There are videos and there are VIDEOS. This is a VIDEO.… It’s a video that seeks to (and should be) a film to be more accurate. All it needs is a little help
The Kickstarter Campaign to Create the Canary in the Coal Mine Film has begun.
The 10 minute preview video is sharp, smart and creative, and it moves really well. Almost all the video’s on ME/CFS work for me – they tug at my heartstrings; but this is something else entirely. This video works on multiple levels; intellectually emotionally, and cinematically.
Films can get an enormous amount of attention. I have no doubt this one would go viral; it’s that good.
Created by a Harvard Ph.D student, Jennifer Brea, in collaboration with independent film maker, Kiran Chitanvis, this film will use the stories of six ME/CFS patients, and numerous ME/CFS experts to help document the vicissitudes ME/CFS patients face, and the horribly flawed approach to this disease the medical community has taken.
Life Interrupted
Harvard Ph.D. student Jennifer Brea’s life got turned upside by ME/CFS; now she’s telling the world about it.
Jennifer Brea is one of the six. A Ph.D student at Harvard, engaged to be married, with a bright future ahead, Jennifer found, one day, that she couldn’t write her name in her checkbook. Eventually she had trouble sitting upright in a wheelchair. Despite her past accomplishments (Princeton grad, TED Fellow, print journalist in Bejing and Africa) her doctors were sure her illness was psychosomatic.
Those doctors had to reject everything about what they knew of Jennifer’s past life in order to conclude that, out of the blue, she’s had some sort of mental breakdown. I know of a former president of a major corporation – a woman- who faced the same problem…
Mary Schweitzer, a Ph.D herself, encountered the same thing, stating in the video
“Except for doctors nobody doubted I was really sick” Mary Schweitzer
Leaving Dr. Klimas to get to the guts of the matter…
“We just don’t have doctors going to guys saying if you’d change the color of your hair you’d feel better…”Dr. Nancy Klimas
and
“The NIH spends $16 million dollars on male pattern baldness and $3 million dollars on chronic fatigue syndrome” Dr. Nancy Klimas
These are the kind of hard-hitting and memorable quotes that decorate this video preview.
Watch the Canary in a Coal Mine Video
It’s already more powerful of a statement about ME/CFS than I’ve seen before.
Which brings up the question – What might a film be like? I’d love to find out.
I’m so behind this film it’s ridiculous…
Kickstarter Campaign – The Kickstarter Campaign lasts one month; if they raise the $50,000 they get to make the film; if they don’t raise it all the money gets returned – that’s the way Kickstarter works. Buyer beware, though….If you watch it you will contribute. I did.
Let’s make this film a reality..
[vimeo]Donate to the Film Here.
You’re so right. This is very impressive. Just this appeal for help is expertly done.
When I saw the title of this film, if reminded me of a book that I read from a doctor in New York. It talks about the canary and how sensitive it is. The miners took the bird down into the mine to test the air. If the air was bad, the bird died. The men knew to get out of that area. He compared some people to the canary. Some are more sensitive to the environment, chemicals, illness than others. He felt like these people are the ones that are more tuned in to what is really here and affecting others. He felt that because of this we tend to be more “sick” because we notice what these things are doing to us. I have a friend from CO that went to this man and did his treatment. He went from having CFS/FMS to climbing 14er’s (mountain climbing) on an near weekend basis. He still has periods of tiredness, but nothing like he did before. He had to change his diet and took lots of Vit C. I’ll see if I can find the title of that book.
I agree that this probably is true of more than just those in the CFS/ME community. I think some of the other illnesses would fall into this category. I appreciate that more attention is being drawn to this. As I think so much of the things we are dealing with are interconnected.
Issie
An amazing response! $26,000 on the second day! More than halfway there….:)
Whoops – it’s up to $27,227…..20 minutes later…. 🙂
COOOOOL!!!! She’s going to get the movie made and will probably make more money than is needed.
Issie
The CDC (in the past) didn’t spend 3 million dollars on CFS. It STOLE the $3 million and it used for something else. Spent zip-nothing-nada on CFS. Shameful episode.
Always have wondered . . . if they had used the money where it was supposed to be used, would things have been any different now? Would doctors have been believing stories from patients — instead of continuing to hand out that “all in your head” story?
That would have been the smallest good change that might have happened.
Or maybe they could have had some kind of breakthrough moment; wouldn’t that have been nice? Maybe it wouldn’t be necessary, all these years later, to raise private money to pay for what government money should already have been doing, long since.
Actually, I think they took $12 million dollars Congress told them to spend in CFS and spent it elsewhere – and then got caught. I believe it cost the director of the CDC his jog. That was in the late 1990’s, I think. The CDC has rarely been cutting-edge on anything ME/CFS. They actually do have a big budget relative to everyone else but little really comes out of that program…
Cort,
I really believe that since the change of the CFS director, now Dr.Beth Unger, who is a true scientist, I believe there is a huge change of thinking at CDC. The current CDC study headed up by Dr. Andy Kolgelnik, which includes Drs. such as Klimas,Peterson, Bateman and our other true experts will bring some major light to this illness. It will sort out what Reeves empirical definition clouded in the true illness. Also having Dr. Ian Lipkin involved is a major boost to our patient population.
I am excited about what I just saw in the Movie Trailer, Being an Ex-Coal Miner, the title was enough to get me to donate.
Best to All,
Bob Miller
I love: “Those doctors had to reject everything about what they knew of Jennifer’s past life in order to conclude that, out of the blue, she’s had some sort of mental breakdown.” This one beautiful sentence sums up so many of our experiences, sometimes years of experiences. Arrogance plus ignorance is a deadly combination and nowhere is it more frightening than in the medical community. Thank goodness there are doctors who exhibit neither.
Have happily supported the project. The Blue Ribbon by Ryan Prior and Nicole Castillo is another gem. I am always moved by the greatness in our community.
It’s incredible is it not? I was not kidding about that other woman – she was a President of a major corporation in the US before she got sick, and she was treated just like Jennie was. The density of the male brain just amazes me at times…
In Sweden, many (perhaps most even) of the most supportive and well-educated physician advocates are male. Unfortunately, many *female* professionals – particularly a certain history professor – have advocated that ME is a fake illness that male doctors assign to female patients because male doctors believe women are weak. This theory is posted on a number of Swedish medical sites and repeated in student literature. 🙁
Please do the translation or subtitles in different languages, I’m Italian and will show it to all my friends and relatives and doctors who do not believe that I am seriously ill. I think you are a fantastic people, this site is fantastic and also we are all SUPERFANTASTICI why we fight every day against this devastating disease. God protect all of us and our loved ones.
I wish God had me saved from getting this terrible disease 🙂
On the third day of the drive they’re up to $35,000 donated. Wow……$15K to go and they get to use it all and we get a great film 🙂
They need 150K-200K to do a thearature rollout or else it will be an online only film. Either way it is good for the community but I really hope someone with deep pockets steps in, the community needs it.
Agreed….That would be really something to see it at Sundance…:)
Up to $38,600 now
Cort,
I’m confused, this woman is clearly setting out to make a film about ME. Which if you read her interview on Phoenix Rising she believes to be a seperate disease than CFS. This film, depending on how it’s presented- which the clip gives no indication- could actually be trouble for CFS- which she belittles in her interview!
Have you spoken to her? People with “ME” I’m sure you know are almost elitist about their disease wherein CFS is spoken like we just need better tennis shoes by comparison to the severity of their disease.
AS she said she went from CFS to CFS/ME to ME- I’m more skeptical than willing.
Then she goes on to talk about being a diagnostician??????
Greg Cutler DVM
Hi,
I can see where the about the interview with the difference between CFS and ME would be of concern. I have been bedridden for a year, disabled many more, very ill. If the doctor doesn’t believe in let alone know how to diagnose ME how are those of us with a diagnosis of CFS going to fare? Will the film help us? It could become another problem of how you get treated depending on what the doctor decides your label will be. I can assure you we who get the CFS label are not malingerers. Although the title of the disease sounds like it.
We really are at the mercy of good or bad diagnosis from practitioners.
God bless
Dawnx
My view is that as ME, PVFS and chronic “fatigue” are all conflated into CFS this has become a waste-basket label, with 40% of those afforded itsubsequently being shown to have other diagnoses (J R Coll Physicians Edinb,2010:40(4):304-307). I felt this is what he director was trying to get across. Obviously many people with the diagnosis of CFS have the illness Ramsey categorised in the 1950’s and accepted by WHO.
I am sorry if some people think some pwme look down on those with a CFS diagnosis.I really don’t think this is about people with ME thinking their illness is more worthy than CFS, as many with the diagnosis of CFS, especially as my understanding is that in America are most patients are given that name, have the same illness as someone else given the diagnosis of ME. The point is some of the criteria used are so broad as to diagnose a wide set of people who in all probability do not have the same condition causing many problems.
I think this film looks great and have made a small pledge 🙂
“Elitist”???!!! If I had to pick anything in life about which to be “Elitist”, believe me, it would not be ME. Nobody gets this sick by choice, and it’s worth bearing in mind that the term ‘CFS’ has been a major factor in the denigration of people who are genuinely ill. That term has been a convenient handle both for those who wish to take away the validity of ME; and for those who just wish to malinger and find ‘CFS’ a convenient handle.(So you’re tired all the time, I’m tired too! Gee, maybe I also have CFS ! [clearly not understanding the difference between a bad night’s sleep and the genuine bone-crushing exhaustion of ‘CFS’/ME] ). It’s this very blurring of the lines between these names that has caused such confusion and because of that, impacted the credibility of this illness. Remember the whole “Yuppie Flu” debacle??
Having vented all that (;>) I am so awed by this project – people need to see the other side of ME – not the public face we all try to put forward, but the ‘flat out-in pain-can barely talk -battle to even move’ face of this illness. I don’t have the guts to show that face to anyone; those who are doing this are so brave…I commend you and wish you every success with this project.
remind me in a few weeks I will make a small donation then……. I have had it since 2000 ty
They’re at $48,000 – amazing…..who knew?
Thank you. Not able to support with cash, at this time, but will spread the word.
Respectfully, the Canary in a Coal Mine video link does not work.
Thanks for letting us know. When you clicked on the video it didn’t play or was it the Donate link?
http://www.kickstarter.com/projects/959776320/canary-in-a-coal-mine
Donations stand at $100,122 right now !!! So exciting. Hope is a really good feeling. I can never ever thank properly those who give in the effort to make this film a reality.
Wow….$100K —what can you say but ‘Wow!’