This is our moment – Jennifer Brea
An extroardinary response from the ME/CFS community enabled the backers of the ‘Canary in a Coal Mine’ to meet their campaign in goal ($50,000) in just three days. That response knocked Jennifer Brea over – literally (see below) – but it exposed a flaw in her’s and Kiran’s dream.
They Aimed Too Low…
They didn’t realize how much this community yearns to see their story artfully displayed up on the big screen.
They’re rectifying that mistake…
Health Rising’s Quickie Summer Donation Drive is On!The Kickstarter campaign is now about producing the entire budget ($200,000) for the first full length film in ME/CFS history. (Can you see it in the documentary slot at the Oscar’s? With these production values, I can…..Can you imagine the impact that would make?).
Making History
It’s also about generating the most donors (6709) in the history of documentary film campaigns on Kickstarter.
I know this community can do it. We rally the troops. We win contests. Nobody needs a film like this more than we do. This film will help erase stereotypes, acquaint people with the reality of ME/CFS and inspire them to support us.
No more ‘yuppie flu’. No more “Oh, I’m tired too”. No more doctors rolling their eyes and handing out antidepressants. This film is about getting rid of those conversations ….It’ll be a shot to the solar plexus of the public’s wrong ideas about ME/CFS.
Check out independent film maker, Kiran Chitanvis (standing) and Jennifer Brea (creator, person with ME/CFS) horizontal, on “Their Big Crazy Vision”
Their ‘Big Crazy Vision”
They’ve raised $82,000. They’re almost halfway to their goal with 3/4’s of the campaign ahead….I’m donating again…….are you?
Spread the word……
The Kickstarter Campaign Has Only Just Begun…..
Ask Everyone You Know to Give….
Donate Here
As a severe ME sufferer in the UK since 1991,I say”God bless you all for doing this”.I`m typing this from my bed and want to think that some day even though I am 60,I may re-enter the real world.
This film would go some way to finishing the work which Tom Hennessy sadly had to take his leave from.
As you folks in America sang”We Shall Overcome”.
Again,God bless you.
For the first time in 28 years, I feel REAL! My son never had a mother. My family was destroyed by my illness. We are ALL still mopping up blood all around us from what this disease caused. As I lay here, I am still Holding Shreds of a lifetime gone wrong.
Thank you!
Again, my question is in America, where we are currently undergoing tremendous turmoil about just the terminology of CFS, is it appropriate to be “self-diagnosing” yourself and making the distinction that you have “ME” when the ICD-9 Diagnosis does not even exist. She surely doesn’t have disability under such a diagnosis!
I’m afraid that making this distinction will just lead to further problems. She has already stated that “CFS is just a diagnosis of variable fatigue” which is clearly inappropriate. Most people with ME look down their long noses at people with CFS.
The short video gives no clear idea of the scope of her bias.
Dr Gregory G Cutler
Do you think the public will get the message that ME/CFS is a serious disease that has been neglected?
I’m worried that she concentrates on the disease being ME and that’s the focus of the Movie!
Good point.
As someone who watches search engines in the internet – ME is pretty non-existent; chronic fatigue syndrome, on the other hand – is well known. (That’s why I lead with chronic fatigue syndrome in the title and the first part of the blog). As bad as the name is, that’s how the public knows this disease. If this movie is going to have the broadest appeal – it needs to be in there.
I agree! Thanks for pointing that out.
I disagree. Somebody, somewhere has to make distinctions between the mess the CDC has created “CFS” versus “ME”.
The “public” (i.e. those leaving comments on Yahoo) will see “CFS” and be like “what a bunch of losers” and then look for the next cat on the skateboard video. I can’t imagine they are the “target” audience. This is a long way from playing at the local multi-plex.
Interjecting that into the conversation would be a huge mistake in my opinion. I think that would be turnoff for the public.
Somebody may or may not need to make distinctions between the two – but this film surely doesn’t. (How can you draw a clear distinction when there are NO studies of ‘ME’? You have no independent validation of what ‘ME’ is) Trying to draw that distinction could open a hornet’s nest of problems which could undermine the project. Best to keep it simple in my opinion.
I think the film will alter the preconceived opinions of anyone who watches it. If you’re going to change the preconceived opinions about ME/CFS or chronic fatigue syndrome then you have to call it that.
If you’re going to introduce people to ME – that’s another effort entirely. If the film is about ME – then affecting the public’s stance on ME/CFS – is going to be more difficult. First you have to introduce the term – which few have heard of – then translate it into ME/CFS…and then into chronic fatigue syndrome. Better to just stick with chronic fatigue syndrome – if you want to reach the most people possible. I sincerely hope they introduce it as chronic fatigue syndrome – note that it’s also called ME – and then get into the stories.
I hope you’re right, they do have a wing that’s on the web making a big deal about ME being a different and more severe disease, and being adamant that it be kept distinct from CFS.
Greg
When I post I always say CFS/ME or CFS, otherwise known as ME, as well. People in North America don’t know the term ME, yet. It’s just terrible that we have this confusion and it’s causing derision among people with the same disease but labelled with different diagnostic terms. It almost sounds like a divide and concur strategy but I don’t really believe that. It’s just so angering.
“She has already stated that “CFS is just a diagnosis of variable fatigue” which is clearly inappropriate.”
Why is this inappropriate? Is this not reality? The current criteria is essentially capturing everybody that has not been feeling well for longer 6 months with no “obvious” other condition.
The CDC has consistently referred to “CFS” and other “fatiguing” conditions. “CFS” for the last 30 years has been only about “fatigue”. Do you disagree?
This is particularly galling to those that don’t have “fatigue” as the primary issue.
If I am doing a study on brain damage in football players but include a majority of badminton participants most people would recognize that any conclusions are going to be useless.
But for some reason in the “CFS” world it’s completely acceptable to mix and match populations that have nothing in common except that they have been “ill” longer than 6 months.
In fact, it’s not just acceptable but some hand wringers seem to think that it will cause more problems if distinctions are made between those who are tired and those who have objective neurological, immunological issues.
As if….!!!
These are all things to think about for the final product…I think the film as it follows the six people will surely illuminate their wide variety of symptoms -that’s the main story – and the descriptive parts should be as tight as possible as well.
Incorrect, CFS is defined by having Fatigue that is not explained by any other medical disease- the problem is many doctors now don’t know how to follow an algorithm or work up a case adequately to rule out heart disease, thyroid disease, depression etc.,.
That being said, there must then be 4 of 6 other criteria met to fulfill the diagnosis. It is not just the Fatigue!
Good point.
Again, if this film is about anything it’s about the misconceptions that allow doctors and the medical community to treat ME/CFS as if it was just fatigue…just being tired….It will inevitably highlight all these other symptoms…….
I hope this discussion is not putting people off from donating. See the latest clip and see the first preview – and you’ll be convinced….
I’d like to know why the CDC dropped the diagnostic code for myalgic encephalomyelitis (ME), a disease recognized by the World Health Organization and the rest of the world. Why did this happen? Erasing a name and a diagnostic code does not get rid of the disease. They need to be called on it, and this disease needs to be restored to its proper place in the ICD codes of the United States.
That happened to my knowledge decades ago. I believe they said they did not feel that the episodes in Incline Village and probably elsewhere in the US were similar to some of the ME outbreaks described in the literature. To some degree they were right – the outbreaks were quite variable – and some of the symptoms highlighted in some other outbreaks – did not show up much in Incline.
That difference faded as the emphasis shifted away from the outbreaks.
Unfortunately, they went with the wrong name.
What about shifting right now to the present reality in our world. ME/CFS as described in the CCC and ME as defined in the International Consensus Criteria is where the focus should be. Patients around the world recognize themselves in these criteria and identify with them. This is their reality and their experience. This is the disease they want acknowledged and not swept under the carpet once again in a mixture of “fatiguing” illnesses. This is what this fight is all about. This is what the DHHS, NIH and CDC must get through their thick bureaucratic heads. This is NOT fatigue. They need to acknowledge their past mistakes and change direction in their thinking if any progress ever is going to be made in tackling this complex multi-systemic disease. And, if any help is ever going to be received by those whose lives have been turned upside-down by ME/CFS or ME, whichever you prefer.
I have backed the film.i might up my pledge.i think people should tell Jen any concerns they have.the whole point is to get this chronic disease story into the limelight in a way that affects people.i see this illness as a spectrum illness with varying degrees of severity.Those with M.E that look down on people with supposed CFS are in affect doing what the whole world has done to M.E. Its just makes it so much more hypocritical and judgemental.
Le\t’s not get sidetracked…
This film will open eyes, demolish wrong conceptions and bring visibility to this disorder in the way no other forms can. Please support his project 🙂
I grew up in Nevada (within 200 miles of Incline) in the 1970’s. By the late 1980’s I had CFS. I was officially diagnosed in 2008 with Fibromyalgia. With verbal’s from my doctors as “yeah you probably do have CFS but you don’t want that on your record”. Since that first day that I vividly remember being so sick (with shooting pain down my arm, shortness of breathe, so many aches and pains all over-thought it was a heart attack) my life has been gone. My daughter, now 28, basically raised herself. My husband now of 15 years, still doesn’t get my pain. I remember my mother telling me to pull myself up “by my bootstraps”. All the medical tests that followed that first day, the only thing that could be found – a very minuet micro valve prolapse, that has never bothered me. But I’ve lived through 25 years of health hell. I hurt each and every day. I’ve gained weight, I’m so tired I could sleep through anything, except when I lay down I cant sleep because I hurt, can’t get comfortable, twitch or my brain decides to try and wake up and runs from on thought to another without landing on anything. I’ve had some very good times in there, but I pay dearly for them. I’ve learned to live with this, what I can and can’t do, more can’t than can.
So anyone that can get anyone the listen and help the other people out there just like me, may you have a blessing from each and everyone of us.
http://blog.ted.com/2013/10/25/illuminating-an-illness-without-end-fellows-friday-with-jennifer-brea/
https://www.facebook.com/canaryfilm
I am excited about this film. It is great that donating $1 ( or more of course) can help this become a bigger media story and give it even more credibility. By breaking records such as the record for number of donors, we are saying to the world “Listen to us. We will not be silenced. We will stand up for ourselves whatever it takes! We will stand for our loved ones who suffer. We will stand for those who will become sick. We will not except the status quo.”
I donated in honor of Karina Hansen. (see Justice for Karina Hansen on facebook for more details) Her birthday is coming up on November 7 . As things stand, she will turn 25 being held in a hospital against her will because of willful ignorance of this illness by doctors in charge of her care. I thought donating to this film in her honor was the best choice of birthday gift in my power to give. For everyone that can spare that $1 (or more), let’s donate in someone’s honor. Yours, a loves one’s ones, Karina’s. Or possibly in memory of those we have lost.
We seldom have a chance to make a difference with $1 in so many ways. It will help fund the film, it will help break a record (fingers crossed), and you can honor someone by choosing to donate because of them. So many chances for media exposure and opening up a dialogue in that $1 donation.
🙂
Per the fundraiser for’ Canary in a Coal Mine’, the film about the realities of Myalgic Encephalomyelitis/CFIDS/CFS: I want to see this movie made. Yet…I myself have no money. So I can only express my BIG thanks to all who are contributing. For me, as for so many, the idea that of the film is deeply moving, gratifying, evocative, emotional.
I know I will never be well again. I doubt I will ever even have adequate symptom amelioration. I’ve lost all of who I was before I became ill with CFIDS/Myalgic Encephalomyelitis/whatever this is. I was a journalist at the time I was stricken down. I’d just won a state medical writing award. Oddly enough, the ‘award winning’ story was about Lyme Disease, its complexities, the controversy, confusion surrounding it. Those of you who know the saga of the disease we now call M.E. or CFIDS, will know that it was curious, ironic as well as catastrophic for me to be felled a year later with what many at the time had thought a post-infectious malaise resulting from Lyme. One February morning in 1993 @ 11:30 a.m., I said, “I have to sit down.” I never got up again. I never wrote again. I’d studied flute for ten years with the principal flutist of a large metro-area symphony. I never played flute again. This illness is formidable. It steals identities. In my case it has taken everything. Patients ill with this suffer unimaginably. So, when I say ‘thanks’ to those who donate, I mean it with all my heart. I want to live to see this film made, to watch the world react. I want validation. And, yes, those making this possible..are my angels.
Please share the link widely, and donate a dollar if you’ve one to spare.
http://j.mp/canarykickstarter
I was diagnosed with CFS/FM about 8 years ago, although I’ve been feeling sick for around 30 years, I consider myself a very strong women. I try to live my life to the best of my ability, every day is a gift. I would say that in a matter of 30 years or so I have felt like I have a flu or what I call my good days I feel like I have a cold. I try to keep my muscles strong by either swimming or walking, and that takes all my strength. The flu systems are REAL, soar throat, soar limp nods, achy all over, weak, to tired to think. So here it is, MEDICAL MARJUIANA, I make edibles, I eat a cookie at night and sleep all night, even though their has only been 2 short incidents in the past 30 years or so that I’ve felt like I’ve slept,one lasted for about a minute and the other about 30 seconds. At times when I didn’t have cookies to eat I would wake up off and on all night long, adding injury to insult, I would be so exhausted that I would have to be in bed all day. Their are times during the day that it hurts to get out of bed, on those days I will eat a cookie and 1 hour latter I can go for a walk or do laundry, it actually gives me a little energy. It breaks my heart to know that children stuffer with this disease, can you imagine being a child and waking up sick every day with a FLU, and again the systems are real. I’ve heard of medical marijuana being used for children with seizures that are now living their life and being able to be a kid again. The strain is called Charlottes Web which has a higher content of CBD, please look this up. I hope and pray that research can and will be done on this subject. Even though I take sertraline in the morning and amitriptyline at night, I have not gone up on my medicine in 2 years, I still have bad bouts where I’m off my feet and in bed, I have not taken pain meds since I started using medical marijuana. I feel without a doubt that this has giving me back some of my life. I believe marijuana is the most versatile plant we have on the face of this earth and God gave this to us to make our lives better, not only in medicine but fuel, omegas, clothes, paper, no pesticides needed. Please, most people have had a flu in their life time, again can you imagine living every day of your life a flu. I believe with enough research we can make people living with ME/CFS/FM better.
Many Thanks for Your Time and Consideration in this matter,
Sincerely,
Patricia
I agree Patricia – medical marijuana works….I hope it becomes more readily available.