Why we need to think of public concern first, and our concerns second.

We need Public Relations. That is going to be true today, tomorrow, and the day after the NIH study is published. Yes, it will get covered by the media. But then the study will fade away and the media will stop covering it. They will stop covering it because patients don't make any news for them to cover. The NIH study does not mean the messages we want to convey to the public will get there.

Public Relations for our disease is needed. It will be needed after the NIH study is published and after all subsequent  rumored positive papers are published. However, just because we have a message to give to the public does not mean they want to hear it.

If we want the public to hear us then we need to tell the public what matters to them, not what matters to us. This is what will make the public care what matters to us. 

 What matters to the public is what is newsworthy, and what affects their family, friends and neighbors. How can we ever hope to win the public to our side if we are only interested in talking about ourselves?

We can hook the public with several newsworthy facts that are about them. That is how we make the public care. Journalists care about newsworthy facts. Politicians care about what effects their polls, and their support from the public. The public cares about what influences their life, and the lives of their family and friends.

Here are some of those issues the public is going to care about:

1. CFS and its link to XMRV
2. How many healthy people may be walking around carrying XMRV (4% of the population, possibly 7% of the population if we go by the Alter slide)
3. Three countries have taken the precautionary measure of banning people with CFS from donating blood, but the U.S. has not. While a lot about XMRV is unknown, just as a precaution, the blood supply needs to be protected.

Now these things don't say anything about patient care,  problems with the CDC website,  problems with our name and diagnostic criteria.  Those are our concerns, and they are valid concerns.. But they cannot be addressed all at once, and nor will a public listen to it if they don't understand in the first place why it matters to them too.

In addressing the public, we must think first and foremost about their concern, rather than our own. We need to make ME/CFS matter to every part of society.  We can't do that while we're telling the public only what concerns us.

To illustrate my point, I would like you to think of this scenario. You turn on the tv, and there is an ad about purple disease. You've never heard of purple disease before. The commercial tells you there has been a fight about the name of purple disease, some want to call it blue, others yellow. Patients with purple disease want lots of things. They want recognition. They want help. They want money for research. They want drugs to fight purple disease.

How fast would you switch the channel? How does the fight about purple disease affect you? Do you care about purple disease research based on this ad? What does purple disease have to do with you and your family?  Why would you give a dollar or lift your finger during your busy life for something that does not touch your life in any way at all?

Now imagine a different scenario. You turn on the tv, and there is an ad for purple disease. You've never heard of purple disease before.  The commercial disease tells you what purple disease is, and that it's been highly associated with an infectious disease. You hear other countries are taking action to make sure that the public is not exposed to this disease through the blood supply.  You are told how many people may be carrying this infectious disease. You are told about outbreaks and stories about blood transfusions where people developed purple disease shortly after.  At the end of the commercial you are asked to go to a website to donate and learn more about purple disease.

Do you care about purple disease now? Do you see and feel how purple disease could affect your family without ever actually using the literal words? Without being told all the issues that concern patients, does it now concern you? And now that you're concerned that purple disease is a serious thing what are you going to do?  Hopefully, you are saying "yes, yes." and nodding as you read this. 

Yes, we need the public to care about us. We need the public to be on our side. We need the public to run for us, walk for us, donate to research, write letters to the government on our behalf. We need politicians to move mountains.

Please ask yourself, why would the public care about our concerns if we are not putting the concerns of the public first?

We only have seconds to reach the public, before they turn the page, before they turn the channel. We live in the age of the soundbyte. Where words and entire sentences are reduced to letters.  How fast do you stop looking at things that have nothing to do with you? How quick do you tune out from messages that are not thinking about your needs, or your life?

To get the public to care about us, we have to talk about their concerns as it relates to us first.

Those concerns are XMRV and the blood supply. 


  1. love it, Andrea! thank you!

  2. Couldn't have said it better myself. Thanks, Andrea. x

  3. Andrea, I agree with this. Now that you've done the hard work :-) it prompts me to suggest something that I've thought about a lot. I think there are two messaging targets that are essential for impact.

    The first is that ME/CFS can make you sick, Very, very sick. We know this. But it is missing from the public's perception. What they need to see is images, not of the ME/CFS patients that can still get out occassionally, and look fine. (And will probably crash afterwards which they won't see). They need to see images of the bedbound. Those with feeding tubes. In wheelchairs. In darkened rooms with earplugs and eyeshades, unable to talk to anyone. This, of course only about a quarter of patients but all patients have the potential to go this way. The public need to see these images.

    The second is they need to see suddenness of the change. The public perception is that those with ME/CFS are probably sickly anyway. Maybe losers who didn't do much anyway. Then they got this "CFS" on top of it. What they need to see is the scale of shock of an interrupted life. And how sudden it is. And how energetic people are before the get sick. eg. that UK patient who's
    doctoral thesis is still half-written after 7 years - because after catching a "flu" he couldn't finish it. The marathon runner that caught "flu", never recovered and has never been able to run since. etc.

    The impact needs to be emotional to voercome the pre-conceptions. Otherwise people think they understand but are actually thinking of their own concept of ME/CFS. They need a something confronting (like a picture of bedbound feeding tube patient) to break through that. Other than my general comments above I'll leave it to the experts.

    Peter W
    Melbourne, Australia

  4. Yes yes (nodding & clapping!)!!! Gr8 post, thank you. Xxx

  5. There is a caring sector of the public that give blood to the NHS Transfusion. Contacting this group via facebook webpages may be a start in informing the general public who may be unaware that they may be passing on a potentially devasting disease that can adversely affect them their families and those that receive their contaminted blood! If they want to learn more give them the info.

  6. On the not-so-serious side, I'm too tired to give up one single drop of blood. It has things I need, like capacity to carry oxygen that might actually get to a bunch of cells at once & result in the ability to take a shower before they cordon off my place & call in a decontamination unit, for example. And I can't anyway, notwithstanding ME/CFS, because of exposure to "Mad Cow" when I lived in Scotland for 3 1/2 yr. in the 80s. Plus, there's the exposure to Chernobyl radiation...so I won't get senile, I'll moo crazily & glow in the dark! But I won't be allowed to donate blood or organs.

    Getting serious, now, there's a lot of good info here, & Andrea's started the ball rolling, Peter has picked it up & carried it further (hopefully not getting a flare up afterwards!) Now, the main challenge is getting the energy to do it. I agree that life interrupted is what people need to see. They need to be asking, if they or someone for whom they care has had a transfusion in the last 20 yr especially, will they too end up with their life coming to a screeching halt as they know it today? Then they need to be lobbying their elected representatives, asking what's being done to help people with this disease, & how can they find out if they might have it, & is there any way to stop yourself from falling ill? People need to be concerned that their next viral infection might be one from which they won't recover, & they need to feel indignant at the thought that someone could heartlessly blame it on psychiatric illness. It needs to be a subject of TV shows, not just documentaries, but things like an episode of one of those cop/forensics shows, where XMRV is found in a victim's blood, where people claim someone with ME/CFS committed suicide due to psychiatric illness, but they find the person was murdered, & the illness is real. We need to have characters on TV whose children show up with the symptoms, or who suddenly can't work at all or only a little due to ME/CFS. People will ignore news, but they will watch something for entertainment. I don't know how we can get that exposure, but I think it's essential. Maybe someone out there is good at script writing? How about a romance novel where the heroine has ME/CFS? Or an adventure novel where the famous scientist that dropped out of view after a stunning scientific discovery is found to have ME/CFS & can't complete his/her life's work, but their work has been hijacked & somehow, the hero has to help the scientist find a way to stop the bad guys.
    Maybe I'll give a novel a try, if I ever get enough energy...don't wait on me, it could be an unpublished Great American Novel attempt for a long time! :)

  7. Thank you Andrea. Excellent piece.

  8. Andrea,

    Brilliant! About to share the link on Facebook!


  9. Excellent points everyone! I just saw your link from Jeanne on FB and wanted to make a quick comment: Follow the Lyme disease and co-infections journey. It is very, very similar. Lyme and co-infections are highly transmitable/infectious and can cause severe impairment, including major central nervous system problems. Some say that Lyme can kill. When a disease is called "infectious," it can really get people's attention, as you said.

    Maybe this award-winning clip from the Lyme documentary Under Our Skin can serve as an inspirational piece for CFS/XMRV activism:


    Good luck and just let me know if you need any help. I worked for many years in interstitial cystitis PR and marketing.

  10. You can see this on a small scale when you try to tell people why CBT and GET are bad for ME patients. Eyes glaze over as you talk about how they make people sicker, only benefit certain vested interests etc. But try saying "Can you believe the government is wasting YOUR money on this crap that has been shown to be completely useless???" - and see the interest suddenly spark.