help "re-brand" CFS

[fresh_eyes]

Do you have a link, Martlet?

 

[MEKoan]

I just looked it up. Seems it is international law that prohibits its use, and the federal government upholds that international prohibition.

That's a shame. Such a powerful image.

When you think about it, the red cross logo is what keeps them safe in war ravaged parts of the world and means something way beyond the local blood supply.

If anything is, that logo really is sacrosanct.

 

[Marylib]

A snippet

You guys are so inspiring. Something ran thro my brain just now -- have no idea if it will kick anything off or apply to what you already have but here it is:

It is not in our minds.

It is in our brains.

And in our blood.

Would you want to accept blood or an organ transplant from us?



Sounds kinda stupid now that I wrote it down, but maybe it could fit somewhere.

 

[fresh_eyes]

When you think about it, the red cross logo is what keeps them safe in war ravaged parts of the world and means something way beyond the local blood supply.

If anything is, that logo really is sacrosanct.

But, but...I mean, I appreciate the Red Cross as much as anybody, but...Well, what if there's really a dangerous virus in the blood supply?! I mean, it's kind of an emergency!

Perhaps we'll hold that one in reserve, in case the powers that be don't do enough to safeguard the blood supply. Then, if they sue me, so be it - great publicity for the cause.

 

[fresh_eyes]

@ Marylib - good thoughts, very to the point. I think it was mark who wanted to come up with a great rebuttal for the psych lobby - your ideas would be a good starting point. (For my part, I'm not even going to dignify their human-rights-abusing absurdity with a response. )

 

[MEKoan]

But, but...I mean, I appreciate the Red Cross as much as anybody, but...Well, what if there's really a dangerous virus in the blood supply?! I mean, it's kind of an emergency!

Perhaps we'll hold that one in reserve, in case the powers that be don't do enough to safeguard the blood supply. Then, if they sue me, so be it - great publicity for the cause.

I hear ya. But, that symbol is on the roofs of buildings and tents all over the world where people are risking their lives to save lives and that symbol means don't bomb this building/tent/camp. It's a potent symbol that they have to guard fervently and I totally get that.

But, as you say, as a local (US or ?) initiative, in response to a lack of Red Cross action re the blood supply, I'm sure it wouldn't endanger red cross employees in war zones. But, there would be no mistake that it would be, for all intents and purposes, an action targeting the Red Cross specifically because it uses their logo.

And, the Red Cross would answer it. I'm not sure it would look so good on us.

It's a pity that symbol doesn't just mean blood supply because it is very potent but, alas, it means much more.

 

[CJB]

I hear ya. But, that symbol is on the roofs of buildings and tents all over the world where people are risking their lives to save lives and that symbol means don't bomb this building/tent/camp. It's a potent symbol that they have to guard fervently and I totally get that.

But, as you say, as a local (US or ?) initiative, in response to a lack of Red Cross action re the blood supply, I'm sure it wouldn't endanger red cross employees in war zones. But, there would be no mistake that it would be, for all intents and purposes, an action targeting the Red Cross specifically because it uses their logo.

And, the Red Cross would answer it. I'm not sure it would look so good on us.

It's a pity that symbol doesn't just mean blood supply because it is very potent but, alas, it means much more.

I know it's trite, but how about an image of a heart? Still red - still has a connotation of blood.

 

[blackbird]

What does the cross look like if you use whatever the original colours were in the virus image?

I remember Theme Hospital using the same cross shape but in green.
So it can't be the shape, just the combination of it with red.

So what colours are left?


I suppose, once the name issue is cleared up, then the virus on a red background on a double bold acronym could work.

Just thought actually, how can we try and make sure that a global name is created? I don't know whether it was purposeful, or just happened with AIDS, but with the history of naming troubles, and the vested interests still around, it's not a foregone conclusion is it.

 

[blackbird]

You guys are so inspiring. Something ran thro my brain just now -- have no idea if it will kick anything off or apply to what you already have but here it is:

It is not in our minds.

It is in our brains.

And in our blood.

Would you want to accept blood or an organ transplant from us?



Sounds kinda stupid now that I wrote it down, but maybe it could fit somewhere.

The fourth would fit in with the US theme.

It makes sense too.
What doesn't is being diagnosed and offered treatment for your 'attitude' while at the same time being advised not to donate blood.


I missed the 'die' discussion earlier, but I'm all for it.
Just because there's a chance of progress due to the XMRV research, do you think the psych lobby and insurers are going to say 'fair cop. we had a good run' and step aside?

At some point, everything has to be fair game to claw recognition back, and make sure that they can't bury this research like they have with others in the past.

 

[fresh_eyes]

What does the cross look like if you use whatever the original colours were in the virus image?

I remember Theme Hospital using the same cross shape but in green.
So it can't be the shape, just the combination of it with red.

So what colours are left?

The original image is b & w - a possibility.

I just heard on the radio about dispensaries for medical marijuana in California all using a "green cross" symbol.

ETA Maybe background red & cross with b & w virus.

 

[blackbird]

OK, sorry about the multi posting, but they were separate things.

I'm going to have to take a seat in the stands and watch here for a while anyway. I started a first steps to recovery thread days ago, and it's sorely neglected. The benefits people are hardly likely to magic away the problems I'm having with them either, so a step back is called for.

The Umbrella Syndrome stuff is up thread, so feel free to bash it around if it looks like it could be useful.
(The logo is only there for want of a global name. CFSOUT/ME/CFS/CFIDS/XMRV or any charity is what would really be there).

Other ideas I'd had which didn't fit the US theme:

-----------------------

Imagery of legal system applied to the lives of sufferers:


In GPs surgery, with GP dressed as a judge, and patient in suit.
GP/Judge handing down an indeterminate sentence (in the news in the UK at the moment)
No parole hearing until the research is done.

------------------------


Prison bars on a bedroom door.


Prison bars on a front door. (maybe clamped car outside too, but not sure that would work).

------------------------

Another Idea was to have a Life History, or possibly a CV (resume for US?)

CV could be:

name: blah
address: blah

school stuff

Career:

80-85 Retail Shoe Salesman
86-89 Assistant Manager
90-92 Store Manager
92-92 Area Manager for 2 months
Diagnosed with ME
??-?? Area Manager (on hold)
??-?? Regional Manager (on hold)
??-?? Vice President (on hold)


With everything after the 'Diagnosed with ME' in grey.

Could have a few versions for different careers. Sports, charitable, religious, medical, music.
With whatever the current style of CV/Resume, I reckon it could look quite good.

(Maybe even something for the May 12th Awareness day. All these people who have disappeared from society, and what they would have been doing. All those that couldn't attend)

 

[fresh_eyes]

Those are some amazing images, blackbird. Thank you for your wonderful creativity. You do what you need to do, we'll be here when you get back.

 

[anne_likes_red]

I really like the idea...

of the CV fading to grey. I've often heard it said we become ghosts of our former (often high achieving) selves and I think this would illustrate that really well.

So many people are so focussed on getting ahead...what a good reminder that some of us might dearly love to get a half a hold on the bottom rung of the ladder again.


An image I often get of what happened to me is that I went from merrily rowing along with all my energetic peers in the ocean, a bright happy bunch of us...(me in the front few of course)...to WHAM...then really struggling to keep up briefly before realising I was all alone and unable to row effectively ...So I was pretty much drifting at the mercy of the ocean for a very long time tossed around occasionally...former peers growing up and racing by in various pleasure craft.


I thought of this silly thing...It's definitely not intended as a serious contribution!

Cost of Wessley's subscription to "Psychiatry Has All The Answers Today." - $150 per year.

Cost of Reeves' country club membership - $15k per year.

Cost of denying that CFS is a progressive, debilitating, infectious disease for three decades?...

**

 

[starryeyes]

I like Blackbird's ideas. Maybe they would work well on a brochure too?

I can't post the ads I like here today.. weird...

Anyway, I love the one that says:

CFS Sucks

a stupid name for
a really serious disease.​

but I like the word "lousy" best! errrrr... Scratch that - see my post after gracenote's below this.

I want this in a long sleeved tee-shirt that I can wear to the doctors. I think they'll be more receptive to the word "lousy" as well.

I also think cfsout.org is best especially after running both by my techy husband. He said people pay more attention to the first few letters so we probably don't want to start with "out".

As much as we want to change the name "CFS" it does look a lot better on posters and in the .org name. Maybe that's part of why we've been stuck with it. I do think we could go with CFIDS which is a much better description but ME/CFS or ME/CFIDS looks cumbersome to me in comparison to CFS or CFIDS on ads, tee shirts, buttons, bumper stickers, brochures, posters, billboards, coffee mugs etc...

Also, the first ad I listed above would have to say CFS in order to make sense. On that note I think we should probably spell it out for people:

Chronic Fatigue Syndrome Sucks
a lousy name for a really serious disease.​

then again "CFS" could get them asking what it stands for which is good too.

My other favorite ad so far is:

DO PEOPLE DIE FROM CFS
or just lose their lives?​

I love the poster with the cross and XMRV in it too! How about using a giant, red blood drop instead of a cross?

 

[gracenote]

T-shirts R US

CFS Sucks!

a stupid name
for a serious disease​

I like it this way having all the words start with "s" and without the "really." (Although I'm not fond of the word "stupid," it worked really well with "It's the economy, stupid.") I like the T-shirt idea, too. That could be pretty easy to figure out, right? I think this is something we could use by itself right now while we try to figure out our perfect message and goal, etc. for the rest of our campaign.

Don't you like how I say "while WE try" and "OUR campaign." I will happily take credit for everything WE figure out while YOU ALL do the creative work.

​

teejkay, I like the drop of blood idea (instead of the cross).

 

[starryeyes]

Cool gracenote -

I see your point about:

CFS Sucks!

a stupid name
for a serious disease​

I agree. The S's make it work and you know, simple is best! KISS (keep it simple, Stupid)

If I was out and about and saw someone wearing a sweatshirt or shirt with that on it I would be so thrilled, I'd probably run up and hug them and thank them profusely.

I hate to bring this up, but are we reinventing the wheel?

Did you all know about this site:

http://www.chronic-illness.org/cfs_t_shirts_gift_ideas.html

or this one:

http://www.zazzle.co.uk/chronic+fatigue+gifts

Well, I guess I'm wrong about shirts, coffee mugs etc... duh! I knew these other sites existed years ago but forgot in the excitement here.

Well they still haven't created ads and that's what we were originally talking about and we still need decent brochures but we're not really "re-branding" here, are we?

 

[cinderkeys]

taglines

For tagline purposes, I like dropping the "really"/"very" as well.

One issue with "CFS sucks" that just occurred to me: we all know what CFS stands for, but most everyone else won't.

I like this:

ME/CFIDS
We don't know how many people die from it
But millions have lost their lives from it​

... but it could also be punchier with fewer words. I'd edit to:

ME/CFS
We don't know how many people die of it
But millions have lost their lives​

 

[gracenote]

What is CFS?

For tagline purposes, I like dropping the "really"/"very" as well.

One issue with "CFS sucks" that just occurred to me: we all know what CFS stands for, but most everyone else won't.

But what if with each T-shirt that's sold we add a tag that gives the buyer a short sentence to answer when someone says "What's CFS?" Or maybe a choice of two or three sentences? I would love to show you my brilliant answer to what those sentences should be but . . . a . . . I don't want to be a show off! I'll let someone else come up with them.

Or maybe we could include one of the brochures teejkay is creating, or we could give each T-shirt wearer a bunch and they can pass them out when asked! Now THAT's brilliant, if I do say so myself!

 

[starryeyes]

I agree Cinder.. this is much better:

ME/CFS
We don't know how many people die of it
But millions have lost their lives
​

and you know, ME/CFS looks good here. Maybe we would pick and choose which acronyms we use as we go to suit our purposes since they're already all being used simultaneously anyway.

Did you all see this:

Did you all know about this site:

http://www.chronic-illness.org/cfs_t_shirts_gift_ideas.html

or this one:

http://www.zazzle.co.uk/chronic+fatigue+gifts

Well, I guess I'm wrong about shirts, coffee mugs etc... duh! I knew these other sites existed years ago but forgot in the excitement here.

Well they still haven't created ads and that's what we were originally talking about and we still need decent brochures but we're not really "re-branding" here, are we?

I've seen MS and AIDS ads on buses btw. Also people with MS used to come to the Elementary School I taught at to hold educational assemblies for the students. I'd love to see that happen for CFS.

 

[fresh_eyes]

One issue with "CFS sucks" that just occurred to me: we all know what CFS stands for, but most everyone else won't.

Thanks for giving your feedback, focus group. Keep it coming.

Re: the above, I don't feel like I've articulated this very well, but I feel that could be our advantage. When you tell someone you have AIDS, I don't think they ask you what that stands for. If we got "C.F.S." branded on people's brains, we could avoid constantly repeating the F-word, if you know what I mean. (I mean, Acquired Immune Deficiency Syndrome doesn't sound all that bad either, if you didn't know what AIDS was...Can't you hear the comments: "Oh, you have a deficiency? I think I have that! You should take a multivitamin!")

Here's my line: "I have CFS. It's a neuro-immune disease." (And we can follow that up with Khaly's line: "Oh? What does that stand for?" "Completely Fed-up Sickpeople." )

There's a big problem with "ME/CFS" of "ME/CFIDS" - and this is nobody's fault, it just turned out this way - you can't use it effectively in a web address because of the slash. MECFS is a bit confusing IMO.

I agree with whoever said that "M.E." has some problems with a sort of "it's all about ME" vibe. In that case, the full words are way better, but SO much of a mouthful...

AND with CFS OUT!, I'm hoping to register an objection to the name, as in, Let's get rid of it, while at the same time hopefully rehabbing it.

So, in summary D), I don't think it would be an effective campaign if we muddy the message with a variety of names or abbreviations.

Also re: reinventing the wheel - I figure there's nothing new under the sun, so I'm not surprised it's all been done! I do think that, apart from the concepts, it would help us out a lot if our materials (be it brochures, tshirts, posters, whatever) had a more professional, "official" appearance than what I've seen (except from the CAA - which are very professional but not always great in concept, IMO).

Thanks again, all.

ps Cinder, do you have CFS (or whatever!)? Or are you "just" a supporter?