Film "unrest"

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Who has seen the film "unrest" about and by Jennifer Brea who has ME. It's won all kinds of awards. Everyone and loved ones need to see this documentary. You can find it on Netflix, PBS and I'm sure her website. It is so validating. It totally explains what we have brain inflammatory disease. Stanford University in October 2017 completed a powerful study on ME. The reason why this study was even done was because some of the doctor's involved have it in their own family's. Please watch this it gives us a voice. I want to know what you all think.

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  • Posted

    Loved it! Im so glad our illness is finally getting recognition. I wasnt as bad as Jennifer and was able to push thru life and have 2 daughters. I pray they dont get this. But i do think Jennifer Brea should attempt to have a child since she has plenty of help. I also would like to know all shes tried and what her current regimens are. I heard shes out if bed now, on a talk show interview .
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    • Posted

      Ah youre so lucky to live in L.A.. I miss San Diego weather. Had to move to Indiana when I became ill. Im assuming Jennifer is from east coast having gone to Harvard? I hope she opens a blog or website telling us more of her experiences and results. Tnx!
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    • Posted

      I lived in San Diego for many years and went to San Diego State University for 2 years. I believe Jen and Omar are now living in Glendale, CA. I think they moved because of mold issues where they were living on east coast. Jen's regimen (Valcyte, etc.) has helped her greatly. I did ask my doctor, Dr. Chia, about going on Valcyte. He told me there's only a minimal chance of it helping. Also, it has scary possible side-effects. I tried Naltrexone, which many have talked about. I had to stop taking it because of terrible side-effects, even on the smallest dosage.

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    • Posted

      Thats cool. Its where i lived when i caught a bad virus after having flu shot

      Ugh. Was beautiful there! Im taking valacyclovir now but not seeing a diff. Ive heard that also, about valcyte. Scary. I think ive has this too long for anything to help. Id be afraid of naltrexone because of my heart issues/angina. Isnt it like caffeine? What were your side affects? Are u still doing good after saline drip? I think it was u. Lol

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    • Posted

      Never heard of Naltrexone being like caffeine. But I'm certainly no expert on that. My side effects were suicidal thoughts, in a big way. I realized these thoughts were linked to the drug after seeing a commercial on TV! I think effects of saline drip are fading, 3 weeks or so after the drip (assuming it was the drip that helped me, and not the anesthetic or just natural ups and downs of illness). It's so hard to know what's happening. But I will see if my doctor will prescribe another drip, just to see if it helps. Possible side effects are almost nil.

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    • Posted

      Do you know what virus Jen had? I wonder if it was CMV because thats what valcyte is used for ,so google says. Just curious.
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    • Posted

      I have no idea. But you can Google "Dr. Jose Montoya ME/CFS." His protocol typically includes Valcyte, and this protocol is used by some other ME/CFS specialists here in the U.S.

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  • Posted

    Lisa: I recommended Unrest on this forum a while ago. I saw the film here in L.A. in a special screening with an audience full of people with this illness. After the showing, Jennifer and Omar did a Q&A with the audience, and I met them. I thought the movie was so well done, inspiring, and validating. I was also interested to see how they dealt with ME/CFS as a couple, because I'm married and this disease has of course strongly affected our marriage. Jennifer and Omar have single-handedly brought ME/CFS to the attention of a huge number of people.

     

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    • Posted

      That's great that you meant them. It took alot of courage for them to do this. I've been married for 36 years and have two beautiful grown educated daughters and a new granddaughter. This illness is very hard on family's and marriages. We have always used alot of humor. Alot! There was anger, indifference, some real acting out by everyone. I've learned that blaming myself and feeling like I'm letting everyone down daily almost killed me. I does not help at all. It made the situation worse. When I accepted the situation and learned how to function with boundaries it made life easier. Me being depressed and self blaming really hurt my kids. Don't do it!!!! It's a waste of precious energy. Live in the here and now. And get on with living even if it sucks. I get one thing done everyday no matter how small. I have to find the joy in life every day. Because we all little power over our bodies got to find it elsewhere. I make my own rules what I can and can't do. And if people can't respect that they can all kiss my ass!!!

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    • Posted

      Lisa--Hear! Hear! To everything you said. I, too, have been married 36 years. I've come to the exact same conclusions as you mentioned in your post. I do the best I can every day. Yes, a lot of humor goes a long way. Add in some chocolate and I'm good to go.

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  • Posted

    Hello hello, 

    I watched it this morning and I am now watching it again with my mum and her partner. I think it is brilliant and i feel less alone. It gives us hope and that is exciting. We will all be free from this horrible disease one day. Such a great film to show people what its like day in and day out. We are not invisible. 

    x

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  • Posted

    Yes I saw it this week. Very informative. Validating and well presented. I also watched an interview and to see Jennifer much better was very encouraging. It’s so hard to know “what to do” at times .
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