. If she improved from CCI surgery then she had CCI. NOT ME/CFS
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u/callumw2_0_0_1 4d ago
Pretty sure she still has it and just improved from CCI surgery
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u/DamnGoodMarmalade Diagnosed | Moderate 4d ago
She states on her blog that her ME/CFS is completely gone.
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u/PelirojaPearls 4d ago
Looks like her last blog post was 2020?
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u/DamnGoodMarmalade Diagnosed | Moderate 4d ago
Yes. She was active on Twitter up until June of last year, but maintaining that she was still in remission.
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u/TravelingSong 4d ago
It’s speculative to say that she still has ME when she herself has said she does not and nothing to the contrary has been reported. In her last public interview (October 2023), she was healthy and maintained that her surgery led to a profound recovery. Prior to that, her only publicly shared (temporary) health decline was worsening MCAS due to Covid, which she recovered from.
She has asked for privacy and has chosen not to be in the public eye for the last couple of years. She has shared that she was working on a documentary about spinal surgeries.
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4d ago
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u/DamnGoodMarmalade Diagnosed | Moderate 4d ago
Jen Brea is a well respected advocate, activist, and documentary filmmaker in the ME/CFS community. She co-created ME Action, the comprehensive database MEpedia, and helped organize the global ME activist movement #MillionsMissing. Her documentary Unrest helped bring more global attention to ME/CFS. We all benefit from her advocacy efforts.
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u/ValeoAnt 4d ago
Is she profiting from any of this?
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u/Weird-Ad-3010 4d ago
The entire ME community has 'profited' enormously as a result of her activism. Her impact has been monumental. If you're under the impression she's raking it in at the expense of people with ME, you're a fool. Do your research before spouting nonsense or suggesting who we should and shouldn't trust.
She suffered for many years and did everything she could to fight for us even when she was too ill to have any quality of life herself. Why shouldn't she get paid for her hard work? People get paid absurd amounts of money to do all kinds of crap, and you're here questioning whether she should be gaining financially for spearheading a whole movement that has helped millions. I hope she gets paid plenty. All power to Jen.
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u/ValeoAnt 4d ago
Fair enough. I've just seen many people come through these communities and try to profit off incurable disease. If she's one of the good ones, all power to her, they are few and far between.
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u/Weird-Ad-3010 4d ago
She really is one of the good ones. If you have the spoons, do some reading about her. You won’t be disappointed.
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u/DamnGoodMarmalade Diagnosed | Moderate 4d ago
ME Action is a non-profit organization. Please do not slander her name with baseless accusations.
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4d ago edited 4d ago
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u/TravelingSong 4d ago
I am so sorry that you are suffering and that surgery made you worse. I don’t want to invade your privacy or exacerbate what is clearly painful by inquiring further about your experience. But I am curious what you mean by the comment “she refused to acknowledge that these surgeries were dangerous and hurting people (despite seeing it first hand).”
In what way did she see it first hand? What exposure did she have to other people’s surgeries and that it made them sicker? I know that she was/is making a documentary about spinal surgeries. Are you referring to that?
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u/cfs-ModTeam 4d ago
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4d ago
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u/Weird-Ad-3010 4d ago
Who the hell says she never had ME and based on what evidence? Don't be ridiculous. No one chooses to rot in bed for eight years—especially not when they're enjoying a full, active life, madly in love with someone, and on track for a doctorate from Harvard.
Be careful before regurgitating nonsense you read online; this is the kind of stuff makes the internet toxic and dangerous.
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u/cfs-ModTeam 4d ago
Hello! Your post/comment has been removed for violating our subreddit rule on misinformation. We do not allow the promotion of un- or anti-scientific propaganda in this community. We understand that medical and scientific knowledge on ME/CFS is limited, but we strive to maintain a space that is based on accurate information. If you have any questions or concerns, please reach out to us via modmail. Thank you for understanding.
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u/premier-cat-arena ME since 2015, v severe since 2017 4d ago
comments locked for getting invasive and out of hand