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help "re-brand" CFS

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

  1. Mark

    Mark Acting CEO

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    I'm posting on this brilliant thread at last! There's been so much wonderful stuff going on here, and I missed the earlier part of the discussion, but I want you all to know how much I've been enjoying it. I think I agree with Kurt's conclusion, but for different reasons.

    - I don't think it's going to take as long as a year for the consensus to emerge, and it'll take even less for us clued-up PWCs to be very confident about the findings. Several studies are due to report in about 6 months, no? Even one more independent confirmation, and a few more technical details from the WPI's unpublished research (they must have some massive stuff up their sleeves), will be good enough for me. Actually, it's already good enough for me. But I take the point that none of the details are clear yet; all it definitively proves is that CFS is real and physical.

    - If you want to establish credibility as a new organisation in the public mind, then sticking your neck out and predicting a load of science a year before it hits the public consciousness seems to me a pretty good way of establishing your credibility with the public - once the news comes out officially and proves you right. Until it does come out officially, you'll be told you're jumping the gun. But once it does come out, a lot of people will remember where they heard it first; the next thing that group says, they will listen to carefully.

    - Hoever: when the XMRV studies are confirmed, there will be no special need for the XMRV+ to campaign anyway: the science will do its thing for them. It's those left behind who will need a campaign - more so than ever. The ratio of shrinks to sick people will go through the roof!

    So from the above, I think the campaign that makes sense to me over the next year is to aim to communicate the following:

    - CFS is a serious and debilitating illness and destroys lives.
    (noting comparison with MS, late-stage AIDS)
    - CFS is a physical illness, not a psychological condition.
    - CFS is still in the hands of psychologists (in the UK at least).
    - CFS has not been taken seriously by science, govt or society.
    - CFS research and care has been grossly under-funded.
    - In particular, there has never been any publicly-funded medical research into CFS in US/UK. (perhaps somebody can clarify that into a broader and also more accurate statement, I have read there has been none since 1991 at least).

    I think those would be the main messages from my point of view.

    I'm torn on whether it's a good idea to try to publicise XMRV. I rather feel it's the best tool we've ever had for getting people to take us seriously, and I also feel that other CFS patients have the right to know about it - I'd suggest an estimate that maybe half the people in the UK with CFS have still not even heard of XMRV's existence. They deserve that hope, and the public needs time to start persuading themselves that they believed it was a virus all along.

    But the campaigning should ideally focus on the needs of the group seemingly in the greater long-term danger: those with CFS who are XMRV-. So XMRV-related messages aren't the point for those people: general points like "CFS is a real physical illness" are more important for them. It's entirely possible that subgroups of CFS-related conditions in various parts of the world have a different, undiscovered retrovirus to explain their illness.

    Final point: I'm labelling myself as an ideopath just at the moment for a reason: I think the most important themes we feel passionately and angrily about apply almost as much, if not just as much, to other people with chronic ideopathic conditions. IBS, MCS, GWS, and even a lot of people with completely different conditions of unknown cause, I suspect we all live together in the same waste-basket, and I suspect we all of us have XMRV. IBS, for example, is also considered to be a somewhat psychological condition, and a female problem. The labels CFS, IBS, MCS are almost meaningless. The fundamental shared injustice lies in having a condition that is poorly understood, not medically diagnosable, not treatable, or completely unknown. The way society deals with that scenario is the basic problem.

    In the early days of my illness, when I knew nothing about the landscape and when doctors started saying "those symptoms are truly bizarre", "this fits no known pattern" and "this is medically impossible", I naively thought: "This is good news for me in the long run. I'm so medically unusual, such an exceptional case, that researchers will be falling over themselves to study me and find out some exciting new science that could unlock other mysteries. Sooner or later, I'm going to get to some specialist centre for unknown conditions, and then I'll get some really top-notch help". How ridiculous does all that sound?! Naive is not a strong enough word! It never occurred to me they would decide instead to ignore me and assume I was just making it all up or imagining it! But I still think the model I imagined is what ought to happen, so it's what I would personally want to campaign for. If people have been sick for a very long time, and there are lots of them, they should be studied intensively; that group should receive the most focus, not the least, for all kinds of obvious reasons. Apart from anything else, it's in the majority's interest to keep a close eye on those who are suffering strange new illnesses. Before a retrovirus spreads to 4% of the population...
  2. Mark

    Mark Acting CEO

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    While I'm sat here waffling, fresh eyes is getting on with it! I love this stuff!

    Re: Koan's point about "Let's find out", I see it but I think "Let's find out" has a better ring to it than just "Find out". How about "Find Out NOW"? Still the nice three syllables, but perhaps ambiguous as to whether you're going to be providing the info NOW or campaigning for research NOW.

    Re: the website, that's an awesome plan, the whole thing can potentially happen really quickly at this rate of progress! Perhaps I'm getting ahead of myself, but do you see it as providing information distilled from this site? I think there's a real need for well-collated summaries of what people on this site understand. Q and A on XMRV that goes beyond the cautious statements of scientists. Passionate patient testimonies by the bucketload. Clear, referenced case against the psychologisers. etc etc.

    Re: CFSOut - the name seems to have stuck, I think it's brilliant. One thing that would fit very well with it, and with themes of my post and things others have said, is: you could make it a central campaign goal to say: Enough of this label, we want it gone for good. If half of us really have XMRV, the other half need a new label too, because CFS was obviously nonsense if so. An end to CFS!
  3. Samuel

    Samuel Bedbound with NO DOCTOR

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    I like this one.

    I think I would leave in the "let's find out", because if you tell people to find out, they will go to Wikipedia or CDC or some other denialist site. Oh, it's controversial. Oh, it's psychological.

    Our goal here is IMO more to prime people, including decision makers, that they have to take it seriously if they see the term again.

    And to raise the awareness of people who are sick but not politically aware.

    I actually don't think it is what we want right now to get the general public to find out more -- in this case. (Except for college activists, human rights workers, and other natural political activists (our staunch allies-to-be, as happened with HIV/AIDS) willing to invest a lot of time, and those are best reached through networks instead of ads.)

    I have concerns about "CFS". I think we need to know what we are doing here and examine all angles.
  4. starryeyes

    starryeyes Senior Member

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    Wowee!! I am thrilled with this thread and all of you creative, intelligent people. :) I love the ideas --- the ads of missing people are great-- who cares if its been done for Fibro? It still fits the trend and CFS and FMS are closely related so if anything that's just the kind of reinforcement we need.

    I love the Ads too! I went back and saw the red and I like it. :) I wanna make bumper stickers too. Fresh eyes and others what do you think of that? I think it's good for us all to brainstorm ads and other modes of communication. I was under the impression that we could make several ads etc...

    These are some of my ideas:


    and thanks to Cinder:


    I like the name ME/CFIDS. It shows the seriousness of our illness.


    WELCOME TO PHOENIX RISING CINDERKEYS!!
    It's great to see you here and thank you so much for advocating for us and writing and performing that awesome song about ME.

    As someone mentioned before, do we want to say outcfs.com or cfsout.com? Starting with CFS is easier to link to the illness but we really want to out CFS. Who was it that said that? Are we thinking along the same lines?


    Click Here for Cinderkey's Song: Everybody Knows About ME

    tee
  5. Dr. Yes

    Dr. Yes Shame on You

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    Fresh eyes - Flea has CFS?? I hadn't heard that...If he does, he could be a good spokesperson (if he's calmed down a bit..); he's not exactly a newsworthy celeb anymore, but he himself has plenty of contacts...

    Second of all..umm...is it just me or does the slogan "Is it contagious?- Let's find out" sound a bit like a dirty joke? Seriously... or just a bad joke... I think for that one the "find out" or "find out now" options might be better? If I saw it that way, twisted as I am, I know a lot of folks who will too...:eek:

    I was still wondering about legitimizing the name "CFS", though not sure whether ME/CFS can be incorporated in a memorable way (such as "ME/CFS-OUT"...too hard to read or remember, I guess.. and Mark's point is a good one:
    The only problem is that CFS would be emblazoned everywhere in the slogans, and that's what would stick.. How do we convey the idea that the name sucks in a simple, first-level awareness campaign, without enhancing the confusion?

    I also wanted to point out something from my recent experience which differs from what I think some others on this forum are assuming... A great deal more people have NEVER heard of CFS, let alone XMRV, than one would hope. Over here, I haven't met a SINGLE nurse's aide or fellow resident who has heard of it, and if the nurses know about it, they certainly don't act like they do.

    Younger people (20's or less) haven't heard of it because it was only a matter of media attention in the 80's (far less in the early 90's). The recent stories about XMRV - if they saw them - must seem like a jumble to them (and others) of terms like 'chronic-something', cancer, retro-something-virus, and 'maybe contagious'. Nobody hear has heard of XMRV..

    My rheumatologist here, who treats CFIDS patients, as he calls them, and was recommended by a local fibro/CFIDS support group, hadn't heard of it six weeks ago. When I saw him last week, he still hadn't heard of it nor looked into it (he 'promises' he will now). My point is that an awareness campaign is therefore very important, but we may not be able to take it beyond basic information; I don't know that we can immediately bring up issues that assume people have really even heard of CFS. Simple awareness of CFS on our terms may have to be good enough for now.

    A strategy of informing the medical community is important; supposedly we have groups doing that for us (incl. the IACFS/ME) but they've made no impact, nor have the CDC's or the CAA's (see Dr. Ken Friedman's disturbing testimony at the CFSAC on YouTube or elsewhere). The CAA offers brochures to give to your doctor that are no better than the CDC info, and promote GET and CBT as successful treatments. Plus, most doctors aren't interested in any further 'education'...

    Dr. Friedman urged the CFSAC, NIH and others to actively change that situation by insisting that medical schools include ME/CFS in their teaching curricula (currently it is not, in ANY US medical school, according to Friedman). Similarly, informing local and state officials can't hurt either. I wonder if any campaign we cook up that involves a website can eventually target the medical schools, doctors and politicians, as well.

    Mark brought up the idea of fighting the "psychosomatic" label in direct ads (I think); that made me mess around briefly with slogans like "CFS - It may be in your genes. But it's not in your head", but then figured it would be better not to legitimize the psych argument by allowing them into the debate -- except maybe in the UK, where the shrinks obviously hold sway (IBS is considered psychogenic in the UK?)...but in the U.S. I don't think it would be a good idea.

    Anyway, just some drowsy thoughts...:confused:
  6. Mark

    Mark Acting CEO

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    It's quite true, if it doesn't pan out, if there's some fundamental flaw in it all, we will be pretty much done for. All the researchers who've stuck their necks out will be done for too.

    But I just can't see how it can not pan out. I still haven't seen a feasible scenario to explain how the research could be wrong (and yes, I've read some lists of possible problems, none of which look remotely plausible to me, nearly all of which have already been debunked). I can't see or think of a way to explain 95% vs 4% in multiple blood tests for a retrovirus, replicated by 3 separate labs, that doesn't involve conscious deception on the part of the researchers. And I can't see any way how that could be the case, it would be a monstrous and pointless conspiracy to deceive the CFS world that way. I understand that causality and transmission are not yet proved, but a physical basis for CFS is, in my opinion. Verification by other labs is really about one thing only: confirming that the WPI didn't just make the whole thing up. Which they can't have done, because they would know full well the consequences if they did.

    So if replication fails on a mass scale, I for one have already made up my mind that would mean conspiracy. Even if it all falls out that way, I'm not changing my attitude that I'm physically ill not mentally ill, not for anyone. The mere concept of a definitive physical explanation, and the hope of public acceptance of that fact, made me feel psychologically whole again. Something just clicked back into place in my mind and I knew who I was again. The last scintilla of doubt just rode out of town.

    I understand the fears from people who've been here and seen it all before and been let down. But for me, all those other false dawns never happened, because they never reached this point, nothing like it. Nobody I know is even aware of the existence of those false dawns, even now. This is something very different. It's the beginning of the truth about CFS, and I for one have no problem whatsoever with sticking my neck out and saying that.
  7. Samuel

    Samuel Bedbound with NO DOCTOR

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    Please somebody tell me that this is not true.
  8. dannybex

    dannybex Senior Member

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    Perfection.

    Seriously. A group of 25 overpaid ad execs couldn't have done a better job.

    It's a keeper.

    Thanks Freshy!

    d.
  9. starryeyes

    starryeyes Senior Member

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    It's true alright. I'd completely forgotten they say this in their brochures. Thank you for reminding me Dr. Yes. I had ordered a bunch to hand out to people who yell at me when I park in the Handicap Zones because these are the only brochures about CFS that I know of.
  10. Katie

    Katie Guest

    Yes. I like these. Very much.


    Takes lives is great. I think I heard on the UK Apprentice once that research found people won't read more than nine or ten words on a poster, that might be useful to you.

    I think we'll know more about what we want to communicate in six months, we need to know what's XAND and what's CFS. What we can capitalise on is the 'new era' message and be fast and adaptive, maybe even beating out the established groups. Serving the post-XMRV era is going to be the calling of choice. Depend on if it pans out... blah, blah, blah, you know the sensible disclaimer on all this theoretical stuff!

    WPI could be once choice, over here we have the Ramsay Research Fund that funds only biomedical research into ME/CFS but we'll have to see what direction they take post-XMRV. What I think would be a good idea is to have a list of orgs and research institutes etc. and create a pool of money through CFSOUT.com and then each financial year dole out awards and grants internationally with complete transparency. I don't know how this works but if you achieved charity status there's a shed load of tax breaks to have and brilliant online methods for people to donate.

    I think it's a really good thing to think simple and build on that. I'm sure as you get more people wanting to contribute you can build from there especially when it comes to further merchandising. You could ask Dr Donnica if she would like to contribute an 'advice to ME/CFSers' page or something along those lines too. Ok, how's this for basic thoughts.

    Things you definately needs:
    - CFSOUT aims and goals on the front page
    - Lots of easy to understand info broken down into, 1. History and myths 2. Science, what is it? What do we know so far? 3. People, how it effects them 4. What needs to change
    - What's going on in international research
    - Help the campaign for free, download graphics, banners, send e-cards, print off a poster for your school, office or doctors surgery
    - Help the campaign with money, donate or but t-shirts, cards and mousemats
    - Link to song ;)

    Things that would be good for future:
    - Dr Donnica maybe, if she was willing, she's got a lot on her plate but she's a great name to have on board
    - CFSOUT bloggers and vloggers - get to know the team
    - Interviews
    - Activism awareness - get involved and get CFSOUTed!
    - Contact us - got an idea to get us OUT there? Let us know!
    - Write to your representative, congressman, MP etc.


    There's loads more ideas for people to build on, interactivity and communication with our people will be key. Get people excited!

    Rock on indeed :D
  11. starryeyes

    starryeyes Senior Member

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    [​IMG]


    This one makes me nervous. I think it could backfire on us. Keep in mind how people reacted to AIDS patients.
  12. Katie

    Katie Guest

    That's very true, it's such a fine line to tread.
  13. txfriend

    txfriend

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    Hello, all...

    Funny name for a serious illness! That's a good one, but one
    of our support group leaders had tee-shirts made up
    with "Chronic Fatigue Syndrome: Silly Name, Serious Illness" on
    them. We wore them to health fairs and passed out literature
    and showed a video about CFS. The tees were a big hit, and
    we donated the profit from them to the CAA, of all places...well,
    it was the only place back then!

    They were either blue with white lettering or hot pink with
    white...very eye catching and my SO wears her's all the
    time, still...and this was 14 years ago. They get people
    asking about CFS, which is the whole point.
  14. fresh_eyes

    fresh_eyes happy to be here

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    mountains of north carolina

    [​IMG][/IMG]


    :D
  15. fresh_eyes

    fresh_eyes happy to be here

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    I had not seen those CAA brochures, and I'm just...well, never mind. I'm tired of complaining about CAA. Suffice it to say, let's put creating a brochure high on the priority list.

    O, Writers! Who wants to get started on brochure text?

    EDIT: I see Teej is way ahead of me here and has started another thread. I'd be happy to do the design, if we as a group come up with the content.
  16. froufox

    froufox Senior Member

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    Great ideas everyone and Fresh Eyes I love your posters!! I really like the design and the colours you've used. I agree that the contagious one it might not work in our favour but I love the CFS Sucks and Do People Die ones, they're brilliant.

    Thanks a lot for making the effort! :)
  17. Dr. Yes

    Dr. Yes Shame on You

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    Genius is simplicity

    Ladies and gentlemen, Fresh eyes! (CHEERS/APPLAUSE)

    :D:D:D
  18. fresh_eyes

    fresh_eyes happy to be here

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    *bows and waves, blushing*
  19. fresh_eyes

    fresh_eyes happy to be here

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    Thank you, froufox and Athene!
  20. Koan

    Koan Be the change.

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    Alliterative and punchy - two very good things - and to the point!

    Would there be a problem using it, Txfriend?

    ETA Or: Stupid Name, Serious Illness. But, I almost like "Silly" better as it trivializes the name while emphasizing the seriousness of the illness. You know: we dismiss this silly name.

    Also "Stupid" has a lot of stops in it while silly just rolls on into serious illness.

    (I just spelled "illness", "Illnous" - take all I say with a salt lick.)

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