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Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

Kati

Kati

Patient in training
Messages
5,497
erin said:
I can't wait to see the film, anyone knows when it will be released?
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Next year on PBS. The film will be presented at the Austin (Texas) Film Festival next month. These are great opportunities to show the film to people outside out community which is very much needed at this time.
 
Kati

Kati

Patient in training
Messages
5,497
erin said:
Next year? Very long wait unfortunately.
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It's a very long wait, however the impact that Unrest has had at Sundance is invaluable, reaching to audiences that could not be reached otherwise.

@JenB and her team know what they are doing and what needs to happen for maximum impact. I trust her judgement and her decisions and while it may be disappointing for our community, what we can do now is 1) increase awareness of Unrest on social media, 2) join unrest mailing list/ facebook page 3) get involved in staging screenings in your area.

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erin

Senior Member
Messages
885
Kati said:
It's a very long wait, however the impact that Unrest has had at Sundance is invaluable, reaching to audiences that could not be reached otherwise.

@JenB and her team know what they are doing and what needs to happen for maximum impact. I trust her judgement and her decisions and while it may be disappointing for our community, what we can do now is 1) increase awareness of Unrest on social media, 2) join unrest mailing list/ facebook page 3) get involved in staging screenings in your area.

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I understand public need to be aware, I'm not so sure about one year delay. Too long for our community. All we do is wait; we wait for medical research, we wait for others to understand what we're going through, we wait for our supplements to reach our address, we wait for hospital appointments, we wait for test results, we wait for public to be aware. Our life is consisted of waiting. And we deteriorate. I hope I'll still have my health reasonable to watch this. I sometimes doubt, some of us getting worse by the day.

I still am not too sure that the ordinary public is interested in an illness documentary so much. They might even forget it in a year time after they viewed the film somehow. Many people will watch stuff online rather than going out anyhow, especially if they want to be informed.

Probably science, medicine, media (to a degree) but mostly ME community; carers, families and friends and lastly patients are most interested in this film. I guess we wait another year, all we do is waiting anyway. Not many of us will be able to go and see the film in a festival venue or in a cinema for the obvious reasons. By the time it'll be available online it will be years -though this film is about us, ME community.

Sorry about this rant, I'm sure Jen B. knows what she's doing and she is doing her best to get the awareness. I admire her courage sacrifice going out there and doing this not for only herself but for the ME cause.

Naturally, I am telling everyone about the film, sending links etc; some are not interested, some are polite and act that they are curious about it, and some are interested and they are asking when will it be released...
 
Riley

Riley

Senior Member
Messages
178
Personally, I am much more interested in others outside the community seeing the film. Therefore, I am glad that they are taking their time with festivals and distribution.

It doesn't matter that much to me when I get to see it. I know what life with this disease is like as does my family.

Honestly, I usually avoid media about patients lives because it makes me examine my own life from an outside perspective, and it's extremely depressing.
 
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erin

Senior Member
Messages
885
Riley said:
Personally, I am much more interested in others outside the community seeing the film. Therefore, I am glad that they are taking their time with festivals and distribution.

It doesn't matter that much to me when I get to see it. I know what life with this disease is like as does my family.

Honestly, I usually avoid media about patients lives because it makes me examine my own life from an outside perspective, and it's extremely depressing.
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I totally understand what you're saying here, I guess we're all different. I am really interested in other patients lives for my own reasons. I'm very keen to see what Jen B. herself researched a lot about the disease.
 
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PDXhausted

Senior Member
Messages
258
Location
NW US
viggster said:
Here's a FAQ regarding where/how to see the film.
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Thank you for this! I was wondering if the Kickstarter downloads would come before the PBS premiere and that answered it.

Riley said:
Honestly, I usually avoid media about patients lives because it makes me examine my own life from an outside perspective, and it's extremely depressing.
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This is true for me too, I think my main coping mechanism for dealing with the horror of this disease is just to try not to think about it...
 
Insomniac

Insomniac

Messages
761
Location
Israel
One thing bothers me about this TED talk.
At no point does Jen Brea mention the overwhelming exhaustion of this illness. I understand that she wants to avoid using the "fatigue" word. Fatigue doesn't describe the overwhelming exhaustion of this illness.
...But still, how do you miss the most overwhelming hellish obvious symptom of this illness that stands out above all?

I checked the lecture and she didn't mention exhaustion, sleep or severe weakness once.
If the title wasn't about ME/CFS I would have assumed that she had a different illness to me.

It makes me wonder if she has the same as me. (Of course she has...I hate the unsureness of not having a proper diagnostic test, or even a proper serious criteria, like the on efrom 1969.)

I don't want to be ungrateful. I think Jen is a hero. I just feel bothered by this.




This means that I can't used the film to raise awareness in Israel.
In Israel all the severe ME patients get thrown to the fibromyalgia category. So if you have ME you suffer that horrible experience that I had, going round "fibromyalgia" support groups and wondering why you are the only one there who can not work or improve with exercise. I want to reach those people. I can't reach them using this film.

We still posted the film on the only Israeli CFS/ME/POTS facebook page in existance, but I decided not to work on a translation or synopsis in Hebrew for this reason.
 
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trishrhymes

trishrhymes

Senior Member
Messages
2,158
Surely the fact that she wasn't able to get out of bed for two years implies exhaustion and weakness. I think it's a great awareness raising talk. For me it gives a clear flavour of the level of disability that many patients suffer. Of course, in a 20 minute talk she couldn't spell out everything.
 
H

Hajnalka

Senior Member
Messages
910
Location
Germany
Hi Redrachel,

Yep, like Trish says, she was bedridden for two years. And I think that the pictures of her in bed and of the other sufferers (like Whitney who has to be carried) convey a powerful message of exhaustion. And Jen explains PEM: "Whenever we exert ourselves, we pay and we pay hard.". She explains that she might be bedridden, if she tries to walk half a block. And that ME is "a perfect custom prison". "It doesn't matter what you once were, you can't do it anymore." I think all of this describes our level of exhaustion and what happens if we try to fight it very well. I translated it into German. Maybe you could reconsider translating it into Hebrew? I guess in Israel is not much else information available, like in Germany. :hug:
 
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D

DeceptivelySlow

Messages
38
Location
SE USA
Simply an outstanding Ted Talk by Jen and I am very much looking forward to seeing Unrest. I showed her Ted Talk to my wife and it really opened her eyes as to what people with ME/CFS go through. I think it is impossible for the general public to understand what this disease does to people by hearing or reading passing news stories using the horribly vague term fatigue; after all everyone gets fatigued at one time or another which gives people a completely wrong picture of ME/CFS.

I didn’t start researching ME/CFS until I started suffering from chronic malaise (not from ME/CFS in my case) but mild ME/CFS is what most resembles my condition. It was a real eye opener for me when I found this site and realized what people with severe ME/CFS go through.

It can do nothing but help to increase public understanding in such an eloquent and heartfelt manner.
 
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