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

Messages
2,391
Location
UK
Links to presentations like this (there are quite a few I believe) should all be collated into a single web page; somewhere that the wider public and medical community would be inclined and motivated to visit. Powerful real human stories like this, that people can identify with. The more technical material would belong somewhere else - it is hearts and minds that need to be won.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Links to presentations like this (there are quite a few I believe) should all be collated into a single web page; somewhere that the wider public and medical community would be inclined and motivated to visit. Powerful real human stories like this, that people can identify with. The more technical material would belong somewhere else - it is hearts and minds that need to be won.

Doesn't one of the other (not #MEAction) advocacy orgs have a Humans With ME thing going on? That would seem to be the logical place for such stories. Is that Solve?
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I haven't read the comments thread on YouTube but generally, I think the best thing to do is to talk over the heads of trolls to the wider audience of reasonable people.

Here's a Phoenix Rising resource (which I wrote) on how to take advantage of online news articles (or in this case, a YouTube/TED presentation) by making comments that will help us as a community:

http://phoenixrising.me/how-to-comment-on-online-news-stories

It includes:

  • Do not feed the troll! Don’t engage – just politely direct people to the latest research. Again, cite the IOM and P2P reports. “I get tired too and I just suck it up – you’re all just a lazy bunch of scroungers” should be met with, “It’s important to distinguish between ME and just being chronically tired. ME has many other symptoms than fatigue, including neurological and immune symptoms, and is a serious, disabling multi-system disease. This has been demonstrated in research summarised in the latest report from…” etc. etc. Play it like a rational adult and let the troll look like the stick-poking child that they are. Talk over their heads to your real audience and…
  • Always remember who your intended audience is. It isn’t trolls or people who are incapable of being convinced. We’re talking to patients who might not be aware that our community exists and to the 99% of the general public who will be persuaded by good evidence. We want all of those people on board with us, advocating, educating others and donating to our charities.
 

ash0787

Senior Member
Messages
308
How do you do that?
depends on the one in question, have to try to ascertain their state of mind, personality etc

some are misinformed or have biases, some are just 'shitposting', others are looking to elicit an emotional response,
basically being cruel or vindictive out of sadism, some are just people that have low IQ, an outdated education or a chip on their shoulder.

As to 'don't feed the trolls', again it depends, sometimes thats good advice but often they make a semi convincing argument at the same time and if you don't address that then it can look like you don't have a good answer to their question which then reinforces their beliefs and can persuade others, sort of explained by this article http://www.breitbart.com/milo/2016/09/02/milo-stuns-abc-nightline-trolls-ones-telling-truth/
though in this case its not that they are telling the truth per say its that they are just saying whats exactly on their mind.
 
Messages
31
Location
UK
Like some others on here, I had a frustrating response on Facebook - I posted the video with a comment and have had only four likes. I have posted about ME before and never get much of a response, but when I posted about breast cancer (which I've also had) I had a whole ton of likes and comments. That was lovely but it makes me upset because ME has affected my life so much more than cancer. I had cancer for a few months, hopefully it will not come back, and it has mostly affected me emotionally, whereas ME has made me physically ill and been harming every aspect of my life for nearly 25 years! I fear my Facebook friends do not want to engage with the ME posts because they do not believe it is a real disease.

Hopefully the kind of understanding produced by Jen's talk, and all her other projects, will one day help people see that ME is a real and serious disease.
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
I fear my Facebook friends do not want to engage with the ME posts because they do not believe it is a real disease.

It's probably fair to say that a lot of people have very little understanding of ME. And you're probably right, of those who do, many might associate ME/CFS with their own preconceived ideas about fatigue and how much simple lifestyle is to blame.

I can't really see that changing until science lifts the veil a bit more. The saddest thing about that, in my opinion, is the amount of doctors who aren't familiar with this condition properly. It would be nice if the general public was more sympathetic, but it's important that doctors be.
 
Messages
31
Location
UK
@M Paine - I agree with you, doctors need to understand first, then the right information will be in the media and the general public will receive the truth about ME. As it is, when I try and explain that the NHS treatments for ME in the UK are in fact often harmful, I just end up looking like a crank who doesn't trust authority, rather than someone who knows what they are talking about. So I kind of don't blame people for not understanding, although I would hope that those Facebook friends who properly know me would trust that I am telling the truth.
 

J.G

Senior Member
Messages
162
Jen, I am eternally grateful. Your TEDtalk finally drove home to my friends and family what a devastating, life-wrecking disease MECFS truly is. No amount of articles and videos I shared could make that point so eloquently, and so poignantly. On behalf of all of us, thank you, Jen!
 
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ash0787

Senior Member
Messages
308
Just want to highlight how some patients (I assume, they could be healthy allies of ours) dealt superbly with an ME-denying troll on Reddit. I think some of you might be here, just wanted to say great job.

All can be seen here https://www.reddit.com/r/videos/comments/5okuiz/what_happens_when_you_have_a_disease_doctors_cant/

yeah the original poster is from the me/cfs subreddit, hes quite good with that sort of thing.

I've actually seen very similar posts to throwaway1277474747 before on reddit, it may be the same person,
they don't seem like a troll or a regular uninformed person, possibly someone involved in science in someway.
These factors combined, I would guess this person is likely a paid shill, someone who is employed by people like Ester Crawley to check places like that and add dissenting comments.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Just want to highlight how some patients (I assume, they could be healthy allies of ours) dealt superbly with an ME-denying troll on Reddit. I think some of you might be here, just wanted to say great job.

All can be seen here https://www.reddit.com/r/videos/comments/5okuiz/what_happens_when_you_have_a_disease_doctors_cant/

This is just plain worth reading. I have to be proud of my community. <3

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We don't have a single person flipping out for no reason. There are even a few overreactions followed by, "no, I see what you meant, there, sorry, friend" which are awesome. I wish the internet could always be like that.

-J