XMRV International Advocacy Strategy: Help us start a Facebook page?

[Frickly]

Here it is...

We might want to start by adding a welcome note.

http://apps.facebook.com/causes/421525

 

[fresh_eyes]

Yay! Joined.

 

[Lily]

The Mission Statement

You are doing a fantastic job Frickly and I wish I could be of more help. I actually use to write stuff like this when I had a brain.

I'm thinking I'd like to see the Mission Statement as a little more dynamic - I don't have a lot of suggestions at the moment, but I do think that Parvo's statement is more action oriented and I don't think it's difficult to read or confusing. (those aren't exactly the words you used, but sorry my memory is so short). That's just my 2 cents.

You'll see me throwing in little bits and pieces here and there, but then I'll be unable to elaborate on a thought.....so feel free to ignore and I won't take offense

 

[OurDayWillCome]

Frickly

Thank you, Frickly.

BTW... I don't like to write, but read lots. I can also proofread if needed... despite my typos...just give a shout.

Great start on FB!

 

[bullybeef]

Could we all update each other on how many people we are recruiting?

I am also a member of cure 4 ME: http://apps.facebook.com/causes/399439/25514217

And my responses here are very spares.

If we all succeed with our XMRV Global Action invitations, it would be interesting to measure.

Incidentally, the Andrea at the top of the Cure 4 ME tree, is none other than Ms Whittemore herself.

 

[fresh_eyes]

Maybe we should hold off on inviting everyone until it's more complete. After that, I bet we get a lot of interest from WPI and CAA fans.

 

[Frickly]

Thanks

Thanks for the feedback. When I said long I meant it would not fit because there is a limit on characters. However, there is always room for improvement and we can reword it later if we can all come to an agreement.

By the way, I used to be very good at writing but now cannot put two words together to save my life.

You are doing a fantastic job Frickly and I wish I could be of more help. I actually use to write stuff like this when I had a brain.

I'm thinking I'd like to see the Mission Statement as a little more dynamic - I don't have a lot of suggestions at the moment, but I do think that Parvo's statement is more action oriented and I don't think it's difficult to read or confusing. (those aren't exactly the words you used, but sorry my memory is so short). That's just my 2 cents.

You'll see me throwing in little bits and pieces here and there, but then I'll be unable to elaborate on a thought.....so feel free to ignore and I won't take offense

 

[Frickly]

Parvo

I think since you got the ball rolling you should be the first to start a discussion on facebook. Also, Lets think about our welcoming statement and get it on there.

Anyway, I have 13 people coming to my house on Thurday and have done nothing to prepare. NOTHING! I have not even finished Christmas shopping. I suggest everyone take a look around the page and get some ideas about where we want to go from here. I have to go shopping. Ugggggg!

 

[Frickly]

Thanks

Please tell me if anything goes on that is spelled incorrectly. Spelling is another ability I seemed to have lost.

Thank you, Frickly.

BTW... I don't like to write, but read lots. I can also proofread if needed... despite my typos...just give a shout.

Great start on FB!

 

[Frickly]

Hi Marco

Sorry for the late reply but did read your post and appreciate all the feedback. Sounds like you have lots of experience in this area and hope you will continue to provide feedback.

Thank you,

HI All

I know this had been discussed on another thread but I hadn't realised it had started until 50 odd posts in. Magnificent work everyone.

Unfortunately I have little to offer except, as I stated in another thread, I've been through this before having been a founder member of frenchhealthissues (FHI)
http://www.frenchhealthissues.eu/default.htm

The site is now archived as we were almost 100% successful in persuading the French government to reverse plans to retrospectively change the law relating to residency and access to health care. I include the link only as an example of website content.

Some things that we found important :

The founder members were all volunteers but it was necessary/sensible to assign roles and responsibilities depending on capabilities and at times to seek further volunteers from outside the core group e.g. for translations, another pair of hands etc.

A website is fine but has a tendency to appear static unless there is provision for interaction and regular updating. As has been said, one strength we have is that we all have a story to tell. The FHI site had a facility to contact by webmail where people could tell their stories, raise problems, track progress etc. The site also had a latest news section which kept the main site from appearing static. People are hungry for news but many do not or cannot just continually surf the net or will necessarily be able to pick out the important news items.

Thought needs to be given to the website content. A well designed site that is light on content won't retain vistors. Likewise, while its understandable to want to have something up and running there's nothing more offputting than sections waiting for content or links that don't link.

You IT buffs may know the tricks. I know that the frenchhealthisues site always appeared first in keyword searches.

Political pressure works. Many people wanted to write to their elected representative, the French government, the health ministry, the European Union etc but didn't know all the issues or how to write the letters (or even who to write to). The website held names and addresses of elected reps plus template letters for all purposes also translated into French where appropriate. Basically we made it as easy as possible for each individual to bombard the decision makers with personal correspondence.

Many governments make use of polls, petitions etc as part of their 'public outreach' - encourage everyone to use them.

Try to identify 'tame' politicians and cultivate them. Each individual should identify their public representative and contact them to provide their support
as all public reps should.

Finally, get friendly with the media. Public embarassment is the politocos no1enemy, particularly where they are vulnerable, and the media love public interest stories. I'm also sure science programmes such as the UK BBCs Horizon would love the XMRV story. So much going on - third? human exogenous retrovirus, cancer, ME/CFS, Gulf War Syndrome, public health risk, government cover ups etc?

Thats all I can think of off the top of my head. Apologies if its all obvious.

Mark

 

[txfriend]

You're all Marvelous! Unbelievable!

This is one of the best ideas I've seen in 21 years with M.E.

Thank you, all...parvo, frickly, 'eyes', ALL...you PWC/FM/MEs are
the most courageous and wonderful people.

Did I mention generous, brilliant, talented, compromising, loving
and peaceful?

I'm going to join the cause!

Bless you all, bless this endeavor, and HAPPY HOLIDAYS to all

 

[Frickly]

Thanks Txfriend,

I wanted to let everyone know that we have an option of creating an "action" on the facebook page. We can also send bulletins to the cause members.

The following is a description of an "action":

When I can think again I will add a welcome to the page. Please let me know if there is something you would like here.

Add an Action
Your supporters want to get out there and make a difference! Create an action below to provide meaningful actions your members can take to support your cause. This gives your cause members the opportunity to do more, become more involved, and be more engaged with your nonprofit and the work that you do. And it gives you the ability to identify super-supporters and mobilize your supporters like never before!

Whether it's picking up trash at a park, calling their local elected official, or talking to their neighbors about health care, create an action below and encourage your cause members to get involved!

Title
The title will be used after the word "to", as in "Jane Smith is taking action to ____".

Examples: “Clean Up Heritage Park” or “Urge Your Representative to Support HR 2756”

Estimated Time to Complete this Action minutes
This is the number of minutes that the action will typically take to complete, or a suggested duration for open-ended actions.

Things Accomplished
This is meant to describe the nouns that will be achieved or accomplished by taking this action. This should be a phrase than can follow a number. It will be appended after the number of items accomplished by someone taking this action.

Examples: “pieces of trash collected”, “letters written to Congress”, “hours of safe driving”, “neighbors informed about health care”, …

Description
Describe the impact of this action and why it is important that people should take it.

URL
(Optional)
The URL where a member can either find information necessary to complete the action or complete the action itself.

Example: http://www.example.com/action-instructions

Photo
(Optional)
Adding a photo will make your action much more compelling and it is highly recommended.

or Cancel

You don't yet have any actions. Create one now?

 

[fresh_eyes]

@ Marco - Wow, it's great to have someone with your experience on here. So...do you want a role on our team??

@ txfriend - Aw, shucks... Happy holidays to you too!!

@ Frickly - I will be happy to provide photos/graphics for whatever actions we come up with. Unless somebody is having an inspiration right now, let's revisit the actions after the holidays. We can also review what we've done so far and refine it then. Did you get your prep done for Thurs? You're a brave person to have 13 people over! Hope you have a wonderful, wonderful time.

 

[OurDayWillCome]

Frickly

I will let you know if I spot any misspellings. Just know that my time will be limited for a few days. We will have about 18 for Christmas dinner. Still have a couple of gifts to pick up.

Happy Holidays to all.

 

[parvofighter]

Thank you @ Frickly & team!

@Frickly, thanks for your remarkable and FAST efforts! The Facebook page looks great, and I really like the outcome:

Mission: Our mission is to accelerate global access to diagnostics, clinical trials, treatment, and prevention for diseases associated with the retrovirus XMRV by creating a global advocacy network.

Position 1:: The XMRV retrovirus is transmissible by blood, and is likely in the blood supply. This potential contamination is a worldwide public-safety crisis.

Position 2: XMRV is associated with debilitating and life-threatening, poorly-understood illnesses, including cancers and neuro-immune diseases.

Position 3: Some patients have been ignored for decades. There is a critical global need for accelerated access to XMRV testing, clinical trials, and treatment.

Position 4:We have strength in numbers. Vigorous global advocacy and sharing of best practices across diverse XMRV patient groups will drive accelerated change.

Position 5:We share a common need. A powerful and unifying PR strategy must demand swift and decisive action from governments and research bodies.

I like the longest combined version of the Mission - maybe we can put that up on the website. If anyone has an idea how to make these even more punchy - your suggestions welcome! Given the opportunity, my posts can tend to the nerdy/dry, so any infusion of inspiration welcome!

I have bought unlimited space on GoDaddy @ www.xmrvglobalaction.org
It should be up within 24 hours - but I totally get that this is difficult timing re: the holiday obligations. We'll get to it when we can...

@Marco, your experience with http://www.frenchhealthissues.eu/default.htm is remarkable - thanks SO much for your insights, and keep'em coming! Would you be able to contribute and/or critique the layout of the website, so we get it as right as possible before adding content? Or can you suggest a layout/format that would enable the website to be as dynamic as possible?

This is what I'd like to suggest:
a) We put just the VERY basic info on the website when able. Maybe a bit of the first post, the great info that went up on facebook. And a hot link to the xmrvglobalaction thread on mecfsforums, so folks have a way to connect together in this planning stage. (I'll check with Cort to see if he minds.) That way we can start the groundswell to connect with organizations that can help us build this wave. And likely we'll be able to recruite web-savvy folks to help with the uploads and global content.

b) We contact a few key players - maybe the diagnosesupport folks in the EU, the US Vets @ Veterans Today (I've already emailed them), etc. to work behind the scenes to set up an architecture for the website so that multiple posters can add to it.Would love any input on this - who can help us get this up & running? I've also shared the password for the XMRVGlobalAction.org site with @frickly, so there isn't any barrier to inputting. Other web-savvy folks who could help out?

c) We give access for edits to the website to one or two designated contacts per country or region - once we've decided on an architecture for how to organize the info: i.e. folders, subfolders, etc.. Some kind of limited access so we don't have a free-for-all, but also so we don't have the whole responsibility on our shoulders, and so that it is genuinely global, and updated as much as possible. You can probably tell that I'm a luddite when it comes to websites - I have no clue if this is feasible. Comments?

LOVE the idea of the the Facebook Action items - I'd love to have friends/contacts help in a very tangible way that is directly linked to our needs. Specifically, could they help to identify potential organizations that could join the cause. Give us hotlinks, contact names, emails, forum addresses, from across the diverse patient groups, and around the world, etc. Identify credible media contacts. Lists of politicians in each country to contact.... They could write to this thread @ this forum for now....?

@bullybeef, I really like your thoughts on measuring response:

Could we all update each other on how many people we are recruiting? ...If we all succeed with our XMRV Global Action invitations, it would be interesting to measure.

Ideas for tangible help
For now, might I suggest that we try to contact as many organizations as possible, and direct them both to this forum thread, and to the Facebook page, & ask them to write their reaction (and hopefully support) for the XMRVGlobalAction concept? Do they like the idea? How can they help us? Recommendations? Edits? Could they write a "testimonial" on the need for global advocacy? Can we use their logo on our website? Other?

Thanks again for jumping in, and all the best for a very merry Christmas and holiday season. I know many of us have been cutting it close with crashes and PEM, but I DO think the New Year is going to be a LOT better for us.

I'm going to try to help any way I can. I'm not good at admin - better at web research/distilling info/strategy thinking. And am totally new to Facebook too - much less setting up a website, altho I do have a family member who can help. I do believe though that there are lots of folks "out there" who could help us by leaps & bounds. We just need to put the word out... Have a wonderful holiday season.

 

[txfriend]

Parvo, Frickly, et al

Is there some way you all could put the name of the FB page and/or
"global" name at the beginning of each of your posts/replies?

It's real hard to find it the one or two times over 10 pages...

Thanks so much!

 

[fresh_eyes]

Re the suggestion above - maybe you guys could put a link in your signature line?

Happy holidays, everyone. You're amazing people.

 

[leelaplay]

xmrvglobalaction http://apps.facebook.com/causes/421525

woo hoo xmrvglobalaction looks fantastic

Amazing work Frickly, Parvo, FE et al. I just love it. I just lay down for a moment and look what you all have done while I was sleeping.

You've accomplished so much in a short period of time. How inspiring.

We'll have to work on making it easier for people to find here and on facebook. I know nothing at all about facebook. I went there, signed up, and then searched all over and couldn't find the site. I did find about 10 xmrv related groups in the group section. Finally had to come back here and skim the posts til I found the link to the site.

Is there a quick and easy explanation as to why one becomes a cause or a group? Is it possible to be both? Is there a way for it to show up on the facebook search?

I expect NOT to get an answer til all holiday rituals are over.

Happy holidays to all. And to a better upcoming year for all of us. if

 

[fresh_eyes]

Yes, its important that XMRV Global Action also have a Facebook "Page". That's actually the main resource, and the Cause page is an adjunct.

@ Frickly - Do you want to start it? it's really easy, and probably just needs the same info that we've already put together. If you're on a Page, like the WPI, there is a button at lower left that says "create a page for my business".

 

[Frickly]

Thanks guys

I am fairly new to facebook and learning as I go. I will see if I can get that up today. I have been on my computer so much it overheated.It still works but my husband is building another lap top for me that should be ready today.

Must do's:

1. Figure out how to share admin responsibilities with Parvo on facebook.

2. Put up a welcoming statement.

3. Work on facebook page with cause attachment.