"Unrest" updates

[anniekim]

""From the moment Jen picked up a camera, Unrest has been about visibility, connection, and progress. Her hope was to change the way people think about chronic illnesses and bring to light the daily struggles of people with stigmatized and misunderstood diseases."

Above taken from a Unrest Facebook on Sunday - unimpressed with the stated aim. Increasingly disillusioned this film will achieve anything substantial - like pushing for governments to step up and devote serious biomedical funding for research. Bah, humbug!

 

[daisybell]

I disagree with you @anniekim - I think this film has real potential to change the public perception of our illness. I donated money to the initial kickstarter campaign 4 years ago - and then I spent quite a long time wondering where my 'reward' was and feeling that it was all taking too long, and asking for more money all the time...

But - it's been to loads of film festivals, which is an impressive achievement- and it seems a much more polished film than I thought was possible. It's going out to a much wider audience, and that surely must be an essential step to change things at the government level? If the general public and the media begin to change their view, then government has to respond...

I'm cautiously optimistic that this film might achieve what other films about ME have not - despite there being some great films already made - especially if the push for the wide viewing can continue.

 

[Hutan]

I have mixed feelings about the film, but the negatives probably stem from my unrealistic expectations.

The film is in the New Zealand International Film Festival and it has been screened at quite a number of venues throughout New Zealand. I was thrilled to see that it would be screened 3 times at the cinema closest to me. I watched it two days ago.

The film is an enormous achievement. That Jen had the strength of spirit and foresight to start filming early on in the illness and to put herself and her illness out there for everyone to judge is amazing.

However I felt that a number of issues weren't sufficiently fleshed out and resolved. For example, Karina's case. Per Fink comes across as relatively reasonable. We see the protests to get Karina back home, but when she is home we see her sitting on her bed in a well lit room looking quite healthy. And she doesn't say anything. And so it's easy to think, well, maybe she was helped by the treatment. (I'm not saying that she was - just that the story as presented in the film could well lead people to think that).

I didn't get why quite a bit of time was spent on images of a setting (or rising?) sun seen from a forest road. Was the point that Jen was getting pleasure vicariously through images filmed in real time by her film crew who were in places that she couldn't be?

It could be just me, but prolonged images of adults crawling on the floor and up stairs make me cringe. I really hope it's just me, but I found those images lingered in a way that the persuasive points like how MS was hysterical paralysis right up until technology developed to allow for scans revealing brain damage did not.

There were lots of positives. I loved Ren's song ( @trickthefox ). And the images of the shoes in the Millions Missing protests around the world. The inclusion of the many people around the world with ME with great stories to tell. The girl in the pool - sorry, I have forgotten her name - was radiant, she and her family were a shining example of how to cope. Nancy Klimas was great. And more.

It was brave of Jen to show how we end up trying all sorts of seemingly bizarre remedies in our desperation to get well - a point well made. And the film does show very poingantly the impact of the illness on Jen and Omar's relationship. Jen is humble in her portrayal of the Millions Missing campaign, making it clear that it was very much a team effort and probably greatly downplaying her role in making that happen.

In the screening I attended, there were about 15 people including me in the audience. Judging from the slightly unkempt hair and the blankets (I was envious of their forethought) and the way people slowly slid down in their seats during the film, many of the viewers had ME or were accompanying a person with ME. There was a group of 4 healthy people who sounded to be attending most of the film festival films.

I've been looking for reviews of the film arising from its screenings in New Zealand but I haven't seen any.

My son (also with ME) wasn't keen to go, so I said I would check it out and see if I thought it was worth persuading him. I don't think I will drag him there. Partly it's because I think he doesn't need or want to see quite so vividly what severe ME looks like. But also its because I think some of this film (and I think he would also have a very low tolerance for images of people crawling too) would make him question, more than he does already, if he is really sick.

I don't think I'll take family or friends along either because I couldn't bear it if they came out feeling more uncertain that we are really ill. Maybe, and probably, I am just being too fearful about that.

Maybe the kind of film I really want to see that is unequivocally convincing about the biomedical nature of ME just won't be possible until we get the equivalent of the brain scans in MS.

I will probably go to the next screening, to watch it again and pick up on the things I have missed.

I've struggled to put in to words what I thought of the film. When I left the cinema, I didn't feel validated or uplifted. I mostly felt sad. And I guess that's ok, because the current reality of ME is pretty sad and the film did show that very well.

I'd like to hear what others have thought about Unrest.

 

[Old Bones]

I'd like to hear what others have thought about Unrest.

Like you, @Hutan , the film didn't match my extremely high expectations, and I've wondered if this was the case for others, considering how few members of the forum have posted their reviews. Here's mine, originally written in an email sent to a long-distance friend with ME several weeks ago, and before reading your post above. It seems many of our impressions were similar.

"I think there are a few reasons I was disappointed. First, my expectations were very high based on the glowing reviews. Much of the content wasn’t new to me, and perhaps that blunted my reaction. I expected to consider it much better for advocacy than “Forgotten Plague”, and I didn’t. Ryan’s film was more factual/educational. Jen’s, in contrast, presented the experiences of several very severe patients and allowed viewers more opportunity to form their own impressions.

Except for a few seconds of silent footage of Ron Davis, Nancy Klimas was the only doctor featured. She expressed discontent regarding the impact of sexism on how ME has been perceived/neglected – a perspective I don’t think does the patient community any good.

I tried to view the film through the eyes of someone who knew little, if anything, about ME. The opening footage was difficult to watch – Jen during the early stages of her illness, dragging herself across the floor, and moaning. I felt embarrassed for her – showing such raw emotion and distress. A later segment was filmed at a Princeton University reunion. Jen started the day feeling energetic and in good spirits, and ended the day collapsed on the deck at home crying and flapping her arms in frustration over the “crash”. Now, an ME patient will understand that her “losing it” was due to pain and exhaustion. But a person with no context might interpret it as proof of emotional instability.

Similarly, although rather humorous, Jen’s impatience in dealing with Omar’s attempts to help may cause viewers to feel sorrier for him as the long-suffering caregiver, than for her as the patient – a mindset I’ve sensed from people regarding (Hubby) and me.

All of the patients filmed were very severe -- completely or mainly bedridden, and even hospitalized for long periods of time. Although I think it is important to show how serious the illness can be, doing so without showing some moderate to severe patients creates a credibility problem for those of us who look well on the occasions we are away from home.

I expected to feel kinship with the patient “stars” of the film. I didn’t – probably because there is just as much difference in functional ability between moderate/severe patients and very severe patients (eg. Whitney) as there is between healthy “normals” and moderate/severe ME patients, who despite being less ill are still very impaired.

Don’t get me wrong – I think what Jen accomplished is amazing, especially considering how ill she was, and still is when she doesn’t take care of herself. Perhaps she was too ambitious, and attempted to fit too much into the film. To me, it felt like a cobbled together collection of discrete segments, with poor organization and flow. Also, I would have preferred greater detail about fewer patients, and more clearly spelled out issues -- especially around the physical nature of the illness, and the current research. Those topics weren’t covered, or at least not enough to make a lasting impression on me."

There were approximately 60 in the audience for the screening we saw (in a very large, empty theatre). Most appeared to be patients, and friends/family of patients. So, I wonder if the film is largely "preaching to the choir". Perhaps that will change once it gets broader distribution. I hope so.

Like you, I decided I would not recommend the film to skeptical friends and family members, should it come to a festival or theatre in our city, or theirs. We traveled to a nearby film festival to see it, just in case. I'm hoping my opinion changes when I have an opportunity to view it again, with more realistic expectations.

I, too, loved @trickthefox 's song at the end. Much has been reported regarding the high-profile composer of the soundtrack. For me, Ren's song was the musical highlight.

 

[Kati]

I read with great interest @Hutan and @Old Bones 's review of unrest. This insight is very important for the patient population as much as the team that created the film.

Keep in mind that this film was created for the big screen and advices given by sundance and other big voices from the movie industry had the general public in mind, not patients.

Personally I had an opportunity to view the film and while my health status played greatly in steering my decision not to attend, I did not attend also because I felt that the general public, journalists, health care professionals and medical students needed to see it more than me.

Even if we as a community do not agree with everything about the film content or direction choice however, I feel that it represents a good starting point to engage in important discussions we need to have with our political representants, those decision makers who award research grants, those who are involved in health care research and lastly the physicians who invariably encounters patients like us.

 

[anniekim]

The film is an enormous achievement. That Jen had the strength of spirit and foresight to start filming early on in the illness and to put herself and her illness out there for everyone to judge is amazing.

Absolutely agree with the above.

Sorry I am in a bad relapse at the moment and can type very little but reading the comments with great interest.

 

[Hutan]

Just had to tell you about Jen's interview on New Zealand's National radio this morning with Kim Hill.

Kim Hill's program on Saturday morning is a national institution. I'm sure a large proportion of New Zealand's doctors and other people able to influence medical care sit down on a Saturday morning with their coffee and breakfast and listen to Kim Hill. Jen's interview was on first thing, so it will have had a big audience, before many people head off to the rest of their day.

And, you know me, my demands of our advocates are unreasonably high. I had quite a lot of problems with Dr Lapp's New Zealand radio interview a few months ago. But I am so very pleased to say that Jen was absolutely outstanding. It was vey good, very helpful.

http://www.radionz.co.nz/national/programmes/saturday/20170812
Here's the link, I'm not sure if it will work overseas.
It's worth a listen. For each morning, as well as the interviews, there is a record of the listener feedback that Kim reads out between interviews. That will probably be worth listening to as well.

Among the points made were:

• ME can be very debilitating

• The difficulty with the illness is compounded by disbelief

• Hard on relationships

• There are tests that show differences but they are non-specific. Mentioned natural killer cell function is reduced. Countered assertion that it's just depression. e.g. 2 day CPET gives results that you don't find in depressed people.

• Research has been lacking - saying the disease is complicated is not an excuse to not try to understand it. It may not be that complicated once we understand it.

• Likely to be an autoimmune disease

• Kim mentioned NZ's outbreak in Tapanui - Jen said that these outbreaks need to be studied, survivors followed up.

• Karina's case, forced removals. A result of a mis-perception about ME, that it can't be that severe.

• Existing drugs can help some people - e.g. anti-virals that came out of HIV research and Mestinon which is used for myasthenia gravis. 'This disease is not voodoo and is amenable to medical treatment but we need more research'.

• Kim mentioned a recent study - Jen clarified that yes, the Stanford cytokine study had come out last week. She noted that a new study comes out probably every two months saying 'look, finally proof that it's real!'.

Kim read out a text that she suggested would win the prize for most irritating text of the morning. It suggested that Jen was more focussed on illness than wellness and that she must have got attention when she was ill as a child (and so she now has ME for the attention it brings her..).

Kim thanked everyone for the feedback on ME, she found it very very interesting. She said that she couldn't think of a better representative for ME than Jen, with her statistics background and for being so energetic when she is not sick. Kim is not routinely effusive about her guests.

I will suggest that Kim does an interview with Professor Warren Tate and/or the team at Massey doing the CPET work. I think she will be interested to do more on ME.

This interview is something that I am very happy to recommend to family and friends. Thank you Jen.

 

[trishrhymes]

I've just listened to it in the UK (saw the link on Twitter). I agree, it is outstanding.

 

[AndyPR]

The most common disease you've never seen': how one woman turned her illness into a life-changing film

Jennifer Brea was 28 when she was bedridden with a high fever. As she explains, "I got better, but something wasn't right." She, like millions of people worldwide, had contracted Chronic Fatigue Syndrome, or myalgic encephalomyelitis, otherwise known as ME.
Suddenly, her life as she knew it, as a newlywed PhD student at Harvard University, was put on hold, as she became progessively more ill, losing even the ability to sit in a wheelchair. Doctors told her that her condition was “all in her head”. There was, and remains, no cure.

Then, four years ago, from her bed, Brea began to make a film about her experiences after keeping a video diary with her iPhone. In doing so, she gave a voice to those who suffer from "the most common disease you've never seen", and encouraged scientists and medical professionals to plough their energies into unravelling a condition that has mystified physicians for years.

Unrest won a prize at Sundance film festival earlier this year, and became one of the first titles to be released with the support of Sundance Institute’s Creative Distribution Fellowship, which aims to empowering entrepreneurial Sundance filmmakers.

http://www.telegraph.co.uk/films/20...-seen-one-woman-turned-illness-life-changing/

 

[purrsian]

Just had to tell you about Jen's interview on New Zealand's National radio this morning with Kim Hill.

I also recommended a listen for my friends/family on Facebook. Jen covered many important issues that I think would help others understand the serious nature of the illness, as well as major issues for us not often covered, such as grief, difficulties getting diagnosis/treatment, and that it's difficult to get a doctor to even believe you despite serious symptoms. She also spoke about sensory overload in a way that I really related to, which was nice as people don't usually mention it as a major issue.

I am SO excited to see Unrest on the 26th, listening to this interview and how articulate Jen is has just made me more excited!

 

[daisybell]

I also recommended a listen for my friends/family on Facebook. Jen covered many important issues that I think would help others understand the serious nature of the illness, as well as major issues for us not often covered, such as grief, difficulties getting diagnosis/treatment, and that it's difficult to get a doctor to even believe you despite serious symptoms. She also spoke about sensory overload in a way that I really related to, which was nice as people don't usually mention it as a major issue.

I am SO excited to see Unrest on the 26th, listening to this interview and how articulate Jen is has just made me more excited!

I totally agree re the sensory overload issue! I'm hoping to get my other half to listen as my issues with noise and light are one of the things he finds hardest to understand....

 

[Ravn]

Just had to tell you about Jen's interview on New Zealand's National radio this morning with Kim Hill.

Kim Hill's program on Saturday morning is a national institution. I'm sure a large proportion of New Zealand's doctors and other people able to influence medical care sit down on a Saturday morning with their coffee and breakfast and listen to Kim Hill. Jen's interview was on first thing, so it will have had a big audience, before many people head off to the rest of their day.

I agree, it was a very good and informative interview - for people who already have some basic background knowledge about ME (and one hopes that applies to any doctors listening to the programme...) but from talking to some people without that basic knowledge, they were totally lost, and lost interest. A pity it's so darn difficult to explain such a complicated illness in a simple fashion!
Let's hope Kim does do more interviews with other ME folks so a little more information and understanding trickles through to the general public as well as not quite up to date doctors.

 

[NelliePledge]

now up to $78k

 

[anniekim]

The NZ interview sounds good, too ill to listen to unfortunately. I still have concerns though. Jen Brea on twitter the other day said, "A lot of people w/ ME have POTS and I meet more and more w/ EDS.But there are also people who have POTS but no PEM, EDS but no PEM, MCAS but no PEM. As well as ppl who have all of the above. It doesn't mean that anyone dx is a misdiagnosis. But rather that it's probably a partial picture."

Sounds like she is saying above anyone diagnosed with ME but no PEM is not a misdiagnosis? If this is what she is saying and I think she is (feel free anyone to tell me if they interpret her comments differently) I am alarmed as PEM - that is rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen - is the cardinal feature of ME!

EDS is a separate diagnosis from ME. Yes, some people have both but not everyone with EDS has ME and vice versa, same with POTS. Any good from the film would be severely compromised if she starts promoting ME as an heterogeneous entity encompassing many different conditions. This is exactly what CDC did in 1988 when they invented CFS with its overly broad criteria not requiring PEM.

 

[Gingergrrl]

Likely to be an autoimmune disease

@Hutan I was curious what Jen said in the film that showed that ME/CFS was likely to be an autoimmune disease?

Also, do you (or anyone reading!) happen to remember where the link was once posted w/the schedule of upcoming showings? I thought I had bookmarked that link but now I cannot find it. I really want to see "Unrest" when it comes to Los Angeles and hope I have not missed it.

Jen Brea on twitter the other day said, "A lot of people w/ ME have POTS and I meet more and more w/ EDS.But there are also people who have POTS but no PEM, EDS but no PEM, MCAS but no PEM. As well as ppl who have all of the above. It doesn't mean that anyone dx is a misdiagnosis. But rather that it's probably a partial picture."

I am not on Twitter but in general her comments are very similar to the questions that plague me re: my own case. I do not have EDS but I do have POTS and MCAS (and other medical problems) but I do not have PEM and have never had "delayed PEM". Yet I have fellow sufferers from PR who very strongly feel that my diagnosis is ME/CFS, and I have others who very strongly feel that it is NOT my diagnosis, so I continue to waver back and forth (as it sounds like Jen might also be struggling with from that quote since there is no biomarker)?

 

[JenB]

Annie, what I mean is that it's possible to have POTS, EDS, MCAS (and fibro for that matter) without having PEM. These folks should not be diagnosed with ME as they do not meet the criteria, which requires PEM. There are however many folks with ME + POTS, or ME + EDS, or ME + MCAS (in part because POTS/EDS/MCAS all seem to share a genetic link http://mentalfloss.com/article/87506/one-gene-mutation-links-three-mysterious-debilitating-diseases). To make things even more complex, many of the symptoms of POTS/EDS/MCAS are listed in the ICC (orthostatic intolerance, hypermobility, food and odor sensitivities, for example). I've heard now several researchers say that EDS can be a risk factor for later developing ME after an infection.

My comment was in response to someone with MCAS asking whether person X really has ME OR MCAS, as though it's an either or thing. If you have EDS (and ME) and get an EDS dx, it's not a question of figuring out whether that person *really* has EDS or ME. Or ME or MCAS. Rather, it's perfectly possible they meet the criteria for both.....especially since these comorbidities are all essentially hinted at in the ICC. Personally, I have both in addition to POTS (although the ICC implies that as long as there is PEM, this is all just ME).

I support using the CCC or ICC definition. I have never meant to say or imply otherwise. I am also enthusiastic about reaching out to these disease communities and their researchers as I believe these conditions are related. Even if they prove not to be, there are many people with these diagnoses who have ME but do not know it and are not properly managing their energy/pacing. The number of people without an ME dx who come up to me after screenings and say, "I have your onset, all of your symptoms, but I don't have your dx" is troubling.

Twitter is a hard medium. The TED Talk is the best public conveyer of the message I am putting out there in the world.

I did not say in the NZ interview that this was an autoimmune disease. I was saying that b/c of the infectious onset, the 80/20 gender split, and the autoantibodies several researchers have had, ME follows a similar pattern to other autoimmune diseases in these regards but we need more research. (And whether autoimmune or autoinflammatory is the right wording remains to be seen.) On a personal note, I am a responder to Mestinon, so my guess is that I'm in that subgroup that has these autoantibodies http://me-pedia.org/wiki/Acetylcholine Mestinon helps me a lot with my muscle fatigability.

Thanks everyone for your kind words about the film. It's not everything for everyone (and never could be) which is why it's great that there are many films and hopefully, more to come. I'm sorry there wasn't a better turnout in New Zealand. We've been getting huge, sold out screenings pretty much everywhere we go, but we didn't have the capacity to invest much in NZIFF in terms of outreach. It's hard to pack theaters with very little publicity or marketing. And when the theater is full (as it was in Melbourne https://www.facebook.com/unrestfilm/posts/946434078827659) it's just a very different audience experience. But we need the community's help to get the word out wherever we go and to help bring in the audiences that we most want to reach. So if we come to your town, the screenings can have the most impact if local organizations and individual organizers use these screenings as outreach events.

 

[Hutan]

Among the points made were:

• .....

• Likely to be an autoimmune disease

@Hutan I was curious what Jen said in the film that showed that ME/CFS was likely to be an autoimmune disease?

I did not say in the NZ interview that this was an autoimmune disease.

Jen says in the interview at around the 6 minute mark following comments on the findings of autoantibodies in a subset of patients:
'So, it does seem that this could be an autoimmune disease. And one of the other reasons why I think it is an autoimmune disease potentially is that many autoimmune diseases also are triggered by your body's response to an infection and, on average, autoimmune diseases affect 80% women, and so does this disease. So there's probably a pattern that suggests it but the science isn't conclusive yet'.

 

[Gingergrrl]

Jen says in the interview at around the 6 minute mark following comments on the findings of autoantibodies in a subset of patients:

Thanks for clarifying what she said and when I said "likely" I was quoting what you had written above but I am not on Twitter and did not hear the interview from NZ so I did not know anything beyond that. I apologize for any confusion! It sounds like she thinks it might be an autoimmune disease b/c it might be triggered by the body's response to infection, women are 80% affected, etc, but the science is not there yet so we really do not know.

Edit: From the Unrest website, it looks like it is not coming to US theaters until Sept 22nd which is not too far off!

 

[anniekim]

Thank you @JenB for explaining that I had misunderstood you and you were not saying if someone did not have PEM that a diagnosis of ME would still be correct. I am relieved to hear that and sorry I misunderstood you. I'm not on Twitter so could not ask you directly. Also someone did ask you in that Twitter discussion whether you were saying that you don't need PEM for a diagnosis of ME but for some reason you did not reply, further making me worried this is what you were saying. Once again I am sorry I misunderstood you.

 

[JenB]

No worries! With all the activity around the film, I get a large number of RTs/mentions. No way I can see all of them.