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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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"Unrest" updates

CFS_for_19_years

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
slysaint

slysaint

Senior Member
Messages
2,125
Haven't seen Unrest yet, but I did watch Lady Gagas documentary (5 foot 2) last night........didn't know anything about her before.
It was a bit all over the place, noisy, fast moving (not recommended viewing for pwME); but it did show the periods of intense all over pain she goes through. Her Fibromyalgia seems to have stemmed from a hip injury a few years ago.
But her lifestyle and unrelenting work schedule are just mind-boggling to those of us who find a trip to the shop a major event in the weekly routine.

eta: one thing I forgot to say, she (Gaga) has a team of doctors and therapists and in one bit said something along the lines 'I don't know how other people go through this; I have all these people to help me'.
 
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Groggy Doggy

Guest
Messages
1,130
Lady GaGa is ill and unable to perform; she is only 31 years old. She's either cancelled or postponed parts of her Joanne World Tour. (In the five foot two documentary, she talked about why she dedicated the tour to Joanne). She plans to get back on the stage on November 13. But as you could see from the documentary, she was having health crashes even without the stressors and demands of performing.

It's sad for anyone, whether famous or not, to manage the daily struggles of "living" with a debilitating chronic illness; and most especially an illness that's poorly understood and has stigma associated with it.
 
Daffodil

Daffodil

Senior Member
Messages
5,875
lady gaga has fibro??!?

I had no idea this film was so huge and had gotten the attention of so many. This is beyond AMAZING!!!!!!!!

I was refusing to see it because I felt it would be too depressing since I knew some of the victims who passed.
 
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Groggy Doggy

Guest
Messages
1,130
Daffodil said:
lady gaga has fibro??!?

I had no idea this film was so huge and had gotten the attention of so many. This is beyond AMAZING!!!!!!!!

I was refusing to see it because I felt it would be too depressing since I knew some of the victims who passed.
Click to expand...
Between Unrest and FiveFootTwo, I feel more hopeful about reducing the stigma for ME and Fibro
 
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Gingergrrl

Gingergrrl

Senior Member
Messages
16,171
I didn't get a chance to post this earlier but I saw "Unrest" last Fri night and it was my first time seeing a movie in a theatre in 3+ years! I met a close friend from PR there (who no longer posts) and a few other members from PR also attended and it was great to meet them and attach the person to the Avatar! I don't know if they are comfortable w/me sharing who was there so will not mention anyone by name.

I am not able to climb stairs (to the regular movie seats) but luckily there were two seats available for people with wheelchairs that were still free (which was very lucky b/c there were many people in wheelchairs at the film and the theatre was sold out)! I can transfer out of wheelchair and walk short distances but am still limited. I got to sit with a new PR friend and chat about our experiences which I really enjoyed and then after the film, I got to meet up with my long-time friend and spend some time with her.

The film was beautifully done down to the last detail. It was both a documentary about a severe illness and a love story with several scenes that made me cry. If I had never heard of ME/CFS and had seen that film, I would have left without a shred of doubt that ME/CFS is real, it stops life as we know it in it's tracks, it is not recognized or funded, and we need to take action NOW. It also showed us an intimate view into the lives of Jen & Omar as well as several other featured stories including Whitney Dafoe, Jessica Taylor, Karina Hansen, and a few others.

The end of the film was dedicated to the memory of those who have died and I knew three of the people, and one of them, Justin Noble, I knew quite well from months of chatting almost daily with him via PM until he passed away. I was not expecting to see their names and was very glad I had brought kleenex with me!

"Unrest" also solidified for me how different my symptoms are than those in the film. The biggest symptoms which caused my life to come to a screeching halt were POTS w/initially uncontrollable tachycardia, MCAS/allergic reactions, and muscle weakness that affected my lungs and diaphragm so I was constantly short of breath and made my arms too weak to even open my front door in an emergency. The POTS, muscle weakness, and shortness of breath are what led to me using a wheelchair 24/7 since Oct 2014. I was severely limited and disabled yet I had never understood the concept of "PEM" (b/c I do not experience it) and after watching the film, I now do.

The film showed me how you can appear "normal" or "fine" one day and then be nearly comatose/dead during PEM. Versus for me, my days were all the same (and it is only now after high dose IVIG & Rituximab that I have had vast improvement so my days are still the same, but now just at a much higher level). I don't think the film made any reference to POTS, MCAS, or ME/CFS co-morbidities (which I have without having the actual ME/CFS part). Yet I related to just about every scene of searching for a doctor who believed you, getting endless tests, trying endless meds & supplements that did not help, having your career and future life plans all end in an instant, etc.

I also find it so interesting that I have 7 of the 9 Cell Trend autoantibodies that were tested in the Fluge & Mella study and I am a responder to Rituximab. I am certain that my illness is very similar, with a great deal of overlap to ME/CFS, yet different at the same time. I have the calcium autoantibody that goes with LEMS (yet negative on EMG for LEMS). I believe the people with proven B-cell driven autoantibodies are the potential responders to Rituximab even if we have different illnesses in the end.

The film also solidified for me the need for advocacy for all illnesses in which people who were functioning out in society in our normal lives (school, work, socializing) and able to walk, climb stairs, drive a car and do normal tasks and then we just "disappear" yet have not died and are still alive but are hidden in plain sight. I refer to all of us as the "Hidden Illness Community" and the government just wishes that we would go away and easier for them to pretend that we do not exist. Jen mentioned in the film how 80% of people with autoimmune diseases are women and how women are taken more seriously in doctor appts if they have their husband or a male w/hem and this has been my experience as well.

After the film, there was a Q&A and Jen was supposed to attend but she was not feeling well enough after flying from NY back to LA (after being on the Today Show!) so she stayed home to rest and her husband Omar did the Q&A. He was extremely impressive and he talked about the "virtual screenings" so people who are homebound or bed-bound can watch "Unrest". I was so honored that my first movie in a theatre in 3+ years was this one. I really cannot recommend it highly enough and look forward to Jen's next film which I will see and support no matter what it is.

Edit: I have not yet seen "Five foot Two" but hope to see it in the future and have always loved Gaga and saw her in concert before I got sick.
 
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Hajnalka

Senior Member
Messages
910
Location
Germany
A little victory for Unrest and all ME patients! On this occasion I have to quote myself for the first time, sorry :):
Joh said:
In case you didn't see it. The Unrest trailer was first on Youtube. Then the lawyers of the comedian RG who is shown making jokes about us, shut the video down. The trailer that was on the Unrest homepage and had already been shared on movie sites, social media etc didn't work anymore (and our subtitle work was lost).

Apparently the Unrest team was pressured to cut out the scene. Instead they decided to move the trailer to Vimeo and kept the scene. (I'm so glad! It's a powerful scene to show what we're up against.) People asked if they should twitter RG about it but we were asked not to. It's unclear for me if he also tries to do something about the movie.
Click to expand...
Jen just announced that they disputed the takedown and that it took time but now the trailer is back up on youtube! And the scene is still included. :balloons: For me it's not so much about having a trailer on youtube, but that they didn't accept being silenced and won.
 
P

Philipp

Messages
80
Joh said:
For me it's not so much about having a trailer on youtube, but that they didn't accept being silenced and won.
Click to expand...

Isn't the fact that this comedian even attempted to do this basically an admission of 'guilt'? If he stood by his work he would not bother to even attempt this. It is hard to see how the context in which his joke is presented could change much about it in this instance. If you make fun of someone you should expect the people you made fun of to possibly be offended. I mean, do you think John Oliver cares if any of the people he called out for various stuff over the years are offended by what he said about them?

If this leads to you being shown as an example of how cripples are being made fun of in society and you are not all right with this, maybe you as a comedian should have come up with material that you are fine with being shown to an audience. In my opinion, this situation is not RG being quoted out of context or misrepresenting what he said. This is calling him out for what he does, as an example for what we have to put up with on a daily basis. If you are too thin-skinned to deal with that, you are probably in the wrong business.
 
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