help "re-brand" CFS

[blackbird]

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

I didn't understand the Umbrella Syndrome idea... isn't that more vague than Chronic Fatigue Syndrome?

@teejkay - If you think any of the ideas could be useful in brochures, feel free to run with them. I'm going to have to ease off for a few days, but I'm all about the initial idea anyway, so if the start point is useful, it's probably better for someone else to use it.

@charityfundraiser - It is more vague, but to my mind more inclusive. It was this thread that caused the ideas to appear, but you're right, it's not helping re-branding. Maybe there should be a 'future ad campaign' thread. (I only mentioned it at the end of one of my posts, but the umbrella logo is more of a placeholder for a global ME/CFS name, charity or web address)

I'm thinking these ad campaigns should be for after the WPI study is confirmed multiple times and after the blood supply issue is determined to be a problem. The public is ignorant of the subject either way. But if we run the campaigns before and the study falls through or the blood supply isn't an issue, then we repeat casting doubt on the disease as a real issue. If we wait till after things are confirmed, then we don't risk that. It is probably only a matter of several months before we know more info.

Agreed, but we can't guarantee which of us will be fit to put one together when the time comes. Certainly if it needs to be done quickly. If we can get a start and build a bunch of themes and ideas in advance, it could help when the time does come.

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.

Let's get US on the bus!

 

[fresh_eyes]

Hey y'all - I won't be around much for the next couple days. Still working on design stuff, though. I think we've firmed up the basics of a good little campaign. See you when I get back, friends.

 

[starryeyes]

Okay fresh eyes and thanks again.

Blackbird wrote: teejkay - If you think any of the ideas could be useful in brochures, feel free to run with them. I'm going to have to ease off for a few days, but I'm all about the initial idea anyway, so if the start point is useful, it's probably better for someone else to use it.

Thanks Blackbird.

 

[mvwu]

Fresh Eyes -- Your material is brilliant.

Your poster of the rock star missing is one powerful image. I had an immediate involuntary reaction (gasp, heart leap) when I saw it. The sense of an energetic man struck down in his prime couldn't have been conveyed better. To paraphrase one of you fine foks, enough of the sad woman looking out the window. Fresh Eyes' idea for a series of posters -- kids "missing" in action, white silhouettes where sports figures had been demonstrating their prowess....This idea is a "wow."

These are my favorite slogans:

DO PEOPLE DIE FROM CFS
or just lose their lives?

CFS Sucks
a stupid name for
a serious disease.
​

(I join the chorus voting for only essential words.)

On a more sober note:

Also, experience has shown that that even among people with similar genetics living together there does not appear to be much of a contagious effect in many cases for ME/CFS.

I am not, at this point, for a campaign advertising contagion, but I want to add a reminder there IS evidence for it:

"Unrelated spouses/partners of the CFS patients were eight times more likely than the general population to have CFS. (Six of 186 spouses and partners, or 3.2 percent of them, were diagnosed with CFS, compared with 0.42 percent for the general population, as calculated in a past community-based study by Jason, et al.)"

from http://www.prohealth.com/library/showarticle.cfm?id=7175&t=CFIDS_FM

Enough of that last. Too depressing.

Back to the genius of the last twenty pages. Fresh Eyes, when you first mentioned setting up this thread, I was all for it, but I had reservations. Specifically,

--Cash on hand for project: $0.00
--Paid staff: Zero
--Volunteer staff: Not at their best.​

With this thread, those reservations are gone. Flat on your back, brain fog, whatever. None of this is stopping you folks of the forum. You are taking the PR for this disease into your own hands -- it boggles my mind to think of what you were like at your peak.

 

[Katie]

Back to the genius of the last twenty pages. Fresh Eyes, when you first mentioned setting up this thread, I was all for it, but I had reservations. Specifically,

--Cash on hand for project: $0.00
--Paid staff: Zero
--Volunteer staff: Not at their best.​

With this thread, those reservations are gone. Flat on your back, brain fog, whatever. None of this is stopping you folks of the forum. You are taking the PR for this disease into your own hands -- it boggles my mind to think of what you were like at your peak.

A force to be reconned with indeed! Imagine us all coming back into school or the workplace if there are soon treatments be it for XMRV or gene expression, with us having learnt the importance or making the most of every ounce of energy and knowing how precious life is, it's just going to be amazing for all of us. Though at my peak I was eleven! I wanna really see what I can do as an adult with no ME albatross around my neck Sweet dreams.

Not contributed much to the thread today, been doing other jobs including making an imaginary pizza with my niece and then imaginary honey on toast which we got for Pooh Bear from bees we drew on the chalk board

I was also thinking about low cost PR techniques like Twitter, that might be another way of connecting the CFS/ME community interntionally too. Facebook is another one, maybe cheaper than a website and easier to spread the word too.

 

[gracenote]

how amazing we are right now

A force to be reconned with indeed! Imagine us all coming back into school or the workplace if there are soon treatments be it for XMRV or gene expression, with us having learnt the importance or making the most of every ounce of energy and knowing how precious life is, it's just going to be amazing for all of us. Though at my peak I was eleven! I wanna really see what I can do as an adult with no ME albatross around my neck Sweet dreams.

Not contributed much to the thread today, been doing other jobs including making an imaginary pizza with my niece and then imaginary honey on toast which we got for Pooh Bear from bees we drew on the chalk board

Hi Katie,

Love your ability to play with your niece. I think some of my best healing times are when I'm doing the job of playing with my grandsons. It very much takes me out of my self. And the shared play is priceless for all of us.

I think imaginary pizza making and honey on toast-ing are pretty great examples of important "jobs" and how amazing you are right now having learned "how precious life is."

I hope when we're all physically better we remember how to value these kinds of things as well. And I hope we all can appreciate

How amazing we are right now.​

 

[Katie]

Hi Katie,

Love your ability to play with your niece. I think some of my best healing times are when I'm doing the job of playing with my grandsons. It very much takes me out of my self. And the shared play is priceless for all of us.

I think imaginary pizza making and honey on toast-ing are pretty great examples of important "jobs" and how amazing you are right now having learned "how precious life is."

I hope when we're all physically better we remember how to value these kinds of things as well. And I hope we all can appreciate

How amazing we are right now.​

I have mastered the art of sitting down playing since I was an aunt at 12 It sucks that my nephew and two nieces have never known me without this DD but it doesn't trouble them one bit. Playing with the young of the clan is never energy wasted, it fills the spirit with energy even if your body's is completely spent!

How amazing are we right now is just the perfect sentiment to embrace who we are, regardless of ME/CFS/FM/Sheerrubbishness, we are bloomin' fantastic folk

 

[Dr. Yes]

@ the post above by charityfundraiser..

Unfortunately I have to agree.. what I have heard in the last few months is astonishing -- the number of people on FM/CFS boards talking about those illnesses showing up (being diagnosed, too) within families (not just vertically) is disturbing. Adding in the reports on health care workers developing ME/CFS after contact with PWCs, and the prior large cluster and continued reports of small cluster outbreaks where the mode of transmission is almost certainly interpersonal, I think objective analysis (not to mention experience) strongly suggests that there is a contagious aspect to ME/CFS as well.

I'm not arguing to make that a campaign point just now, however.

About XMRV transmission by saliva...Anecdotally: one of my father's colleagues, a pathologist in HIV research, had apparently found high concentrations of HIV in the salivary glands of at least one patient. That was a long time ago, and I haven't heard any reports of HIV being transmitted via saliva, and I know the general opinion is still that it cannot be.

 

[cinderkeys]

(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!")

Ha! I'm going to have to use that at some point.

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...

That it's a mouthful is also a benefit. When I say someone has myalgic encephalomyelitis, people's eyes get big and they ask, "What's THAT?" It impresses them. And they skip over the part where they think, "I get tired too."

I never really got the "all about ME" vibe, but I'm not a casual, unbiased observer, so not sure how it would come across to someone who is. The one thing wrong with ME is, you can't do a web search on it. That's one of the reasons I've defaulted to ME/CFS in my own blog.

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

No, I don't have ME/CFIDS/CFS/XAND. I know someone who does.

 

[starryeyes]

Katie's Avatar
Bovine Scatology Phd.

lol!!! That is hilarious! It took my fogged brain a bit to figure that out.

 

[fresh_eyes]

Hi guys, came by for a quick check-in.

@mvwu - Thank you so very much for your enthusiasm and kind words. It's great to hear & means a lot to me.

@cinder - That's awesome that you are taking such an interest in the disease - your friend is lucky to have you.

Take care, everyone, I'm off to (paid) work - yay!

ps I posted a concept & design for an award for our heroes over on the Roll of Honour thread - give it a look if you're interested.

 

[anne_likes_red]

Film maker Christina Marie

www.thechristinamarie.com posted this message on the WPI facebook page a few hours ago:

"You have my services as a Filmmaker. Tell me what you want to say & I will have the crew go to the ends of the earth with us. It is time to find a cure!"

It's not clear if she's made the offer to WPI or to the ME/CFS community at large but it may be worth someone contacting her - I believe she's in Sacramento CA.

 

[fresh_eyes]

Hi Re-Branders! I am a bit out of the action these days - all the excitement here plus a bit of paid work and...you know the rest. But I wanted to let you know that I am working on assembling a simple site for CFS OUT, which will include images & slogans from here, free downloads, some stuff to buy (t-shirts, bumper stickers), and the "Superheroes of CFS" awards, as well as basic CFS info. Also lots of links and resources for digital activism re CFS. Should have it up in a couple weeks. I hope to make it kind of fun and not boring/dreary, as part of the re-branding effort. If you guys come across anyone using social media / web 2.0 for CFS activism, let me know - along the lines of the Google Map (which I hope to include).

 

[leelaplay]

ai yai yai

fresh eyes, you floor me (or is that couch me?). I see lots of amazing action. Please do take care of you.

The CFS OUT stuff sounds wonderful. How would we do stuff to buy? Where would the money go to? Do we need pay-pal? Do we need to start a non-profit? .......and all those other questions.

Hi Re-Branders! I am a bit out of the action these days - all the excitement here plus a bit of paid work and...you know the rest. But I wanted to let you know that I am working on assembling a simple site for CFS OUT, which will include images & slogans from here, free downloads, some stuff to buy (t-shirts, bumper stickers), and the "Superheroes of CFS" awards, as well as basic CFS info. Also lots of links and resources for digital activism re CFS. Should have it up in a couple weeks. I hope to make it kind of fun and not boring/dreary, as part of the re-branding effort. If you guys come across anyone using social media / web 2.0 for CFS activism, let me know - along the lines of the Google Map (which I hope to include).

 

[fresh_eyes]

The CFS OUT stuff sounds wonderful. How would we do stuff to buy? Where would the money go to? Do we need pay-pal? Do we need to start a non-profit? .......and all those other questions.

Hi IF - Thanks for your concern. I'm doing my best to take care of myself, though it's not always easy when I'm so fired up! I'm sure you know what I mean. I'm trying to at least limit my posting time.

Starting a nonprofit is a pretty huge undertaking, and not really necessary unless you want to be able to accept tax-deductible donations. I was picturing the merch being sold at cost, and people could buy it online directly from the printer. If we wanted to sell it at a profit, I'd like that to go to Phoenix Rising, I think - this forum is such an incredible resource.

Shall we set up XMRV Global Action merch as well?

 

[starcycle]

Those graphics are great.

I put my latest idea in my sig: "Exercise won't kill a virus." I figure first hit them with something that almost no one would argue with.

Then when they start asking about the virus, you can go into XMRV, explaining that it's a retrovirus like HIV, and would anyone suggest exercise can cure AIDS?

I haven't tried it yet on a doctor, but even though they have undoubtedly heard of XMRV by now I would expect to get some resistance. In that case, I plan to say, "okay, then you don't have a problem with me stopping off to give blood on the way home -- blood that you or even your children might get?"

If XMRV isn't a problem, and CFS can be "treated" with just CBT or GET, then they shouldn't mind getting the virus, right?

 

[Dr. Yes]

None of mine had, that's for sure. I had to tell 'em myself -- and they did not seem interested, either (even one who sees lots of CFIDS patients).

I'm afraid many of us are giving medical professionals too much credit. My experience is that patients take them more seriously than they take patients. Most of them don't know a hypothesis from a theory (though that is sadly true of many 'medical researchers', too).

 

[Advocate]

Most of them don't know a hypothesis from a theory (though that is sadly true of many medical researchers', too).

I don't know the difference either. Can you tell me, so I won't have to google? Does the hypothesis come first, then a theory after the hypothesis is tested?

 

[Dr. Yes]

For Advocate

Whoops - I didn't mean to start a philosophical discussion! I only meant that many doctors (and medical researchers.. and even other scientists too, shamefully) don't truly understand science. In fact, many doctors and even researchers treat mere speculations as if they were 'theories', and/or if they find a single experiment that seems to verify their speculations they regard them as having been proven and expand them as if they were theories. This leads to endless statements of 'fact' where none really exist, esp. in books or on websites aimed at patients.

But so you don't have to google (which will only lead to contradictory answers anyway), basically: in a broad philosophical definition, a hypothesis is an 'educated guess' to explain an observed event or phenomenon, but which has yet to be proven. A scientific hypothesis is a hypothesis that can be tested by the scientific method. Generally speaking (i.e. except in some unusual contexts, according to certain philosophers), a scientific hypothesis has to be falsifiable to be considered valid. If it cannot be disproven, it is NOT scientific.

A theory is a framework of ideas that explains/ interprets a series of observations or 'facts' (multiply verified observations or hypotheses). A scientific theory also has to be testable and falsifiable by scientific method, and is not really accepted until it has been subjected to tests many, many times by separate researchers. (Hence the inherent flaws in "theories" of psychosomatic illness, and in fact with many psychological "theories" - many or all of their claims cannot be disproved, which is why psychology is often said not to be a 'hard science'. Same problem with the claims of Creation 'science').

In the scientific process a hypothesis always comes before a theory; in fact it comes before an experiment (it is the idea you are testing in an experiment). I guess you could say that from basic observation you form a hypothesis, from hypothesis you get an experiment, from an experiment you get data (and if you get enough data of the same kind you get a 'fact'), and from the interpretation of a number of these data/facts you get a theory.

Hope that made sense, Advocate! Sorry, I get technical and wordy when I'm foggy...

 

[Advocate]

Hope that made sense, Advocate! Sorry, I get technical and wordy when I'm foggy...

Yes, it made sense, and I thank you.