Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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help "re-brand" CFS

Discussion in 'Action Alerts and Advocacy' started by fresh_eyes, Dec 13, 2009.

  1. Countrygirl

    Countrygirl Senior Member

    Brilliant idea!

    I love the idea of the T-shirt with that brilliant slogan! I would wear it to every doctor's appointment. (Generally, doctors here in the UK do not accept that the illness exists - we have a very tough time - to put it mildly!!)

    The last time I saw my doc he asked me when was I going to get a life as I have wasted the last 30 years mostly housebound/bedbound with an (imaginary) illness???!!! Try saying that to someone flaunting that T-shirt. I love it!
  2. Dr. Yes

    Dr. Yes Shame on You

    I wonder how many times each of us has heard that. I know how that feels, Countrygirl. :eek: :mad: I've heard it several times in the last two years alone, here in the States!

    Design's shaping up very nicely, fresh eyes! I still wish we didn't have to call it CFS, though...but ME/CFS would be a hard sell on a T-shirt... ("ME" is still the catchiest, but who'd get it in the US...)
  3. Katie

    Katie Guest

    I think you should be more worried about scaring the little ones, my ten year old niece is absolutely petrified of swine flu because of the scare news reports and when her brother got ill (he's diabetic) she though he had swine flu and was going to die, that is something I would never want to see a child go through.

    Also, we have a culture of ME/CFS being treated badly. Imagine a child getting diagnosed and then driving home past a sign that says it could be fatal with no word from a doctor? That's going to do harm and I know that no one's intention here. Chidlren are so fragile and a child with ME is even more so. Even children have to rule out fatal illness just to get a diagnosis and most of them don't die. What many of them do suffer from is depression, self harm and suicidal thoughts. The emphasis on losing your life but no dying is something that would have resonated with me, I would have thought 'yeah, that's how I feel'. Hearing that I might die on the other hand would have had other consequences.

    I think having the missing people is a fantastic idea, especially as so many are rejected from their families, it would be great to show them a message which asks them personally to pick up the phone or visit and bring them back into your life. The missing person will bring an assumption that someone died and they'll read the message, it doesn't matter if it's not actually about death as long as they get hooked. As for sex I think an image of a missing man and/or woman in bed would be good.

    I like this, As the person fades out maybe there should be a voice over stating what CFS actually IS, or what we know about it. You could put it on Youtube as a focus group test, CTOT/Luminescentfeeling might be able to help with that.

    These are really good points. I think showing the reject some people suffer from families, friends and coworkers is a good idea too.

    I agreewith all this "Takes Lives" resonates with me as a sufferer.

    Right *racks brain* any more thoughts from me... I like the missing people and the 'losing your life' message, I think this reflects the majority ME/CFS experience. I don't like the death stuff, maybe that's because I've never been hospitalised with ME/CFS although I've been bedbound for eight months straight once. Suicide has always been more of an issue in my experience, the loss of your life, identity, support system, finances, education, job, friends, pets, home, partners, children and your self has often led to self hate, self harm, depression.

    I really hope that a decision is taken soon to pursue the loss of life angle and scrap the words relating to fatality so we can address the larger social issues we face in a more focused manner.

    What I haven't said yet is that this is really professional looking work Fresh-eyes, you can see the energy in your work which is something that truely brings joy to me. The missing people thing is inspired and it can be built on in so many ways to highlight how research can bring someone back to their life, how acknowledgement from family can bring someone back a part of their life, and how doctor education... you get the idea.

    Well done everyone for this brainstorm rather than brainfog, we truely are greater than the sum of our parts. :)
  4. charityfundraiser

    charityfundraiser Senior Member

    SF Bay Area
    Connecting it to AIDS..

    Dr. Klimas quote:

    I've never heard of this guy before and don't know what his reputation is but here's
    A quote by a Dr. Marc Loveless:

    Found in the book (searchable) with footnote for source:
    Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome
  5. Countrygirl

    Countrygirl Senior Member

    Royal patronage

    Hi Athene

    Yes, royal patronage is a great idea - it would give us validation. The Duchess of Kent was/is supposed/rumoured to be suffering from M.E.

    My single claim to fame is that I was invited to be 'presented' to her for 'services to the chronically sick' (translation: organising M.E. support groups from bed). She asked me a number of questions about the illness - I assumed she was just being polite - and was very understanding when my legs gave way as I attempted to curtsey and had to be propped up by a peer of the realm (me not the Duchess). I'm sure many aristocratic toes curled when the Duchess gave me permission to sit whilst talking to her. Maybe she understood only too well......Anyway, she is one possibility.
  6. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    Wow! Thanks, in-house focus group! :) I'm going to read carefully over all these wonderful, smart, thoughtful comments and suggestions. This is so great.

    Just off the top of my head, seems like as a group we're leaning toward scary (though the jury's still out on the D-word). I agree with Dr Y and others that the LAST think I want is for it to look like a depression campaign (I hadn't seen the fading/depressed ad...Damn those idea stealers! :)).

    It occurred to me last night when I was falling asleep (that's when I get all my ideas) that we could really emphasize the infectious angle. Now, I know there's been some talk on the forums of not wanting people to think of us as contagious lepers, but that's where people's fear is going to lie, that it's catching. I had the image of the "OUT" in CFSOUT (or OUTCFS?) as a biohazard symbol. Thoughts?

    One other nifty thing about using CFS/OUT is that it could also have a double/triple meaning as a protest against the name CFS, as it get rid of it, while at the same time hopefully rehabbing it a bit.

    Thanks again everybody. You rock, and I'm not just saying that.
  7. Katie

    Katie Guest

    We don't actually know CFS is infectious atm. XMRV can be passed on, we don't know all of the ways how, but CFS may not be infectious. It could be a case that gene expression changes are triggered by an outside cause, be it viral, bacterial or trauma related. I don't think we can risk putting anything out there that we're not certain on, we've had enough disinformation to deal with.

    The trouble with any campaign right now is that we could well be seeing our whole landscape shifting. There are so many question marks that we can only push forward with what is certain, CFS = Organic.

    One other worry, is having CFSOUT with biohazard symbol might come across as an attack on CFSers, like they need to get OUT! Just a thought!

    Let us know the outcome on the D-word, might it even be worth a poll to see if it's something people want to see in a ad representing them?

    Keep up the valiant work fresh-eyes :)
  8. blackbird

    blackbird caged.

    I've got a couple of ideas for some images too, but not using CFS/OUT.

    Rather than then muddle things, do you think this should become a CFS/OUT thread, and I start one for my alternatives, or would it be better to keep all branding ideas here for now, and see what comes of it?

    I know I asked about CFS and where it comes from earlier in the thread, but it still feels odd to use it so directly in a slogan. As far as I'm aware, there's no profile at all for the name CFS here in the UK.
    I'd heard of ME years ago when Clare Francis was on a talk show. She'd sailed round the world single handed, then soon after had got ill. The bit I remember (though it was a long time ago) was that she had to go to bed for a few years to recover (sorry, it's very vague).
    But I'm not sure I'd ever heard the term CFS until I started trying to figure out what was wrong with me and had a trawl on the web.
  9. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    Hi blackbird, for my part I'd like it if you posted your thoughts on this thread - let's throw them in the mix. :)
  10. _Kim_

    _Kim_ Guest

    Hi cinderkeys

    Welcome to the forums. Did you know that you have a thread in your honor? A song about ME/CFS -- Proceeds go to research

    Maybe I got the idea for the phrase from you :)
  11. leelaplay

    leelaplay member

    M E and me???

    The name is a problem in so many ways. So many versions. So many negative connotations.

    Fibromyalgia and other syndromes can drop the syndrome part as doctors tend to read syndrome negatively, as being a cluster of symptoms and not a 'real' disease instead of a disease with cluster of predictable symptoms for which we don't know the cause yet.

    The reason they can drop it is that the first part of the name has some sufficiently technical medical term that is often inaccessible in meaning but sounds 'real' and perhaps frightening and has to be shortened into an acronym to be pronounceable by the general public.

    It's mostly ME in the UK (I like that ME is sufficiently medical terminology, inaccessible in meaning and potentially frightening)

    It's mostly CFS in the US, but also CFIDS
    > I prefer CFIDS as it mentions the immune system. Not sufficiently frightening to my mind, but could be linked with AIDS fairly easily
    >unfortunatley, CFS is the best known and I think needs to be kept for now

    It's ME and CFS and ME/CFS in Canada, and on the Canadian consensus documents which are probably going to be used with most of the xmrv research.

    And the name may change to XAND, or XAND may be a subgroup depending on the xmrv research outcomes

    I have a fuzzy image of doing something in the meantime with ME and CFS

    >with ME being pronounced first as M. E.; myalgic encephalomyletis,

    >then M E and 'me' might be a slogan that could work,

    >and then maybe M E and CFS

    >not sure if 'me' and CFS would work - probably too much of a change without enough payback

    My vote is to use ME/CFS, even if it is a mouthful

  12. gracenote

    gracenote All shall be well . . .

    Santa Rosa, CA

    I don't like "syndrome" either, but then I remember that HIV causes AIDS Acquired Immune Deficiency Syndrome and that makes me think. If XMRV turns out to be causal it, too, causes the immune system to malfunction and result in a "syndrome." Am I right in this? XMRV would open the door to more infection and to activating viruses and other creepy things that may lie dormant in healthy people. Wouldn't we still be "a cluster of predictable symptoms" but now we know the cause?

    On the other hand, XAND means XMRV Associated Neuroimmune Disorder. I like disorder better, but this is too early for us to brand via XMRV.

    I know this doesn't help us with re-branding, and I know I tend to over-think things so I end up going around in circles, so I will go back to the rest of the forum and not say any more until I do . . . say more.
  13. Kati

    Kati Patient in training

    Cinderkeys, I LOVE your song, it is FANTASTIC. I love the feel of it, the rhytm, the emotion, the voice.
  14. cinderkeys


    Thanks, Kim. :) I just wish the donation page still existed. I'd like to do more with this song to help raise awareness/funds, especially now that there's a high-profile research institute to send donations to.
  15. cinderkeys


    Thanks! Of all the songs we've ever recorded, this was the one I needed to get right, so I'm really happy (and relieved) when people who know about the issues like it.
  16. anne_likes_red

    anne_likes_red Senior Member

    It's great.....thanks so much for writing it...and for sharing it!
  17. kurt

    kurt Senior Member

    Syracuse, Utah, USA
    Excellent points Katie. I want to second your comments, put the BRAKES on any thought of a PR campaign at this time saying ME/CFS is contagious. I realize that is the undertone of the whole XMRV finding, but that study has not been confirmed yet, and we REALLY do not want to become stuck with a Leprosy type label if eventually it is found out that either XMRV is not really part of CFS, or XMRV is not even pathogenic to humans. Wait at least ONE YEAR please before even suggesting ME/CFS is related to XMRV in any PR. That is how long it will take for a small body of replication studies to take shape and a consensus to emerge.

    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.

    Athene, This is REALLY a nice set of spin-doctoring thoughts, thanks to your sister for this.

    Rather than emphasize the 'fear of ME/CFS' angle I much prefer this idea of finding strong advocacy. I would rather see someone work the 'shaming' angle on people, if we raise awareness of the pain and suffering, and they start to realize people they know who have ME/CFS are not pretending, and are really, really sick, they will have to deal with their conscience about this. That is where I think we have to go right now because so little is really known about ME/CFS in the public.

    To get help we have to generate sympathy and the feeling in people that they should be helping us. To get that sympathy the public has to be persuaded that our condition is real and the situation for us is very difficult. To be persuaded that our condition is real the public needs to see people who they trust (celebrities perhaps or people in positions of respect) who confirm that ME/CFS is both real and devastating.

    If there is a useful fear angle, I suspect it is to show the story of someone developing ME/CFS, show how they had a healthy, normal life, no mental or physical problems. Anyone could become a victim, regardless of whether they are 'exposed' to someone with ME/CFS. The public should know that and should know that if they join this unhappy society they may wish they had done more to support ME/CFS research back when they had their health. I remember hearing about ME/CFS before I got sick and thinking how awful that would be, I did not want to even think about it, there was just something really scary even about the idea of that kind of suffering. I do think people are already afraid of ME/CFS, maybe because so many people are working themselves to exhaustion, knowing they are pushing themselves too hard to stay afloat or get ahead in the world. Afraid there may be some consequence for that. Even though that probably is an unwarranted fear for most people, it could work to our advantage.
  18. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    Hi y'all. First of all let me say again that you are just amazing. I don't have the brainpower right now to express it properly, but I am truly astounded.

    Sadly my lack of brainpower is also making it hard for me to give everything that's been said its due, but I'll go ahead and make a start.

    First: cinderkeys - heck, yeah!!! What a powerful and beautiful song. I KNOW we'll find a use for it. Welcome aboard!

    Second: It seems to me that the fundamental question at hand is whether to bring up the possibilities of a) infection, and b) death. I totally agree that we don't want to say anything that is factually untrue or will later be proven false. But isn't the whole point of this campaign, right now, to get the public on board with helping answer these questions? *Is* it contagious? *Can* it be fatal? That's why we need research, RIGHT NOW, and that's why we need money for research, RIGHT NOW. (And if we want "CFS" to ride XMRV's coattails should it pan out for some but not all of us, we need to draw the CFS+XMRV connection NOW). And the more I think about it, the more I'm in agreement with those who would like to see less window-gazing and forehead-rubbing and fading and trying to get sympathy, and more scariness.

    With that in mind, I tried a couple more text/graphics:



    Let me know what you think.

    Also I'm considering changing the text on the poster graphic from "takes people out of their lives" to "takes lives", and a bit more scary-looking. Comments?

    Which brings us to what, exactly, we want people to know about CFS right now. The briefest summary, if we only had their attention for 30 seconds. Thoughts? Would any writers among us like to volunteer to draft that?

    And from there, the big question is, once we have them on our side, what do we want them to do. Donate to WPI?

    Once we've hammered out some clear consensus, it would not take a huge amount of work to get this up as a basic web site with some very concise text and a couple of links. There could be downloadable graphics, say to use as an avatar or post on a blog, and maybe t-shirts to order. Rather than trying to take on all the facets of all the issues at once, I'd like to try to take something simple to completion and go from there.

    It's time for CFS to ACT UP. (Get it? Get it? :)) You're all amazing. Rock on.
  19. MEKoan

    MEKoan Senior Member

    I think your graphics are really stunning!

    What do you think of "find out" instead of "let's find out" ?

    I see where you're going with research and "let's find out" but I don't think people think it's a very pressing question worthy of money.

    However, they may be intrigued by a potential answer to those questions - which, phrased as you have phrased them, can be answered, just not definitively - and then discover that research is necessary because there may be people dying of a scary contagious virus. And, we should really be checking that out ASAP!

    But, first, you just get them with curiosity and cool graphics and the tease that the answer may be simple.

    Of course, we know it's not but they don't know how interesting the complex answer is.

    Sorry I'm kinda leaking these comments but I am toast.

    Great work! I'm so impressed on every level.

    PS What does the first one look like with only "or just lose their lives?" in red? Or "die" and "or just lose their lives?"
  20. fresh_eyes

    fresh_eyes happy to be here

    mountains of north carolina
    Thanks, K. :) I was also thinking about "or just lose their lives" in red.

    A couple more thoughts. I like everyone's suggestions on the "Missing People" images. I'd love to do something with "tough" people, like firefighters. Active people, athletes. Also "powerful" people, maybe a politician, a doctor, a judge...More ideas?

    Also it would be fantastic to get celebrities (or even royals!) on board. I thought of a few, from different spheres:

    Flea, from the band Red Hot Chili Peppers ("Cool people get it.")
    Laura Hillenbrand ("Smart people get it.")
    Michelle Akers, US Women's Soccer ("Physically impressive people get it.")
    Pema Chodron ("Even enlightened people get it!")

    Does anybody have any contacts there?

    In the mean time, we can use images that give the *impression* of celebrities, or at least of important, interesting, accomplished people. That's sort of where I was going with the on-stage picture.

    OK, enough. 'Night all.

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