More Than Just a Film
“riveting……equal parts medical mystery, science lesson, political advocacy primer and even a love story.” San Francisco Chronicle
From the beginning Jen Brea’s vision has been a very large one of which Unrest was just a part. Unrest has always been more than about making a film; it’s a strategic attempt to produce a worldwide shift in how people view ME/CFS. ME Action – which Jen co-founded – was simply another part of the strategy. It’s served as a platform for ME Action and for Unrest. Jen’s fantastically successful Ted talk – seen by over 400,000 people – was another part of a well thought out and brilliantly executed strategy to educate people and incite action, both within and outside the ME/CFS community.
Through this expanded sense of community and connection, and by coming together to take action around the campaign, we are doing so much more than raising awareness, we are organizing – building the capacity, networks, and human infrastructure required to achieve massive, long-term change..Unrest
The strategy is working well. As of last week, Unrest had received 521 screenings in 22 countries (!). The film and Jen Brea have been reviewed or interviewed 229 times (!). The film’s screening in the very heart of the push for CBT/GET – the British Parliamment – and the advocacy campaign associated with it, undoubtedly opened eyes and sparked some re-thinking. The film prompted the CDC – the conservative CDC – to do its first ever continuing medical education event (CME) in a theater. That event drew over 100 CDC health professionals. The fact that doctors could get continuing medical education credits by watching the film and participating in the educational event was in itself an extraordinary validation of the film.
Unrest’s biggest coup, however, may be in making the latest cut for Oscar consideration. With 180 entries, the competition was undoubtedly fierce, but little Unrest, just a dream in the eye of a very sick, ex-Harvard graduate with no film experience five years ago, is now vying with 15 other documentaries for the biggest stage of all (33 million viewers). That’s a pinch yourself accomplishment. Unrest now has about a thirty-three percent chance of being one of the five films considered for an Oscar. It’s going against documentaries produced by the New York Times and Netflix, but its compelling story with its oh so compelling star, and its focus on gender bias in the medical field, might just give it the edge it needs.
“We’re Not in Kansas Anymore”
The key for Unrest and the ME/CFS community is getting it into the national conversation, and that is happening. Unrest has moved from a small independent production with unlikely prospects into a widely lauded, discussed and important film.
Jen Brea and her husband Omar have already appeared on Megan Kelly and the Today show. On Monday Jen will be the featured guest of another media powerhouse when she talks with Dr. Oz. Check out a trailer here.
Unrest will be part of PBS’s “Independent Lens” series – seen by 1.2 million viewers a week – on January 8th 7PST/10EST – and will be available to stream for free on the PBS website starting January 9th. Interested in hosting an Unrest house party? Unrest will help you do that. Contact them here for more.
Unrest is going to have a continuing impact for a long time. The film is now available in a variety of outlets, including Amazon.com for just $9.99, making it easy for ME/CFS patients and their advocates to purchase it for themselves or others and have home screenings. Want to host a public screening? Find out how here.
As the buzz around Unrest spreads, it will hopefully move into even more media outlets. For a straight shot at the decision-makers in DC, how nice it would be to have a thirty minute segment with Christiane Amanpour, Charlie Rose’s replacement on the acclaimed PBS show. How about late-night TV? As a Harvard graduate with a mysterious illness who got shafted many times by the medical profession, Jen Brea has a jaw-dropping story that fits well into that genre. Plus she’s as photogenic as can be. I can see Unrest’s progress in the media growing and growing.
Inserting ME/CFS into the National Conversation on Women’s Oppression
Inserting Unrest into the national conversation on the oppression of women would help too. Thanks to the work of Emily Taylor of The Solve ME/CFS Initative and Bobby Ausubel, the National Organization of Women (N.O.W.) is now doing that with its support of ME/CFS. N.O.W. promoted Unrest – and asked its members to give Unrest House Parties – in its most recent newsletter,
Next month MS. magazine will publish an article by Julie Rehmeyer titled ““Pain and Prejudice – Women suffering from chronic fatigue syndrome remain undiagnosed and untreated, for a tangle of reasons with sexism at the core.”
Unrest could get the gender bias that has hampered ME/CFS for so long into the national conversation
Sexism is undoubtedly a major part of the reason that ME/CFS and fibromyalgia have been largely disenfranchised in the medical field. You have to look no further than the miserable NIH funding provided for common diseases like fibromyalgia, migraine and ME/CFS, which primarily affect women, to see that.
If we could broaden the national conversation on women’s oppression and dis-empowerment at the workplace to include similar problems in the medical field, we could go a long way..
It was already hard enough without ME/CFS or FM for women in the workplace. Many women, for good reason, probably felt they had to work harder to get the same respect and pay as men do. That meant aiming for perfection; being always competent, on-point and professional, and above all allowing no chinks in their armor to show.
Add sexual abuse or the possibility of it to the equation and you have a really stressful situation. One of the worst outcomes of sexual abuse in the workplace is the powerlessness women have felt. They’ve had no good options; they can leave the situation, report the abuse and possibly get blacklisted, succumb or simply struggle through it.
But now add in a controversial disease such as ME/CFS and/or FM. You’re now a woman with a suspect disorder that your medical professional and your colleagues may have laughed off or at least discounted. (How bad., after all, could something called “chronic fatigue syndrome” be?)
Again no good options are present. You’re probably not going to be believed; reporting it could affect your career, but struggling through it will only work for so long. Back into the workplace you probably go, determined to tough it out, and then the inevitable happens.
Let’s hope the sexism and gender bias at the NIH and in the medical field that has lead to so much misery will become a part of the national conversation as well.
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I’m a male, 76 yr old. My ME symptom started in 2013. I didn’t have a fever or any severe disease at that time, the fatigue, body aching feeling just crept on me, getting worse and worse. None of my doctors, PCP, specialists, knew what’s going on. I did my own research to find out that I must have got this sickness and turned around to inform them there is such a thing called ME/CFS. I doubt this is a sickness mainly in female population. The number of male patients could be under-reported, due to toughing it up mindset, especially under the situation that your doc tells you that every test is normal. The current research is a mess, in my opinion, too many different directions, second guesses. Wish researchers could put their heads together, use resources wisely, and come up with some real diagnostic methods, treatments soon. I pray.
I agree with you. I see no advantage in painting M.E./CFIDS as a woman’s disease. My late husband was just as ill from it as I am now, and he endured a raging case of Multiple Chemical Sensitivities at the same time. It does not help boys and men to be told they have a disease of women, when they are just as ill and just as disabled. It gives doctors one more reason to miss the diagnosis altogether in men. Best estimates are that at best one in 5 is ever diagnosed, so let us not give doctors more reasons to fail in that initial diagnosis, and scorn the patient too. Sick is sick, disabled is disabled. Being categorized in Women’s Health at NIH did not give us any advantage in research or respect from treating physicians.
While men obviously do get this disease – I am a case in point – it and fibromyalgia do both predominantly effect women. So does migraine. All three of these diseases vastly underfunded by the NIH and have a history of being viewed as psychological terms.
I think there’s a complex interplay between the gender imbalance, the fact that these diseases are “invisible”, and don’t generally kill that is helping to hold these diseases back at the NIH – despite that fact they all cause huge economic burdens and affect many.
It’s interesting that the same general gender imbalance – about 75% female – occurs in autoimmune diseases – which points to another reason to potentially focus on the gender imbalance – women’s immune and hormonal systems.
Women’s immune and hormonal system are simply more complex than men’s – a fact that has only recently begun to be taken into account with animal studies – which heretofore have almost exclusively used male animals. Something about that complexity may be what results in a greater risk factor for women.
While it’s true that the ORWH couldn’t help us that much – that was mostly because it had such a small budget and such little clout (another gender issue?). (We were actually lucky to get picked up by them – if not for them we would have been out of the NIH completely.
I agree that focusing on the gender imbalance will probably make more trouble for men, though. That just seems inevitable.
I agree with Cort’s observations, which is directed at funding research. Possibly, when the truth comes about, men are equally affected, and men speak up, refuse to be bullied by stigmatism, we will see a shift. We are finding far more men affected by FM than previously thought. Possibly with the reclassification of headache disorders by the International Headache Society we will see a shift. There are some types of severe headache that affect more men than women. Women report their symptoms better for a variety of reasons. The bias is real and it does affect research funding. TY, Cort for all the wonderful resources.
I agree that ME is probably more under-reported in males than females for the reasons you state and that is partly the fault of us males for being less ready to seek medical assistance when we should. I know many men that are pretty sure they have ME, but won’t go their GP because of firstly the stigma that already accompanies the illness and secondly the stigma of it being perceived as predominately female, whereas most of the females I know that have the illness have to their credit done something about it. I’m not sure that highlighting the statistical incidence by gender of ME [or any other illness that afflicts both genders] benefits the cause; it could be seen as a type of ‘positive discrimination’ – a strategy that doesn’t always have the effect intended.
Men with this disease need to be supported and encouraged to go for medical care. It is not just a woman’s disease although it does seem that there are more women who have it than men. That doesn’t discount the importance of men in the picture. My heart goes out to all people with this terrible disease. I was hit hard with it 9 years ago well at work and the sudden onset was terrifying, I thought I’d had a stroke. I was only 52 and very healthy up to that point. I do personally know some men with ME and fibromyalgia. I hope I can make it through watching Unrest.
The 1985 Lake Tahoe Mystery Illness was not perceived as a women’s disease during the outbreak.
The illness was hitting primarily teachers and casino maintenance employees, most of whom just happen to be women.
In the documentary “I Remember Me”, the chief of the Lake Tahoe visitors bureau, Don Steinmeyer is shown saying “When the quack doctors “discovered” the illness, it was most middle aged overweight women”
He didn’t really believe that. Don knew the illness was very real. This was an invention to defuse the scare of the outbreak to try and bring tourists back to Lake Tahoe.
When I saw people talking about this incident later, I see that they accepted the rumor without question, and repeat it to others as if it were true.
Erik,
I have always admired you from afar. I had what I would consider a moderate form of the disease for about 18 months, and the a mild form of the disease for the next 18 years before I collapsed and became bedridden. Do you think I could benefit form mld avoidance? My house does not look moldy but it is? I apologize if this is off topic. Either way I would like to have a dialog with Erik depending on his availability. Thx.
I don’t know whether Australia is typical but here men’s health is woefully funded compared with women’s health. See the below article quote.
“A SPECTACULAR gender gap has resulted in men’s health problems being allocated a quarter of the funding women’s health research gets, ranked just ahead of parasitic infections.
This is even though men die four and a half years earlier than women, and are 60 per cent more likely to die from cancer.”
Hi Chris, I am in oz. i am surprised by those stats. I would guess that a high percentage of research money goes into cancers …which is the same for both sexes. Heart disease…applicable to both sexes. Is it possible that the higher rate of male death you quote from cancer comes back to the somewhat stoic attitude of men and that they perhaps seek help too late? With regard to health ..we need to encourage men to seek advice and diagnosis earlier.
Another oblique observation in that arena is that the women I see are often to be more interested in dietary influence and preventative measures. The men are often less interested in such matters until they have a health ‘issue’. Hopefully we can encourage an improvement in both encouraging young males to be more health proactive and seeking medical help earlier.
As for casting ME/CFS as male. Hmmmmm. Many pros and cons. I hope the men in this forum provide their opinions in this regard.
Thank you for all your hard work cort. I think it is time to say that this disease not only destroys your life for decades but does cause cancers heart issues ect. We need to stop saying that this disease does not kill people it does. I have 3 cancers from this disease. I hemoriged out form this disease. Progessive white matter lsiones, dysautonima and on and on. Personaly I donrt believe in bias between men and women. If doctors in general don’t know the disease they scoof it off both men and women doctors. Most doctors are interested in fast easy diagnosis they make there money that way. make no mistake we have all been abused. Men also have the burden of being bread winner ect. we also are supposed to be stronger. These are inherited from the days prehistoric, That all said I care for everyone and if we can get more help and funding by calling this a womens disease Im not against that
I’m glad for more visibility of the illness. However, I can’t for the life of me understand why no one sees the contradiction inherent in the N.O.W.’s fanatical support of the abortion industry, which kills half-a-million females in the womb every year. And I’m supposed to believe the N.O.W. has women’s (those with ME/CFS or otherwise) best interest at heart? You must be joking!
I had ME for over 6 years. The; saw a BBC documentary on intermittent fasting and how this was supposed to prevent the developing of several sicknesses like Parkinson, Alzheimer, diabetes, some sorts of cancer.. plus keep you healthier and possibly live longer and lower inflammation. And maybe lose weight. I had lost all directions in life so I started fasting the next day (I did what is known as the 5:2) and I wish I could say this would be a cure to everyone’s ME .. 2 weeks into the 5:2 I was on a mountain crosscountry skiing. I didn’t get very far but energy was bubbling inside of me and I BELIEVE fasting reduced inflammation in the neural tissue in my brain (Japanese scientists have found this in ME brains). I recovered. My husband is flabbergasted at the miracle. I can’t not share, even if it may not work for everyone. If someone would like to watch the documentary it is called “Eat, fast and live longer” by GP and journalist Michael Mosley. It used to be available on Horizon.
Either way I believe inflammation is the key topic.
I wish you all recovery and happiness ?
I am so happy for you Liza! and please keep sharing.
Intermittent fasting has worked for others. It doesn’t work for everyone but hey – this is a very heterogeneous illness – that is crystal clear so thanks Thanks for passing the word. I’m sure that others will benefit.
Fasting is often considered to reduce inflammation. Maybe more accurately: eating no more then you need is considered to reduce inflammation. As ME/FM has good chances to be in part an inflammatory disease it does make sense.
Not eating too much is therefore part of my routine and I feel it kinda supports my health. I had quite a period that was close to partial fasting but it did not help me substantial above not eating too much. Maybe it’s because I already practiced not eating too much for quite some time so there was less gut damage to repair?
I believe partial fasting helps restoring balance in the gut. At least I can say my gut isn’t that troublesome to me despite my disease, whatever the cause of my reasonably good gut is.
I just want a test to come out so this gender issue will become moot and effected individuals can be better positioned to win a disability claim. Finding therapies and a cure is one thing but in the meantime let’s just get to where we can live without being a burden on our families and community.
Hear, hear…
The following is an extract from the European Commission to a question, submitted by Alex Mayer MEP, re funding for research on ME/CFS: “To date, no specific projects on ME/CFS have been supported by the EU Framework Programmes for Research and Innovation”.
Google “E-006901/2017” for the full question and answer.
The following is an extract from the European Commission to a question re funding for research on testing for Lyme disease: “Overall—-a total EU contribution of EUR 40 million”.
Google “E-003624-17” for the full question and answer.
Look at Maureen Hanson’s (and others e,g. C Tomas) publication re energy changes in cells [Seahorse] and Mark Davis’s work on T-cell clonal expansion. These, to me look interesting re diagnosis. However, we need funding and if the issue of gender inequality (I believe there is) helps, then I think that is OK.
A big zero from the EU Commission for ME/CFS research; they have 80 billion dollars in the EU Horizon 2020 fund.
Contact an MEP to ask why ME/CFS research is not being funded; don’t worry if your not in the EU (I’m in the UK so were leaving the EU soon). Preferably try a female MEP given the higher proportion of women affected and the lack of funding by the EU Commission.
One thing that I am increasingly seeing is that toxic mold (which appears to be a strong risk factor for getting ME/CFS) is turning into a social justice issue – that is, with people who live or work in poor living conditions being more likely to be made sick or to have their illness severely exacerbated as a result of unusually problematic mold exposures.
And since women are economically disadvantaged compared to men, they seem to be more likely to be living in poor living environments (such as public housing or poorly maintained apartments or homes) where they are more likely to be made sick.
I do not think that this is the only reason for the existence of the gender gap with regard to the illness, but I do think that it’s something of relevance to be considered.
I touch on this topic in this article.
http://www.paradigmchange.me/wp/grey-gardens/
Thanks for bringing up this topic, Cort.
I caught only the trailer of the Dr. OZ show. Why does he consistently say this isa treatable disease. There is no uniform treatment yet! also why would he say 9 years ago this disease was considered all in patients heads, when the NIH, & CDC has recognized this as a organic disease since the 80’s. Am I missing something.
I watched the Dr. Oz segments and it was a pretty shallow and inaccurate explanation. But after so many years of being ignored completely, I suppose we can be grateful for whatever network time we can get. He made at least two misleading statements – 1. “We’ve all been there” as if normal fatigue or even exhaustion is at all comparable with ME/CFS symptoms and 2. that it is “treatable.” If only…
As a male with ME/CFS, there’s no way I could “tough it out.” At maybe 30% functionality and with almost constant daily symptoms and severe PEM, it’s not something that can be hidden or ignored.
I’m hoping that “Unrest” makes it as one of the five Oscar finalists. That would really give us some visibility. Thank you Jen Brea!