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Jen Brea: What happens when you have a disease doctors can't diagnose - TED Talk!

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
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me/cfs 27931

Guest
Messages
1,294
Thanks for this @JenB.

I just have one comment. As a male ME/CFS sufferer for 4 decades, I can't ever recall being told by a doctor "to be strong" or "to buck up". Not once.

I have been continually met with disbelief. I have been told my symptoms were due to psychological issues. I have had initially sympathetic doctors get angry with me for "wasting" their time running tests that turned up normal.

I'm not convinced by your gender inequity argument. In the 37 years it took to be correctly diagnosed, I'm not convinced I would have been treated worse if I were female.

However, I am very open to being proven wrong.
 
Messages
84
Thanks for this @JenB.

I just have one comment. As a male ME/CFS sufferer for 4 decades, I can't ever recall being told by a doctor "to be strong" or "to buck up". Not once.

I have been continually met with disbelief. I have been told my symptoms were due to psychological issues. I have had initially sympathetic doctors get angry with me for "wasting" their time running tests that turned up normal.

I'm not convinced by your gender inequity argument. In the 37 years it took to be correctly diagnosed, I'm not convinced I would have been treated worse if I were female.

However, I am very open to being proven wrong.

JenB's argument is not that female CFS sufferers get treated worse than male CFS sufferers.

Her argument is that everyone who suffers from CFS and other invisible illnesses are suffering as a consequence of hundreds of years of psychobabble which has historically mostly been aimed at women.

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I did enjoy the perspective of undiagnosable diseases in general, as well as the focus on misogynist psychobabble since it is likely to make the video appeal to a larger audience. Whether such a focus could scare some away, I am of the view that people who employ lingo which includes gems like ''feminazis'' or ''SJW's'' usually lack as much brains as they do empathy, and are not likely to support our cause regardless.

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Being male, I have been told in countless ways to ''Suck it up'', ''Everyone has problems, no one is perfect'', ''get my shit together'' and my personal favorite that I should ''stop sabotaging my life''.

The health care professionals have been both male and female.

I read through and honestly it's just the usual trolling. Like 'OMG FEMINAZIs' and a few people making sexual proposals. As one does on YouTube.

A day not spent aggressively pursuing females with indecent proposals of marriage and sex on Youtube whilst twirling my beard and enjoying my morning coffee is a day wasted. #YOLO #Carpe Diem #C'est La Vie
 
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me/cfs 27931

Guest
Messages
1,294
JenB's argument is not that female CFS sufferers get treated worse than male CFS sufferers.

Her argument is that everyone who suffers from CFS and other invisible illnesses are suffering as a consequence of hundreds of years of psychobabble which has historically mostly been aimed at women.
Fair enough. Apologies for my misunderstanding.

However, I still disagree that male patients are told by doctors to "buck up" and "to be strong". This has not been my experience.
 

Aurator

Senior Member
Messages
625
However, I still disagree that male patients are told by doctors to "buck up" and "to be strong". This has not been my experience.
I'm male and wasn't told to buck up or be strong either. Instead I was laughed at by one specialist (an endocrinologist) and teased by the other (an ENT consultant). Both were female.
 

*GG*

senior member
Messages
6,389
Location
Concord, NH
-------

I did enjoy the perspective of undiagnosable diseases in general, as well as the focus on misogynist psychobabble since it is likely to make the video appeal to a larger audience. Whether such a focus could scare some away, I am of the view that people who employ lingo which includes gems like ''feminazis'' or ''SJW's'' usually lack as much brains as they do empathy, and are not likely to support our cause regardless.

I don't agree with this, I think the PC police are out in left field, and many people are tired of it. (Trump winning the presidency is proof of that.) Some of it is just nature, I would probably describe one of my friends wife as a "feminazi", (1 of his other Best friends did) seems like a rather fitting title.

Lots of that SJW stuff is crap as well, nothing is perfect, why not try to help people who are truly down trodden and need help! Gov't typically makes things worse, not better, so enough with the social "engineering". Sure engineers do not like that word used ;)

On the whole I think the work Jen and ME Action is good :)

GG
 

Forbin

Senior Member
Messages
966
I have been continually met with disbelief. I have been told my symptoms were due to psychological issues. I have had initially sympathetic doctors get angry with me for "wasting" their time running tests that turned up normal.

This is exactly what happened to me this last week. As stubborn as I am, I will continue my quest for answers and treatments.

This is what happened to me (a 24-year-old man) in 1984. A doctor who was substituting for my regular doctor told me, and I quote:
"Patients like you are a burden on insurance companies."
I had not requested any tests or treatment. I had merely given him an overview of what I'd gone through in the previous year.

I'm not sure if it is true that ME/CFS is 80% women and 20% men, but it would be interesting to know if it would be treated differently if those numbers were reversed. On the other hand, Gulf War Syndrome patients seem to have been shown similar disbelief, and I assume the majority of those cases are men.
 
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Kati

Patient in training
Messages
5,497
I am truly hoping that @JenB 's Ted talk and movie will fast forward the discussions, the research and the clinical trials that need to happen surrounding our health care and health policies. While each country is slightly different in terms of health care system, we can all agree that we have been grossly neglected, insulted, mistreated and left for dead.
 
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Cheesus

Senior Member
Messages
1,292
Location
UK
Check out the top comment on Youtube:

Good on you Jennifer Brea! Before this video I didn't even know that ME existed and I believe that now you have shed the light on this crippling disease.

This is why Jen's work is so vitally important, and why it's up to us to spread it to the masses!

The video on Youtube has also had around 96% likes relative to dislikes. That is a really great show of support. Videos with that kind of ratio often receive many more views than others. It now has more than 27k views.

ETA: Another case in point from Youtube:

I never knew CFS was this serious. Completely enlightened me. To all those suffering, stay strong and all the best. I hope it gets more medical attention soon.
 
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Cheesus

Senior Member
Messages
1,292
Location
UK
92,500 views on TED now, since I posted the above message an hour ago. Keep spreading the message! :)

I've had a fantastic response on Facebook. People who I havent spoken to in years are making really positive comments, and I have had people thanking me for informing them about something they didn't know anything about.

Also, did anyone notice in the video at 14:27 @Valentijn (or someone with the same name) features in a poster at the Millions Missing march? Was that you, Valentijn?