UK: Strategy to get through information blockade on viral link to ME/CFS

There has been a lot of concern about how little news is trickling out of the U.K. concerning the new viral link to ME/CFS. The reason for this lack of news  is better known to those who live there.  It is obvious from the lack of coverage that journalists either can't or won't publish the news, leaving the public in the UK ignorant of this important news. This is advice which you can take or leave. It's only my intention to help.

ACT

Contact Andrea Pring  at XMRV Press Releases to take part in this effort http://www.facebook.com/#!/group.php?gid=112160662164471&ref=ts

1.Join groups where healthy people from the UK public gather on Facebook. Groups about politics and sports.

2. Choose the best of the U.S. news coverage of the viral link.  Lift the best quotes from the articles to make your point.

3. Work as a team to post these different articles and quotes hourly.

4. You want to reach the people who tweet a lot, who facebook a lot. The electronic equivalent of the coffee house. Except people are now sitting in the coffee houses tweeting and facebooking. :)

5. Get Joe and Jane Public to start talking about the articles, and the news. Get them asking questions, and you have bypassed whatever procedures are in place to keep this out of the news.

6. If you cannot reach the people in power, take it to the people.

7. The people are on facebook and twitter who will in turn talk to their neighbors and people in pubs et cetera.

8. Go where the healthy people are.

9. If you would send an article out to your ME/CFS friends, send that article out on a political, news, sporty fan/group page on Facebook.

Groups to Join and Begin this Process

http://www.facebook.com/democracyuk?ref=search#!/democracyuk?v=wall&ref=search Democracy UK (200,000 members)
http://www.facebook.com/topic.php?topic=15103&uid=148007467671%EF%BB%BF ITV News
http://www.facebook.com/pages/Swimming/21117208001 Swimming (600,000 members)
http://www.facebook.com/thenational?ref=search&v=wall#!/pages/Hiking/131532787045 Hiking

That's how you start a conversation.

Good luck!

Andrea Martell

News Digest: FDA/NIH find MLV's in blood of Chronic Fatigue Syndrome Patients.

I am not well enough to write the prose and poetry that such a day deserves. We are still at the beginning of things. We do not have causation but we now have a confirmed association between CFS and murine leukemia viruses.  Here is the news of the day.  It will be continually updated to reflect publications on this discovery for August 23rd.

New mouse virus found in chronic fatigue patients

 
Mouse virus link to chronic fatigue is studied

Scientists Find Traces Of Virus In Chronic Fatigue Patients



 Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors

http://www.pnas.org/content/early/2010/08/16/1006901107 

Copy of the Full Paper 


Statement of Editor-in-Chief of PNAS on publication of controversial paper

http://www.pnas.org/content/early/2010/08/16/1012027107.full.pdf+html

 Second Paper Supports Viral Link to Chronic Fatigue Syndrome

http://news.sciencemag.org/sciencenow/2010/08/second-paper-supports-viral-link.html

Statment from the WPI on the Finding 

http://www.wpinstitute.org/news/docs/WPI_pressrel_082310.pdf

Study: Presence of murine leukemia virus related gene sequences found in CFS patients

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm223277.htm

 Chronic Fatigue Linked to Virus Class


Study Finds Retroviruses in Chronic Fatigue Sufferers 

http://online.wsj.com/article/SB10001424052748703846604575447744076968322.html?mod=googlenews_wsj

 Q&;A: Why I delayed XMRV paper


New evidence that virus may cause chronic fatigue

http://voices.washingtonpost.com/checkup/2010/08/new_evidence_virus_may_cause_c.html

THE FDA/NIH/HARVARD “XMRV” STUDY: THE SAME THING,
ONLY DIFFERENT

 http://www.cfscentral.com/2010/08/fdanihharvard-xmrv-study-same-thing.html

 Study: Presence of Murine Leukemia Virus Related Gene Sequences Found in CFS Patients



There is much work to be done before there is a FDA approved test, and clinical trials. Yet, with this vindication of the Science of the WPI,  the great work can begin to discover if these MLV's are indeed the cause of our disease, and with that real treatments to lessen our suffering and return some of what we've lost. 

Our way in to the hearts and minds of the public is through the safety of the blood supply!


Andrea Martell
Founder

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.