Expectations

Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film is here).

This much success was truly pie-in-the-sky dreaming four years ago. The film’s Kickstarter campaign had raised more than $200,000 in thirty days, four times Jen’s original goal. But even so, the possibility that this film would be anything more than a limited release art house film was hard to imagine.

And yet . . . here we are. Jen and her team imagined it. Then they strapped on some ass-kicking boots and made it happen. No amount of applause or gratitude will ever be enough to convey the magnitude of Jen’s achievement, and the potential this film has for people with ME.

And yet . . . we should make a little room in our minds and hearts for disappointment.

Perhaps you have asked your family and friends to watch the film on PBS and they won’t.

Perhaps you sent a copy of the DVD to your primary care doctor, and she shrugs and says she didn’t really like it.

Perhaps you’ve seen the film and gone to your doctor because you think you have ME, and your doctor blew you off.

As with all things in life, sometimes our unspoken expectations are not met and we struggle with the pain and anger we feel in our disappointment. Sometimes, we feel despair, or even get lost in that despair.

Apart from personal expectations, there are broader community expectations as well. CDC hosted a screening of Unrest and offered continuing education credits. Showings of the film around the country have engaged the public; showings in medical schools reach future doctors. The publicity, driven in particular by the PBS and Oscar stories, has raised the visibility of our disease to a level I have never seen before.

But this film – even if it actually wins an Oscar – this film will not be a magic turning point. This film cannot force a change in the training of healthcare professionals, or change the way disability benefits are determined. This film cannot provide the hundreds of millions of research dollars needed, recruit hundreds of researchers, or wipe away the stigma of this disease.

No film can do that.

Case in point: An Inconvenient Truth won an Oscar and brought climate change awareness to a new level. Yet climate change denial is going strong, including at the highest level of the US government. There is more public awareness of conservation, but that awareness has not translated into the actions and policies necessary to avert devastating climate change.

Awareness does not equal action, or even the political will to take action.

Case in point: in 2006, the CFIDS Association launched a multi-million dollar public awareness campaign paid for by CDC. I appeared in a story on NBC Nightly News. I gave more than a dozen interviews, most during a satellite media tour at the National Press Club. The Director of CDC and the Assistant Secretary of Health were among the speakers at a large press conference at the Press Club, and they said it was time to help us, and they said they would.

I cried that day. I cried because I thought this was our moment. I thought, After this we won’t go back to how things were. Everything changes now.

About six years later, Jen Brea would get sick and begin her journey of Unrest. Despite the interviews, the press, the public promises, we were and still are the #MillionsMissing.

I learned, eventually, that there is no Watershed Moment. There are a series of moments along a path that is (hopefully) more progress than backsliding. Science takes time. Politics take more time.

Case in point: HIV/AIDS. You are probably familiar with ACT UP and TAG, and the work that helped shift the federal government, in big and small ways, to invest in HIV/AIDS research and services. But the Trump administration recently fired the remaining members of the Presidential Advisory Council on HIV/AIDS, and there is no director of the Office of National AIDS Policy. Further changes contemplated by the administration could have a huge negative effect on people with HIV/AIDS and those who identify as LGBTQ.

Unrest is a powerful tool for us. But it will be impossible to achieve any systemic change without a great deal more work. I hope millions of people watch Unrest on PBS Monday, but I suspect that only a few individuals will join us Tuesday in seeking change.

I think of Unrest as an ax or wedge. Jen has driven this ax into the wood, but now we have to be the hammer that drives it home and actually splits the log.

Tell your family and friends about Unrest. Urge them to watch, either Monday, January 8th or via another way. Root Jen on when the Oscar nominations are announced on January 23rd, and let’s hope she gets her red carpet moment on March 4th.

Then pick up your hammer, and get back to work.

 

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27 Responses to Expectations

  1. Kathryn says:

    I thought PBS was showing the film beginning Jan 8th. That’s what I’ve told all my friends and family.

  2. Carollynn says:

    Thank you so much Jennie. While I’m over the moon about Unrest’s potential, I’m also really concerned about people in our community who may have their hopes dashed by insensitive or unresponsive family, friends, physicians. Please everyone turn to our community if you feel misunderstood, abandoned, more isolated or alone. And if you are in need of help or hope please call 1-800-442-hope (4673).

    • Jennie Spotila says:

      Thanks for this point, Carollynn. I can add that there is concrete information about crisis and suicide in a guest post here:

      http://occupyme.net/2017/11/05/crisis-and-suicide/

      Anyone in crisis (you do NOT have to be contemplating suicide) can call the National Suicide Prevention Hotline at 1-800-273-8255 or text START to the Crisis Text Line: 741-741.

  3. Jule says:

    Oh Jennie, this is so true. I cried because I realized how much you and others like you have gone through just watch it all go up in smoke and feel like you must begin anew. You must be so weary of tempering expectations. We all do it daily. When we can get out of bed, everyone says, how wonderful, you must be feeling better. And when we end up devastated for the following weeks, people become frustrated, can’t understand why we don’t continue to progress. It is mindnumbing and exasperating to deal with.
    Hugs and thanks for all you do!

    • Jennie Spotila says:

      Wow, yes, the constant tempering of expectations just in our daily lives is enough to grind us down. I had not thought about it that way before!

  4. Bazia says:

    Thanks for sharing this, all your advocacy and energy. We are in strange times! The philosophy of having no expectations is something I practice. It is something that is a necessity in my life. As someone mentioned earlier trying not to get ground down is truely an Olympic sport, I can relate to, on my 17 year journey.
    The film is another one of those gems!
    Grateful for all who speak out for those of us unable!

  5. bobbi ausubel says:

    Hi, Your article is so well written, you are such a skilled writer and researcher and advocate. Thanks. You often make me cry as I read your writings. Yes, we will go on and be the hammer!

  6. seesir says:

    Thanks Jennie for all your years of devotion to our cause. So glad to hear that 200,000 has been contributed. This disorder that we have is like a lot of things that take years for progress, unfortunately. As distressful as it is, we cannot stop now. Soon, we hope, there will be a ‘break through’ in cause and treatment. And, informing the medical community, the public and those with the purse strings has to be the focus right now….wishing I had more strength/funds to contribute. But, doing a small part by staying informed is as much as many of us can do.

  7. Cindy Downey says:

    Hi Jennie,

    Thank you once again for your insightful writing. It is realistic to point out that other campaigns have failed. Whatever they are for. Disheartening to look at the big picture – you have provided the tough love message, which people need, but I know you are also saying we can’t lose hope. “Unrest”, is a marvelous tool the ME community can use to bring awareness to many. Some I know who have seen it say they had no idea ME (CFS) is so bad.

    I’ve had ME for over 30 years. I have copies of Canadian government funded workshops from 1989, and 1991. Hopes then, that things would improve. Hopes that the 2003 Canadian Consensus Criteria would change things. Ultimately, despite government involvement, this document was not distributed to physicians.

    I think finally, the efforts are not so disparate. More government health authorities are getting on board. The ME community has greatly helped to engineer this. “Unrest” is helping to do this. Bravo to Jen, Omar, and their team! Bravo to everyone in the ME community!

    A few suggestions for potential contacts about watching “Unrest”: food banks, community resource centres, and municipal councils. The 2014 Canadian Community Health Survey, under the auspices of Statistics Canada, reported 26.1% of Canadians with ME are food insecure. Thank you to Julie Rehmeyer for citing this statistic in her recent Ms.Magazine article. Other countries will likely have very similar numbers.

    Using the Canadian 2014 ME prevalence rate of 1.4% for citizens age 12+, a conservative estimate for people in my area with ME is from 2,000 to 3,000. (Canada now has a 1.9% ME prevalence for age 12+). Even I was surprised to see we have between 2,000 and 3,000 local citizens with ME, with anywhere from about 500 to 800 experiencing food insecurity. We know the overall numbers; taking it down to the local level gives us an easier, if still jaw-dropping picture.

    Another way to get the message across: this is flu season. Maybe remind those nearest and dearest to you, or not so near and dear, that they can experience post-exertional malaise for themselves when they have a severe flu. Trying to do minor chores, with a fever, fatigue, weakness, dizziness, a headache etc. with the flu, gives those without ME, some small sense of what living with ME for decades can be like.

    One last idea: ask your local library to order copies of “Unrest”.

    Thank you very much Jennie for your wonderful writing, and your ongoing encouragement.

  8. Rivka says:

    Exactly right. Unrest is the most powerful tool our community has ever had. Thank goodness we now have it. But we still need to do the work.

  9. Sharon Rousseau says:

    Thanks Jennie and to all of you with the great comments. Bateman’s education is helping too. What discipline is the best fit for ME. Taking into account Canada is now with Musculoskeletal and NINDS in the States. Neurology is not an appropriate choice because they never adopted us, leading to more neglect.
    Would it be immunology or metabolic or internist with some extra neurology training?

  10. Nancy Blake says:

    You are right. And the problem is that we have an extremely powerful, well-embedded group of psychiatrists/insurers/politicians/media people who are very actively and powerfully pursuing their own agenda, which has got ME labelled ‘functional’ with neurologists, and is making use of ‘medically unexplained symptoms’ in the UK to brush ME/CFS under the psychiatric carpet. It isn’t just ignorance, or not enough science, or not enough evidence/well-reasoned arguments…it is a systematic drive to keep this illness in the hands of psychiatry.

    My own response is not to cry ‘look how sick we are’, or ‘look at the science’, but to start talking about misallocation of funds…if money talks, let’s take that angle.

    http://www.positivehealth.com/article/cfs-me/medically-unexplained-symptoms-diverting-5-year-funding-from-mental-health

    I think that if every doctor knew to treat signs of ME as a signal to put the patient to bed, and everyone knew that if you had ME it is important to go to bed, from the first suspicion, (this isn’t anti-medicine, it is what Ramsay and Acheson insisted gave us our best chance) then we would save a lot of money, save the insurers a lot of money, it would be cheaper for everyone if we took this first preventive measure.

    http://www.nhsmanagers.net/guest-editorials/a-radical-care-pathway-for-mecfs/

    Then those of us who could get better would, and all the money saved could be used for proper treatment (whatever that may turn out to be) and for the medical research that will give us the answers.

    At the moment, the diagnostic practice of waiting six months, the patient’s very natural response of going to doctor after doctor to get a diagnosis and treatment, and the treatments offered all effectively insure that you will get sicker instead of better.

    We are in a sense on our own, better off on our own. Let’s save our own energy and money, and use the saved money to support proper medical research.

  11. Nancy Blake says:

    Does anyone else find it odd that since ME/CFS can be characterised, measured and monitored by standard exercise physiological techniques we aren’t harnessing the power of heart rate monitors? It appears that our physiological abnormalities are similar to those of over trained athletes and standard apps such as HRV4Training and others can be used to enable us to stay within our energy envelopes yet only a few early adopter are using these techniques. Why is this?

    • Angela says:

      Many of us are heart rate monitoring!

    • Michael says:

      You make a great point Nancy. My doctor (from the Stanford CFS clinic) recommends keeping my heart rate no higher than 10bpm over resting. I think a heart rate monitor would be really useful for this. I’m looking at an apple watch for this. What REALLY would be useful would be an IOS app for CFS to use the heartrate monitor and distance metrics to warn people with CFS when they’re pushing to hard and to pinpoint when we push ourselves to crash.
      -Michael
      https://cfsishell.com

  12. Michael says:

    I love that this movie exists, and i think you’re exactly on point about making room for disappointment. I have low expectations about getting anyone I’m close to to watch this movie. I don’t think this is going to “shock the world”, but it really is a significant step to giving our community a voice. As will all things about this illness. Its important to keep your expectations in check.

    BTW, I use the same theme for my blog 🙂
    -Michael
    https://cfsishell.com

  13. geoffrey keith brown says:

    this unrest film is useful but does not go anywhere near describing severe M.E g93.3 as someone that has had open heart surgery to replace a virally deceased Aorta valve and brain damage shown on MRI to be also severe [from a man in charge of 2 u/g coal mines environmental monitoring to a blithering idiot at worst, I use Grammarly to even write this comment excuse me if I doubt the people involved even know what a severe case of this entro viral autoimmune illness is .Commercial exploitation of M.E is the norm in today’s medical society.Jea has never had this illness it is so very obvious nor have the people that are raving about unrest.but at least it suggests many positive things of that I am grateful

  14. geoffrey keith brown says:

    this is my name and email failure to publish will result in my comment being posted thru out the M.E world

  15. Kathy d. says:

    Thanks, Jennie. Good post.

    I agree that “Unrest” is a contribution, but that advocacy has to continue and grow. The film won’t solve the crisis and lack of funding for research by itself. Sufferers, advocates, relatives, doctors, researchers and others have to keep on fighting.

    It’s terrible that the advisory panel on HIV and AIDS was disbanded.

    And many politicians in Washington have their eyes on cutting Social Security, Medicare and Medicaid, which will harm many ME/CFS sufferers.

  16. Chris Heppner says:

    Jennie, I take your point–even this movie cannot change the world overnight–but I was even more impressed than I expected to be–light on the science side, probably wisely since it is still decidedly undecided–but very effective in showing the human impact of the disease, and the unexpected specificity of the Karina episode came across with real power–what is wrong with those usually sensible Danes? The people running that Parliamentary committee hearing reminded me of the stern ministers in Dreyer’s great movie, “Day of Wrath.” Maybe that stern Calvinism still operates below all that apparent modern greenery. The movie was often lyrical, often sad, sometimes tragic, and from time to time playfully comic–our hopeful/hopeless quest for the supplement that will provide a fix, the sad absurdity of the mould episode… I thought it was really a wonderful multi-stranded mix. And the story of J and O running through it as the sustaining thread.

    But I had for some reason expected an interview with you–did I simply not recognize you? Though it was great to see Paul Cheney young and old, and Nancy Klimas generous as always–but where were you? There was a Jennifer, but no interview, and I could not recognize you…if you are there, around what timing?

    Anyway, many thanks to you and the other Jen for all the great work you are doing on our behalf.

    • Jennie Spotila says:

      Great comments, Chris! I was interviewed for the film, and I was wearing a microphone at the P2P meeting. None of that footage made it into the film, but I have a very brief cameo about 30 minutes in, if I recall correctly. It’s just a brief shot of Wilhelmina Jenkins and I walking into the hotel after the P2P meeting.

      • Laurie P says:

        Maybe some of the extra footage can be used in the future. I wonder how much exists.

      • Chris Heppner says:

        Jennie, found you at 24minutes. It is a curiously short and disconnected shot–maybe Jen felt guilty about cutting your P2P thing. I do like the idea proposed that sequences cut from the film be made available somewhere. Maybe Jen felt she wanted most of the protest material to be as it were rendered visible in the suffering bodies, the shoes, the Karina episode, rather than in articulate protesting voices?

  17. Janelle says:

    Insightful post, Jennie. There are more and more things that are helping, but it’s still an uphill road.
    I do think this film and the great skills of Action for ME are helping with awareness. I am so impressed with all the patients who are working to make things better.

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