Solve ME/CFS Initiative Times Square public awareness video

[alex3619]

Are y'all allergic to enthusiasm?

Do they make a pill for that?

One of the big failings has been we have not been able to make our issues public enough. We could be ignored. Just imagine for a second, global coverage of New Year in NYC, and a journalist looks up ... what's that? It could become a big news event just from that.

This type of advertising is not aimed at deep and accurate education. Its aimed at creating interest and changing perception. How many will start with a Google search as a result of this, and wind up being educated about ME?

 

[alex3619]

For the Tymes Trust image of the child on oxygen, I would really like that image to say, "does it look like she needs more exercise?"

that's a great ad idea. I'd like to see that one.

ditto

 

[taniaaust1]

I think this ad is great (though with my brain the images flash too fast but that wouldnt be a problem for a normal person), it needs to use Chronic fatigue sydrome as it has as that is what everyone over there uses and without that there will be no connect with it and it does have myalgic enceph (however its spelt) under that so helps people connect CFS with that name to.

I find nothing at all wrong with the images. I find them shocking and I think the general public would too. It should be an eye opener for most who know nothing about this illness or may just think its about tired people.

Congratualations to those who put this together and have got this out there. Im giving them a 10/10 and think things like this is what we need (among other things too).

I think there are too many being critical and negative of others attempts to help things. How about giving more support to those trying to help things for us and for the hard work they put in.

 

[Bob]

I really value you guys so much...

The feeling's mutual!

 

[BurnA]

How many will start with a Google search as a result of this, and wind up being educated about ME?

I don't know but I'd guess far more would do a Google search if they were sitting in front of their pc, tablet or phone and saw the ad.


I'm not claiming to know the stats but I'd like to know the engagement rate of an ad in Times sq. Versus you tube or Facebook or instagram.

 

[JaimeS]

We can't know that, though, @BurnA, because no one follows those folk around and finds out what they do next! This isn't something we (or Times Square) could ever get data on. You might ask the advertising company by what percentage their visits went up or something... that might get you close to understanding impact...

I take your point, and I think 10 years ago it would have been a bigger deal. But these days no one is far from the internet, and they can look up anything they want to with the device in their back pocket.

-J

 

[Bob]

I think the most important question is will we be better-off or worse-off after this advert is broadcast.
It's basically only intended to get people to visit the website.
If it causes some people to go to the SolveME/CFS website, or if it elicits a few donations, then that's a win.
With so little space available to add any details, they've done about as much as they can.
The most important thing is to include a name that people recognise (and will remember after glancing at it) and to include the web address.

 

[BurnA]

We can't know that, though, @BurnA, because no one follows those folk around and finds out what they do next! This isn't something we (or Times Square) could ever get data on.

I think the most important question is will we be better-off or worse-off after this advert is broadcast.
It's basically only intended to get people to visit the website.

I don't want to sound like I am critical or do t appreciate this effort and if it's a better off or worse off then we are better off.

However if it's a quaetion of putting money to good use and optimising engagement I don't think this is the best we can do.

PS @JaimeS I would say every advertising agency knows exactly the ruturn on billboard versus online advertising. ( don't ask me how !)

 

[JaimeS]

I don't want to sound like I am critical or do t appreciate this effort and if it's a better off or worse off then we are better off.

However if it's a quaetion of putting money to good use and optimising engagement I don't think this is the best we can do.

PS @JaimeS I would say every advertising agency knows exactly the ruturn on billboard versus online advertising. ( don't ask me how !)

If they really do, then we did well: Times Square is one of the most expensive places to advertise in the entire country. If the data for engagement exists, then people must be willing to pay that price.

-J

 

[Bob]

However if it's a quaetion of putting money to good use and optimising engagement I don't think this is the best we can do.

Maybe, but there's always more we can do as a community...
And resources are limited...
It's an ongoing process and we learn as we go and we always build upon the last thing we did.

 

[BurnA]

Maybe, but there's always more we can do as a community...
And resources are limited...
It's an ongoing process and we learn as we go and we always build upon the last thing we did.

Agreed and I will stand corrected on engagement if anyone has data. Its a minor quibble - I am impressed that they are doing this and as you say its far better than nothing.

 

[Snowdrop]

It would be easy enough in my opinion to change perception of the illness via name change by simply reversing the names. Instead of Chronic Fatigue Syndrome (Myalgic Encephalomyelitis) it could be
Myalgic
Encephalomyelitis
(known disparagingly as chronic fatigue syndrome).

I have no opinion on the images. That's a tough one as it's very brief and trying to grab attention quickly. No image is going to really be that image that will capture how we feel with this illness and what is really going on. (OK so maybe I did have an opinion)

I think the fact that this is going to happen is brilliant. My thanks to. . . (I don't know who to thank)
I hope whatever gets displayed has an impact.

 

[mfairma]

So, I wanted to take a stab at this myself. This sort of creative work isn't really my forte and I don't have any good software to do this sort of thing, so I used iMovie, which I discovered isn't a very good program.

Doing it, I was reminded of a skit from the British sketch comedy show That Mitchell and Webb Look, which perhaps some of you have seen: "Ok . . . Not This." If not, I think you'll find it funny and relevant. At least I do:

Here is a link to the silent fifteen second version I did, using some footage I found on a sweet video that a patient made and put on youtube, which, sadly, had too few views for its quality. The footage, I think, is from one of the older documentaries: https://dl.dropboxusercontent.com/u/28709970/10 Second.mp4

I made a few others that are longer and have sound that I can share if there is any interest.

 

[BurnA]

So, I wanted to take a stab at this myself. This sort of creative work isn't really my forte and I don't have any good software to do this sort of thing, so I used iMovie, which I discovered isn't a very good program.

Doing it, I was reminded of a skit from the British sketch comedy show That Mitchell and Webb Look, which perhaps some of you have seen: "Ok . . . Not This." If not, I think you'll find it funny and relevant. At least I do:

Hilarious.

Here is a link to the silent fifteen second version I did, using some footage I found on a sweet video that a patient made and put on youtube, which, sadly, had too few views for its quality. The footage, I think, is from one of the older documentaries: https://dl.dropboxusercontent.com/u/28709970/10 Second.mp4

I made a few others that are longer and have sound that I can share if there is any interest.

Excellent work and it just shows that if something like this can be cobbled together at home then there is no excuse.


Would love to see the others.

 

[Bob]

Here is a link to the silent fifteen second version I did, using some footage I found on a sweet video that a patient made and put on youtube, which, sadly, had too few views for its quality. The footage, I think, is from one of the older documentaries: https://dl.dropboxusercontent.com/u/28709970/10 Second.mp4

I think that's great, mfairma

If you were to place it on YouTube (if u have permission from the original video owner) then we could promote it on social media.

 

[JaimeS]

It's really good. Very powerful!

 

[mfairma]

Excellent work and it just shows that if something like this can be cobbled together at home then there is no excuse.

That's really why I tried to do my own. I'm not a particularly creative person, but what I made is, at least to me, better than the Solve ad. If Solve is going to display an ad, I think it should be possible to find someone who can do something truly great for limited costs, particularly given how short the ad is and given that it lacks sound.

Further, one of the things that MEAction and Millions Missing have done particularly well, in my opinion, is thinking through branding. It seems like if this is the first foray into doing this sort of ad, then it would be a good time to try to establish a certain brand. The "Does that sound like fatigue to you?" tag is one way you could establish continuity across different publicity efforts, but there are of course other and surely better ways. @JaimeS's tag about sick patients and exercise, for example. My approach may be more aggressive than what Solve might want to do, but people are more likely to notice and remember mine, where their ad is more milquetoast.

I made four others, with which I have varying degrees of satisfaction. They are longer, 3 at 30 seconds and 1 at 1 minute, and considerably rougher, particularly because iMovie doesn't handle sound very well and the timing on the descriptions is generally a bit too quick. The main point, I think, is that, in the absence of a photogenic disease, sound and music and description can be used to have contrasting and amplifying effects on the emotions of the appeal. Additionally, that the traditional sort of advocacy ad you see on TV wouldn't suit us well, that what I was trying to do in the ads is an alternative path. These aren't good, but to me they show what could be done by someone that knows what they're doing.

The first one uses a picture of Whitney and the Bobby Mcferrin song Don't Worry By Happy. Licensing, of course, may be prohibitive for an actual ad.: https://dl.dropboxusercontent.com/u/28709970/Don't Worry.mp4

The second one focuses on Karina and uses a video I found on youtube of an IV line dripping and the Mississippi John Hurt cover of You Are My Sunshine. I don't think I got the right section of the song -- it's a bit too upbeat in sections -- but I chose this version because I never realized how plaintive and tragic that song is until I heard his version: https://dl.dropboxusercontent.com/u/28709970/You are My Sunshine.mp4

The third one uses the same IV pole dripping, but I liked the original background noise because it could be used to demonstrate what the noise sensitivity is like, as a subtle addition, and convey the emotions of waiting: https://dl.dropboxusercontent.com/u/28709970/Can you Wait.mp4

The last one I really only made because I love the song and think it is perfect for this disease. The song is Nina Simone's version of I Wish I Knew How It Would Feel to be Free, a civil rights anthem with lyrics that are incredibly appropriate to being sick with this disease. Its just a beautiful song, if you've never heard it. I set it to some description and pictures of the shoe protest. I hope thats not too presumptuous, because, obviously, I had nothing to do with it: https://dl.dropboxusercontent.com/u/28709970/I Wish.mp4

The full song is here:

P.S. If you liked that Mitchell and Webb skit and you don't like homeopathy, you may like their skit on it:

 

[JaimeS]

The #MillionsMissing protest is very cool, I love it! I shared it w/others at #MEAction, hope that's okay.

Karina's story of being sent to a psychiatric institution connects the idea of ME and psychiatric institutionalization in the public's mind, where it may not have been, before (at least not in the US). A quick video isn't enough to convince anyone just how horrific this decision was, so we've done the other side's job for them by ensuring that they know that there are those who consider ME a psychiatric illness. Since doctors have the Appeal to Authority on their side, I can lay bets on who the random stranger in Times Square is most likely to believe.

The Don't Worry Be Happy creates a sick dissonance (which I can see as being its job!) But for me it's too much. I had to turn it off. I think this is more personal, I think others might be compelled to watch, like a train wreck.

I think it's amazing that you're doing all of this. I used to have a subscription to Camtasia Studio, which actually created great vids, but now all I have is freeware that sucks pretty badly.

You're still making me want to give it a go, though.

-J

 

[mfairma]

Karina's story of being sent to a psychiatric institution connects the idea of ME and psychiatric institutionalization in the public's mind, where it may not have been, before (at least not in the US). A quick video isn't enough to convince anyone just how horrific this decision was, so we've done the other side's job for them by ensuring that they know that there are those who consider ME a psychiatric illness. Since doctors have the Appeal to Authority on their side, I can lay bets on who the random stranger in Times Square is most likely to believe.

Yes, I agree. I played for a while with different descriptions, but wasn't really happy with any of them. I don't think Times Square is the right audience and I don't think my attempt works, but I do think that it is incredibly powerful and disturbing that patients are being sectioned for having ME and that the community should find a way to call attention to that. My attempt doesn't do it, but I think the right person could.

As to the use of Don't Worry, I agree. It is disturbing. This disease is disturbing and I think we need to find a way to convey to people what we know and feel. What has happened is deeply morally and ethically wrong and I think our efforts should find a way to call attention to the stark colors we live. I don't see the Solve ad as doing that.

I also think our personal connection to the disease will make any appeals stronger and more emotional to us, but I dont think outsiders will have quite the same reaction. I think, when you are removed from it, that type of ad is more arresting than deeply disturbing. We're not any other disease. Our story is unique and shameful and advocacy efforts should reflect and attempt to convey that.

That said, this isn't my skillset and it's not something I will try to take further. My intention was just to point out the type of things I think could suit us well. With the Mitchell and Webb skit in mind, "not this, this is shit, but something like this."

 

[Snowdrop]

I'd like to see something like: This could be YOU.---along with the images and then: ME/cfs can strike anyone.
Yes it's a bit of fear mongering but it's true and it creates a sense of vested self-interest.

What I wish we knew is--is ME becoming more prevalent? Is it possible that it first manifested as an illness in isolated pockets but when there was no treatment preventing it from persisting in the population it has become more prevalent?

@mfairma 's post made me think of another alternative. How about someone out doing something energetic/happy enjoying life/friends no sound just a brief cameo and then the picture turns to black and white (after a vivid colourful scene) and then an image is shown of someone with ME --using the above heading of course