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

Kati

Kati

Patient in training
Messages
5,497
Jennifer J said:
Since Friday (3 1/2 days) ~130,000 more! :thumbsup:

Total views 353,332 :)

Please view everyday and share. Thank you! :hug:

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
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I think what matters most is that people who are in no way associated with our community gets to watch it. These are the views that matters most. We could watch all we want, if it remains within the safe boundaries of our community, nothing changes.

Share widely on social media. Try to reach out untapped audiences.
 
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J

Jennifer J

Senior Member
Messages
997
Location
Southern California
Kati said:
I think what matters most is that people who are in no way associated with our community gets to watch it. These are the views that matters most. We could watch all we want, if it remains within the safe boundaries of our community, nothing changes.

Share widely on social media. Try to reach out untapped audiences.
Click to expand...

Thanks, Kati. I agree. That's was what I was aiming for in having us watch it everyday and also share it. If the viewing numbers are high and it is placed on TED talks as trending, or however they place viewed a lot talks, more people will notice it that aren't in our community and hopefully check it out.:)

https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
 
H

Hajnalka

Senior Member
Messages
910
Location
Germany
Just in case anybody else made the same mistake I did. ;) I added up the numbers from TED.com and Youtube. But if you klick on the number of views on TED.com, it says:

This number combines views from the following outlets:
  • 34% TED.com
  • 9% TED apps
  • 22% iTunes
  • 23% YouTube
  • 12% other
 
C

Cog71

Messages
47
Location
Los Angeles
slysaint said:
It's there.:thumbsup:

It could do with a few more accurate (ie ME/CFS sufferers) comments.

One I also question was this one (saying that a lot of CFS diagnosed people probably had Lyme).

"The huge symptoms difference in these TWO SEPERATE diseases: Lyme has joint pain. ME/CFS does not"

I get joint pain and I thought this(as well as muscle pain) was also quite 'common' symptom of ME??
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Exactly. In fact the two friends I personally have with Lyme don't have joint/muscle pain at all whereas both have been a big part of my illness from the beginning.
 
Louie

Louie

Messages
21
Location
Canada
actup said:
Ted Talks views up to 226,310! I plan to view everyday indefinitely.
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I can assure you and others repeatedly watching Jen's TED talk that the TED servers have software to track whether you are a unique or first time visitor and will not count as a "view" a repeat or multiple view more than once. This is to prevent special interest groups from skewing the counting of views.

The good thing is all of these views recorded and counted are in fact accurate.

Way to go Jennifer Brea @JenB.
 
S

Sidereal

Senior Member
Messages
4,856
Every ME/CFS article or video comment section tends to be overrun by Dunning-Kruger types who think some simplistic 'explanation' is the cause of ME/CFS. It usually manifests as annoying pushy comments like

It's all Lyme!
It's all hypothyroidism!
It's all adrenal fatigue!
It's all mold!
It's all vitamin xyz deficiency!
Etc.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
AndyPR said:
Now at 414, 548 views.

A number of "all ME is Lyme" comments have been made, which I suppose was inevitable. :rolleyes:
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Hey ho! Given that many cases of ME seem to be precipitated by an infection of some kind*, then Lyme disease presumably becomes just another possible candidate for triggering ME. Hardly equates to ME being synonymous with Lyme disease.

* But not sure if ME-triggering infections include bacterial ones?
 
A

AndyPR

Senior Member
Messages
2,516
Location
Guiding the lifeboats to safer waters.
Barry53 said:
Hey ho! Given that many cases of ME seem to be precipitated by an infection of some kind*, then Lyme disease presumably becomes just another possible candidate for triggering ME. Hardly equates to ME being synonymous with Lyme disease.

* But not sure if ME-triggering infections include bacterial ones?
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Well, given that it appears mold can be a trigger as well, theoretically why not bacterial? But as you say, claiming one sole cause for ME, given our current understanding, is very much a reach.
 
B

Barry53

Senior Member
Messages
2,391
Location
UK
Sidereal said:
Every ME/CFS article or video comment section tends to be overrun by Dunning-Kruger types who think some simplistic 'explanation' is the cause of ME/CFS. It usually manifests as annoying pushy comments like

It's all Lyme!
It's all hypothyroidism!
It's all adrenal fatigue!
It's all mold!
It's all vitamin xyz deficiency!
Etc.
Click to expand...
You forgot: It's all in the mind!
 
A.B.

A.B.

Senior Member
Messages
3,780
Sidereal said:
It's all adrenal fatigue!
Click to expand...

Well adrenal fatigue is just a label for a bunch of symptoms, and it seems pretty close to the CFS phenotype (shifted more towards the milder end of the spectrum, with more emphasis on presumed endocrine problems, some of which might actually be dysautonomia). Rest and stress avoidance is often recommended for adrenal fatigue which may be a variant of pacing. Cortisol supplementation also seems to help somewhat, just like in CFS.

I can't wait for a reliable biomarker and large scale investigations that will clear this all up.
 
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