Canaries didn’t warn coal miners that the air was bad by dying. It was when they stopped singing that miners knew the air was getting foul. Jen Brea may be sick. but she’s singing loud and clear about chronic fatigue syndrome in her film project. In an empathetic video interview with Al Jazeera, , she just sang again.
In a piece cleverly titled “Chronic fatigue syndrome activists launch ‘uprising’ from their beds” Al Jazeera recently featured two video interviews with Jen Brea of the ‘Canary in a Coal Mine’ film project.
Not only were the interviews moving, but Al Jazeera created a short, but good article on chronic fatigue syndrome, quickly noting how scare funding is, that there are no approved treatments, and bringing in Dr. Nancy Klimas to state
“It’s been a very, very small budget …I had looked up male pattern baldness … $18 million for male pattern baldness [but only] $3 million for chronic fatigue syndrome, an illness that affects 1 million people in this country that has at least 25 percent of them out of work and on disability.”
Jen’s husband, Wasow, strikingly juxtaposed life before and after ME/CFS when he described a vital young woman “in constant motion”, who “took the world on with both hands”, who now, three years after becoming ill, is still taking on the world, but from her bed mostly, and who usually leaves the house in a wheelchair.
With the media coverage the Canary in a Coal Mine effort has gotten, the effort is already altering the public’s perception of ME/CFS.
Called the ‘most ambitious American television news channel’ effort since Fox News, Al Jazeera features 14 hours of news a day, documentaries and fewer commercials than any other news channel. The International Academy of Arts and Sciences voted it one of the five best news web sites. Al Jazeera has said its focus on ‘serious journalism’ will allow it to stand out.
Jen Brea on ME/CFS on Al Jazeera Pt. I
Jen Brea on ME/CFS on Al Jazeera, Part II
I believe most doctors are now aware that me/cfs is a biological disease, but don’t have the time to work with patients that won’t significantly improve, accordingly.
Plus, it hasn’t been proven that me/cfs isn’t a form of Lyme disease.
I agree. Lyme and associated disease testing is so miserably inaccurate. I wish the major researchers for ME/CFS, Lyme and Fibro (if there are Fibro researchers) would work together. It seems like we are all fighting the same invisible enemy.
Treating a protozoa (FL1953) and co-infection associated with Lyme (Ehrlichia) is definitely helping me. I have HyperPOTS too and with treatment (that breaks down biofilm and addresses the autimmune system) and diet change, I have more good days than bad ones. I told someone today, I feel like I’m a teenager again. Definite improvements in my case. It makes one question if this could be the cause of so many of the illnesses that seem so related and/or connected.
Issie.
Were there supposed to be 2 different videos? I am not seeing part one. Thanks.
Oh lordy, I put the second one in twice. I actually haven’t seen either because my computer crashes when I try to fun a video (lol), but I should have checked. The first part is up now. 🙂
good to see you stuff up cort sometimes I wonder when you are firing if you really still have this thing we fell ill with so long ago cheers geoff
I’m just better off; if you saw me try to exercise you’d know 🙂
Hi Cort and Jen,
Is it just me or are both of these part 2 videos? Can you tell me how to find part 1?
Thanks.
Nope it was me…They’re both up now.
Also, Issie, can I ask where you receive testing and treatment for the things you mention above?
Thank you.
Sorry, Cort let me know you were trying to contact me. Not as tuned into the forums right now.
My doctor is Dr Steven Fry in Scottsdale, AZ. He is the doctor that discovered this protozoa.
http://drstephenfry.com/
I had my Lyme and co infection testing done with Labcorp. And the other protozoa testing is done at Dr. Fry’s lab. I think a test can be ordered by your doc and sent to the lab for testing.
The protocol I’m doing is what Dr. Fry has me doing. Its for sure WORKING.
Issie
.
Thanks to Cort, Jen and Al Jazeera for seeing that this incredible film about our devastating illness gets out. This provides some hope today. Profound gratitude.
I too had a bit of trouble getting to Part II. I clicked on the Al Jazeera link and was more easily able to view both parts directly from their site.
Thanks Sarah – what really irks me are doctors who see a young lady who recently got married and all the dreams that come with that, a PhD student at Harvard, previously extremely active, and they think it’s psychological. Wouldn’t you think they would consider a person’s history and see how illogical that is? .
Exactly! They have to discard her entire life – everything she’s done – decades of productivity – and assume that she somehow had this massive mental breakdown! The obtuseness of the medical profession is incredible sometimes.
obtuseness I don’t know what that means but I do know that doctors actions often border on the criminal the way they treat me/fms/mcs sufferers
I think the logic starts with the assumption that doctors know and can figure out “everything”. So if something comes along that they can’t figure out, the reason must be that the patient is either deliberately lying or has become too mentally ill to know what is true or false–both of which get labelled as mental disorders/illness.
When this illness first popped up on the radar screen, I think those in charge of identifying it, the CDC, looked for The Usual Suspects (certain “bugs”, the usual disease agents). This was like going to the bad neighborhood and looking on the streetcorner for “the usual suspects” to blame your crime on. But none of them could be shown to be responsibile, so, therefore, the idea that the patients were dissimulating was confirmed!
Then, because this must be so, no respectable doctors or organizations should research it, so next to nothing was found out. So, when a new doctor tried to find out about it, he couldn’t because there wasn’t anything to learn except the idea that the patients were making it up. The longer this goes on, the larger the weight of “evidence” that this must be so, because, how could all these doctors and organizations be wrong?
There is a long history of mistaken beliefs and errors which keep being confirmed among human beings. This is nothing new. We need to get a very firm grip on what our physical realities are to counter the false beliefs about it. We cannot be unassertive, go-along, conformists and hope to be helped and not hurt. We will be hurt.
In my opinion, this goes for all the alternative health practitioners, fad diagnoses and panaceas which come along. Those of us who have been sick for decades know a few of these false trails too.
Always, Hemochromatosis must be ruled out before a diagnosis of chronic fatigue syndrome, fibromyalgia, or cfids is made, for the treatment for hemochromatosis will take care of many of the signs, symptoms, and diseases associated with these conditions.
Hi Cort, can you connect me to Issie regarding treatment?
Best.
Cort, I sent this around and cannot access either part 1 or 2 now. Others have also sent back the inability to access no. 2 today. What the heck?
Can you give us the link to the newscasts?
Best,
V
Ha – now I can see them… and you can’t. Dr. Klimas starts off #2! I’m going to give you the links as I got them – because they’re not working for me when I put them on the page for some reason; maybe they will for you. You may need to just past them into the URL bar.
Watch PART 1: alj.am/1khgXmg and PART 2: alj.am/1khhXqu
Thank you so much for posting this. I, however, cannot access the video anywhere…even on the Al Jazeera site. Does anyone know if it on YouTube yet?
Thanks.
Here are the links that worked for me, Rebecca:
Part I:
http://america.aljazeera.com/watch/shows/america-tonight/2014/1/chronic-fatigue-syndromeactivistslaunchuprisingfrombedspartone.html
Part II:
http://america.aljazeera.com/watch/shows/america-tonight/2014/1/chronic-fatigue-syndromeactivistslaunchuprisingfrombedsparttwo.html
But I got there using Cort’s links. I don’t think it’s on YouTube.
I used this one link to see the text and both videos are on the page. She is such a beautiful woman! I hope her movie gets made.
So amazing to me how her husband did not dump her before the marriage. Such people are very rare, who see the person behind or under the disease, and make a life with them.
On my computer, the audio was not very loud or clear, so the article helped me pick up the words I missed
http://america.aljazeera.com/watch/shows/america-tonight/america-tonight-blog/2014/1/3/1-million-americanshavethisdebilitatingdiseasewithalousyname.html
I was just about to highlight the videos to some people (I did highlight it to many others at the time) but I can’t find it anywhere. If anyone finds it, please post link(s).