Good job, Tina. I thought after the last (failed) campaign to Unger's bosses that we should have sent it to Unger, herself. At the October 2010 CFSAC meeting, her testimony indicated that she was blissfully unaware that everyone in the room disagreed with her. She even attempted to educate the committee.
Building an advocacy plan in response to Unger's appointment
- Thread starter medfeb
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Good job, Tina. I thought after the last (failed) campaign to Unger's bosses that we should have sent it to Unger, herself. At the October 2010 CFSAC meeting, her testimony indicated that she was blissfully unaware that everyone in the room disagreed with her. She even attempted to educate the committee.
Medfeb, everyone feels as you do. With the internet, everyone has their own opinions. And without healthy leadership from either the docs, who could have published a clean definition years ago, or a healthy and funded national patients group to organize us, I'm afraid the fragmentation is here to stay for a while. All I can suggest at this time is to deal with the individuals responsible (CDC, etc.), rather than the public, to demand a biologic stance. We don't have a unified authoritative view of the illness to give the public after all this time. As long as the CDC contradicts us, we are dead meat. There is our target.
http://www.cfidsreport.com/Articles/advocacyruts/integrationadvocacy.htm
I agree with Craig Maupin [which he says was written several years ago - history repeating again]; everyone should read this link and think very seriously about the consequences of further fragmentation.
Don't feel bad, Taniaaust1; that is why medfeb and a healthy and funded organization are needed. We have proved over 20+ years that patients just can't do it with their current methods of polite letters, etc. I don't think we can get the many internet groups to unite, and maybe that's not bad. Until the CDC, our docs, etc., come out with an authoritative stand for a biologic basis, we all have our own ways of fighting for it.
That's why we suggested a single "communication service" to handle advocacy petitions. It is well within our reach for a couple of sick techies and a couple of sick but knowledgeable editors to forward petitions from the various groups and individuals, enabling a constant flow of opinion without killing the patients in the process. Anyone submits a petition/statement to this unaffiliated source, the editors check it, the techies send it, along with any other statements that week, to a subscribed list of people interested in advocacy; the recipients click on which statements they support and return their votes to the techies, who count the votes and forward the statement to the targeted person. Easy, quick, timely, targeted, international, and consistent communications with the authorities who have the responsibility to communicate the validity of our disease to the public and to our physicians. Would anyone volunteer?
Hillary Johnson has a new edition (2006) of Osler's Web. I suggested to Unger that she read it, but she obviously hasn't. Everyone needs to understand this background. It shows us why we must stop writing long and exhausting letters and start attacking, realizing this is a war over political will, not an information campaign. This one step alone would free up a lot of patient time and energy.
Medfeb, you understand the history of the disease better than many foggy patients. You've seen the many efforts, the many - even overload of - well-written pieces on the internet, the abundance of good information about the biological basis of the disease, and the advocacy efforts to make it known. You have seen the variety of opinions, the disagreements, even nastiness of some. I hope one thing is clear: we need to change our advocacy direction and tactics! We must understand that this is a war, not an information campaign, and we must attack, not inform, the people driving public health policy who deny the science and just call us crazy and lazy. Anything you can do, that hasn't been done before, with a healthy brain and persistence, might be a turning point in this movement. That's how important you are. (If you scared easily, you wouldn't still be with us.)
You know we are with you.
Marty
P.S. Another idea for you, medfeb: a daily News Sheet which reports the highlights of the day. Rather than all of us searching all the sites, one person searches and send us the highlights (with links). It would save gobs of time and energy. It's on another thread, post #9: http://forums.aboutmecfs.org/showth...ailing-list-for-petitions&p=152353#post152353
google searches are good, too. doesn't find everything, but sends links to lots of things with your keywords. chronic fatigue syndrome, sarah myhill, XMRV, ampligen, whatever you want to know about. news articles, blogs, medical sites, but not all the PWME blogs that don't promote their sites to search engines.
Sorry, I didn't make myself clear; I was referring to these forums and blogs, not the public news and information. People here pick up immediately on things like the December virus papers, the Unger appointment on a Saturday night, a Wall St. Jrnl piece, a Mitkovits video, etc.
ah, that makes all the difference. yes, someone with the energy to index these would be super helpful then.
also, someone with relevant skills might promote PWC/ME blogs to search engines, for those who want their sites promoted
I could see the various sites/blogs self reporting to the News Sheet reporter when they have a news item, as could any individual, with attribution, of course, so that people would go to their site for the full story. And this is real breaking news, not anything else that isn't really time dependent and/or widely reported. The reporter at the News Sheet might have to make some decisions to keep the News Sheet short enough; that reporter would also eliminate duplicates. It has got to average only maybe 2-4 items so as to fulfill the purpose of being a short and vital headline vs. a full newspaper story; just front page headlines, if you will. There surely would be days when there is no breaking news.
I could also see the distribution list being the same as, or at least overlapping, the advocacy list for voting on petitions. Maybe the news and advocacy would be the same short email? Or an email saying there was something new on a website today?
I know I would love to be able to skim the news in a few minutes without spending hours online unless I chose to do so. Our new advocacy strategy is to get the most effect with the least effort or cost, and this seems to me to meet that goal by keeping everyone informed without sacrificing large amounts of time. How many others feel that way?
It would also introduce new readers to sites and blogs they might not have known about.
usedtobeperkytina
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MCWPA will be sending press release across newswire on the next big biological finding in ME/CFS.
Also, concerning CDC, see this:
http://www.facebook.com/#!/note.php?note_id=187999007886638&id=43354982370
And if you are not a Facebook member, go directly to the petition: http://health.change.org/petitions/view/tell_cdc_to_change_their_mecfs_research
Also, concerning CDC, see this:
http://www.facebook.com/#!/note.php?note_id=187999007886638&id=43354982370
And if you are not a Facebook member, go directly to the petition: http://health.change.org/petitions/view/tell_cdc_to_change_their_mecfs_research
I hope everyone understands that the "communication service" proposed earlier has no bearing on the type of petition used by MCWPA. The "service" is for single statements from any organization or individual that can be grouped with other statements and voted upon in a minute; it results in many communications to many targets in a month. There is a feeling of competition here, but there is none.
Co-Cure
For those that don't know about it, I think the Co-Cure mailing list is a good way to keep up-to-date. http://co-cure.org/ (don't confuse it with the message board).
It is for announcement E-mails, not for discussions. Has an average of maybe 30 messages a week but one can tell from the titles of some of them that they might not be that relevant/much of interest (to particular people).
Combine that with keeping an eye on: http://forums.aboutmecfs.org/ and http://aboutmecfs.org/Rsrch/XMRVBuzz.aspx and one probably has a reasonable idea of what's happening in the ME/CFS world including XMRV news. One can then look for more indepth opinions/chat on these issues.
For those that don't know about it, I think the Co-Cure mailing list is a good way to keep up-to-date. http://co-cure.org/ (don't confuse it with the message board).
It is for announcement E-mails, not for discussions. Has an average of maybe 30 messages a week but one can tell from the titles of some of them that they might not be that relevant/much of interest (to particular people).
Combine that with keeping an eye on: http://forums.aboutmecfs.org/ and http://aboutmecfs.org/Rsrch/XMRVBuzz.aspx and one probably has a reasonable idea of what's happening in the ME/CFS world including XMRV news. One can then look for more indepth opinions/chat on these issues.
Yes, Co-Cure is great. Again, though, the "communication service" being discussed here is not for information, which Co-Cure does very well. It is for breaking news of the day which we might want to react to and which we can scan in one minute or less. I spend hours and get bogged down checking several sites to see if there is any news today. (There is always something interesting to read.) This could be a clearing house for all sites to contribute to when they have an urgent communication for today. It would also increase readership when recipients click on the site's link to follow up in more depth and find sites they don't usually see. It's for when they don't have the time/health to check the forums and blogs.
taniaaust1
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A very easy petition to do for all (it also allows those from other countries to sign it unlike some petitions)... just need to put in your name, address, country, postcode and its done. (
from something written here.. i thought I had to get a new account to sign it so almost didnt go and look at it but when i went to the site, I found that wasnt the case at all).
The letter they sent with the points being made is at bottom .. so if you scroll down you will see it without having to read everything else.