help "re-brand" CFS

[fresh_eyes]

Hi guys. So, in marketing terms, CFS has a branding problem. Our brand is associated with all sorts of horrible things (laziness, malingering, arrrgh don't get me started ). So: if we have a chance to change the public perception of our disease - and I think we do, in light of recent developments and media interest - how do we want it to change? What do we want people to think when they think CFS?

The first thought that comes up for me is the name itself. Lots of tainted brands, like Blackwater and AIG, change their names, which would be A LOT easier, but I'm thinking that an actual name change is probably not in our near future (even if XAND takes off, it might not apply to many in our community who are thus far apparently XMRV-). So how can we rehab the CFS name? For one thing, what if we tried to get away from "Chronic Fatigue Syndrome" and stuck with "CFS"? I mean, much of the public probably doesn't know what MS or ALS or even AIDS stand for...

EDIT: Another thing I keep thinking is that too much of the communication about CFS emphasizes "IT'S REAL!" Honestly, I think we'd be better off talking as if of course it's real. Too much "IT'S REAL!" has got to make people think that maybe it's not.

 

[fresh_eyes]

So, Levi, do you think anything can be done to change public perception (or better yet, policy) re "Reeves Disease" aka CFS?

It seems to me that if XMRV causes *any* cases of CFS, that could provide enough leverage to change the overall public perception to, It's probably caused by some other retrovirus(es) that hasn't been discovered yet.

 

[MEKoan]

Another thing I keep thinking is that too much of the communication about CFS emphasizes "IT'S REAL!" Honestly, I think we'd be better off talking as if of course it's real. Too much "IT'S REAL!" has got to make people think that maybe it's not.

Absolutely. Every time we raise that issue, we raise that issue.

 

[_Kim_]

What do we want people to think when they think CFS?

EDIT: Another thing I keep thinking is that too much of the communication about CFS emphasizes "IT'S REAL!" Honestly, I think we'd be better off talking as if of course it's real. Too much "IT'S REAL!" has got to make people think that maybe it's not.

I am a recently diagnosed patient and can only speak about the unanimously supportive response that I've gotten when I've told people that I have Chronic Fatigue Syndrome. I believe this is because of how I have explained it. I have told everyone in both my personal and professional life about my diagnosis. All that I've received back is compassion, concern, and curiosity. Here's how a typical conversation goes:

Kim, how have you been?

Actually, I've been pretty sick over the past few months. I've been diagnosed with Chronic Fatigue Syndrome, which is a lousy name for a very serious and debilitating neuro-immune disease. It primarily effects my brain and my immune system.

Do you know how we all develop antibodies to the infections that we've had over the course of our lifetime? Well, what happens in Chronic Fatigue Syndrome is that many of these old infections become reactivated. I have reactivated Epstein Barr virus, another herpes family virus HHV-6, and a bacteria-like infection called mycoplasma pneumoniae that has been associated with Gulf War Syndrome. And those are just the infections that my doctor has tested for. There may be others.

The brain problems have been the worst part of it. I have cognitive and sensory problems. I'm probably down 20-30 points on my IQ since this started. I also have developed sensitivities to light, movement, and sound. Anything that is too bright, too fast or too loud is unbearable. Now I know how autistic people feel. Oh, and my normal body temperature now runs between 95 and 96 degrees. Weird, huh?

I have been fortunate to find an infectious disease specialist in Manhattan who is an expert in this field. You know how much I hate going into the city, but there are not many doctors who want to treat this disease. I understand. There's not a definitive way to diagnose it, many patients don't get better, or have relapses if they do.

I am lucky as I have a relatively mild case. There are many patients who are bedridden from this. They have autonomic nervous system problems. They faint or their heart beats a million miles a minute if they stand for too long. And too long might mean just going to the bathroom.

Have you known anyone who has Chronic Fatigue Syndrome?

Why, yes. I have a ______ (neighbor, co-worker, friend, teacher) who has it. And then they go on to tell me the story.

For those that are really curious, I tell them the XMRV story and say that if I had to pick a time in history for getting this diagnosis, it would be now. XMRV has increased public awareness, brought on new research, and most of all, hope for better treatments and diagnosis in the near future.

I am careful not to say that I'm tired, but to say that it's hard for me to do a lot in a day. I have to pace myself.

I am re-branding CFS every time I tell my story. It's a start.

 

[fresh_eyes]

I love what you've written here, Kim. Two lines jump out at me as an excellent basis for ad campaigns:

CFS: A lousy name for a very serious disease.

and

CFS: You know someone who has it.

 

[fresh_eyes]

Heck, yeah, Levi! Wonderful suggestions!

* Lobby for a "Presumption of Sanity" law

* and an "Unexplained Organic Disease" diagnosis

Ad campaign highlighting diseases once though to be psychosomatic, now proven organic (MS, ulcers, narcolepsy...).

Yes, If XMRV pans out, then I think Reeves disease patients and advocates may be able to leapfrog with that accomplishment if they organize and seize the moment. What is needed are "Presumption of sanity" laws and regulations that would force the medical community to create an "unexplained disease" diagnosis, which would be given an ICD-9 classification.

These laws would include a presumption of sanity, and would mandate that with a presumption of sanity, comes the additional rebuttable presumption that unexplained disease is organic, not functional in nature. This is the CFS communities big issue, is it not? Even Joe six-pack is going to "get" a cause/movement labeled "presumption of sanity".

Instead, what I see is the CAA dealing with golden opportunity using butterfingers, CFS leadership in absolute chaos, and the general CFS community dithering and worrying about fragmented small issues, while the golden moment passes by.

How to start? Someone needs to get a politician on board, some laws written, and a lobbyist or two in action. Just writing the law will freak out the big insurers like UNUM, and probably force them into an unwise over-reaction. Then the game is on.

 

[_Kim_]

I love what you've written here, Kim. Two lines jump out at me as an excellent basis for ad campaigns:

CFS: A lousy name for a very serious disease.

I agree fresh_eyes. That's why I say it in the same sentence as "Chronic Fatigue Syndrome" at the start.

CFS: You know someone who has it.

That's the one that I want to stress. I don't know anyone else with CFS. I would have thought that in all the years that I have been in practice as a medical massage therapist that I would have had at least one client with CFS. But no. This patient population is invisible. That's got to stop.

I cannot resume full-time school in the Spring - maybe never. But in order to continue the excellent health insurance that is available to me as a University student, I have to take at least one class. I've re-enrolled for one of the classes that I had to drop this semester. It's a technical writing class for future physicians and the capstone project involves creating a public awareness project or fund raising project that somehow involves healthcare. Naturally, I've already decided that CFS awareness will be my focus and this thread is going to give me some ideas of how I might proceed. Many of the student projects end up getting implemented as they are so well researched, written and presented. I'm taking notes from this thread to give me ideas for my project. Thanks to all.

 

[fresh_eyes]

I say we come out of the closet and wear the CFS label we have.

I was thinking the same thing, cj - a version of "We're here, we're queer, get used to it!"

CFS...It's not what you think.

 

[fresh_eyes]

It's a technical writing class for future physicians and the capstone project involves creating a public awareness project or fund raising project that somehow involves healthcare. Naturally, I've already decided that CFS awareness will be my focus and this thread is going to give me some ideas of how I might proceed. Many of the student projects end up getting implemented as they are so well researched, written and presented.

OMG, Kim!!!! That's so perfect!

 

[_Kim_]

In my mind, it's very much like the gay/lesbian movement. It's easy for a lot of people to hate gays until they find out who they are in their communities and find out they already like these people. I say we come out of the closet and wear the CFS label we have.

Ooooh, oooh, I was gonna say that. I was in the GLBTQ community for many years. Talk about rebranding - they got three extra letters added to their name through activism! (note: I had to turn in my combat boots and membership card when I started dating my boyfriend ) But my experience in that community came during a time when people were coming out of the closet and through their brave willingness to be seen, public opinion was changed (at least here in NJ). In my town, we have many families who have same-sex parents, we have GLBTQ members serving in local government positions, as teachers in our schools, and even as clergy.

The difference between these communities is that the sickest of those with CFS don't have much contact with the outside world. Even if they came out of the CFS closet, who would notice?

I am most concerned right now about the transmission mode and whether I'm infecting people I love.

Me too. Since October 8th, I have not kissed anyone and I used to kiss a lot of those that I love on the lips. I have not had any sex that involved bodily fluids. But I worry about those in the past that I've kissed, had sex with, or passed a joint to. I will be most relieved if I test negative for XMRV or if I test positive, when they can confirm that it is not spread through saliva. It's probably not, but I'm being extra cautious just in case it is.

Incidentally, my ex-girlfriend whom I was with for more than 10 years does have some symptoms. I'm worried.

 

[fresh_eyes]

The difference between these communities is that the sickest of those with CFS don't have much contact with the outside world. Even if they came out of the CFS closet, who would notice?

Maybe that's part of why the condition is so often misunderstood - because we're not out there much to personally represent for it. Hopefully we can figure out more, shall we say, sofa-based forms of protest/coming out.

 

[CJB]

<s>
The difference between these communities is that the sickest of those with CFS don't have much contact with the outside world. Even if they came out of the CFS closet, who would notice?
<s>
.

Very good point. But the awareness that already exists is substantial and I think trying to start building that awareness all over again with a new name may be the wrong approach. And correcting the misconceptions is a responsibility we all have in our sphere of influence, no matter how small.

I can just see the news story where they explain what CFS really is. That's all. Some people will never change their minds, but most people will be informed and hopefully treat those with CFS in their lives with some dignity and respect.

I asked this question on another thread. If people who are HIV positive have AIDS, wouldn't people who are XMRV positive still have CFIDS? I don't know and I'm more than willing to support whatever the community decides. I know one person feels that XMRV+ will just remove you from the CFS definition. That's a legitimate thought too, IMO.

BTW, would someone tell me what "ETA" means here?

 

[_Kim_]

OMG, Kim!!!! That's so perfect!

fresh_eyes...what do you think about this idea: My university is on the same campus as one of the two NJ medical schools. What about an awareness project aimed at the med students? I am also a member of AMSA - a premed "club" - on campus. I don't think public opinion will change until physicians take this seriously. We might not be able to change the minds of those doctors who already have made up their mind about CFS. But if we can get the message out to future doctors, then there will be a new generation of enlightened physicians who won't make the same mistakes as their predecessors have.

 

[MEKoan]

While I am not now, nor have I ever been, anything other than infuriated by the name CFS, we would do well to remember that while the acronym AIDS strikes fear in the hearts of people around the world, it stands for Aquired Immune Deficiency Syndrome which is not so very different from CFIDS.

ETA means Edited To Add

 

[Lily]

we just fade away

and our deaths are not being attributed to CFS - they are being attributed to comorbid conditions and not the root cause. A lot of things would be different if that were not the case.

 

[MEKoan]

fresh_eyes...what do you think about this idea: My university is on the same campus as one of the two NJ medical schools. What about an awareness project aimed at the med students? I am also a member of AMSA - a premed "club" - on campus. I don't think public opinion will change until physicians take this seriously. We might not be able to change the minds of those doctors who already have made up their mind about CFS. But if we can get the message out to future doctors, then there will be a new generation of enlightened physicians who won't make the same mistakes as their predecessors have.

Kim,

You are a secret weapon!

I have a feeling you are going to make a big difference in this endeavour, I really do!

 

[fresh_eyes]

I asked this question on another thread. If people who are HIV positive have AIDS, wouldn't people who are XMRV positive still have CFIDS? I don't know and I'm more than willing to support whatever the community decides. I know one person feels that XMRV+ will just remove you from the CFS definition. That's a legitimate thought too, IMO.

BTW, would someone tell me what "ETA" means here?

Re XMRV, I wouldn't be surprised if the CDC, at least, wants to take XMRV out and leave CFS as-is, so they won't have to admit to being "wrong about CFS". They have a long history of removing anyone with any abnormal tests from their cohort. I think this would be a shame, because I bet that even if we don't all have XMRV, we have something similar, as yet unknown.

 

[fresh_eyes]

and our deaths are not being attributed to CFS - they are being attributed to comorbid conditions and not the root cause. A lot of things would be different if that were not the case.

CFS: Some people die from it.

That would get some people's attention.

 

[MEKoan]

We just fade away
and our deaths are not being attributed to CFS - they are being attributed to comorbid conditions and not the root cause. A lot of things would be different if that were not the case.

I was thinking about branding and images which capture our situation. I was not very successful as so many images can easily be misunderstood. Then I began to think about moving images... and PWCFIDS fading away, disappearing from their lives.

I also thought about photos of people well, then ill, then date of death, to illustrate the point Loldershaw makes.

Loldershaw, are you whispering in my ear?!

 

[MEKoan]

I am also thinking that, in a strange way, "CFIDS" may have been appropriated and should be taken back by the grass roots.

CFIDS may be every bit as useful a name as AIDS when you consider all the factors.