Sock It To ME: a community public art project to raise awareness and funds.

[creekfeet]

Wow, wow and more wow. I was only asleep for a few hours but this thread was hopping.

Puppy That's very exciting, and an indicator that this thing may get bigger than we had imagined, faster than we had dreamed. Thank goodness we've got well people like you on board with the energy to see things through.

jaceI'm sorry, I didn't even know you had been in the hospital. Definitely time for some resting, and maybe some more delegating? Maybe after you get the instructions writ we should hand on construction to some healthy volunteer? Thanks for posting and I hope you're feeling okayish!

DreambirdieWow, yes, I guess that is possible. We had planned already to have information and links included on the website, but to become more of a patients advocacy group, perhaps pushing policy, demanding improvement of the CDC definition and criteria, working for adoption of reasonable physician guidelines... on the one hand it's way more than I had bargained for, and on the other hand it's what I've dreamed of. You truly are a Dreambirdie.

So... wow. Ever more reason to engage and enlist and ensourcel the assistance of lots of healthy helpers. And take care of ourselves so we can be able to contribute at least a fraction of the amount of involvement and energy we wish we could.

 

[Dreambirdie]

Dreambirdie Wow, yes, I guess that is possible. We had planned already to have information and links included on the website, but to become more of a patients advocacy group, perhaps pushing policy, demanding improvement of the CDC definition and criteria, working for adoption of reasonable physician guidelines... on the one hand it's way more than I had bargained for, and on the other hand it's what I've dreamed of. You truly are a Dreambirdie.

Thanks Creekfeet (my feet love the name btw) for the heads up. I am real excited now!

I think WE can be the advocacy we always wanted. Why the HELL not!

 

[creekfeet]

Publicizing the Project

We had planned to wait until the web site was up before making the project fully public, but now it looks like it's out of our hands. So my thought is...

1) ...get something up online as quick as possible, even if it has to say "under construction," so we can own it and guide it and have something happen when people google it.

2) ...contact Hillary Osler and Dr. Bell and WPI and ... who else?... and give them a special courtesy pre-announcement.

3) ... go ahead and post it on all of our FB pages and email stuff out to all our contacts and send out press releases etc.


What this means to me personally is we'd better get on with crafting the email and web content, so I have some writing to do, and consulting with you all, and working with talkingfox's hubby to get the website going.

I've been crashing pretty bad this past week, really limited brainpower, so I must proceed with caution. For example I won't be able to finish reading Parvofighter's article probably this whole week or next, and that's frustrating because I understand there's some action item, emails wanted? No way I can read through the whole thread.

Some of my brain meanwhile has to go to sorting out another social service failure: my monthly income has been cut way back because they refuse to understand that temporary income will not be ongoing.

My brain is starting to go whoosh just thinking about all of this, and it is sooo frustrating because I want so badly to be able to do it all. Anyhow, I'll do what I can.

I feel this is a critical moment, a turning point in the project, so I want to be able to function and help things along.

 

[Dreambirdie]

OHHH... another thought... a SLOGAN FOR OUR CAUSE:

For everyone that thinks that CBT and GET will cure CFS, we say "PUT A SOCK IN IT!"


PS Creekfeet, just to let you know that I dropped an email to both Donnica Moore and Nancy Klimas already.

 

[starryeyes]

Following my hospital visit yesterday, I'm in recovery mode right now...




I'll get on with the "how to" page when the symptoms recede - right now, I'm taking some time off. I'll be back on the case in a few days.

I didn't know you were in the hospital Jace. May I ask why you were? Hugs and prayers to you and I hope you heal quickly.


Dreambirdie - I like your thinking! Yes Yes and Yes to everything you've said.

 

[DrDonnica]

I just dropped her a note, with a link to this thread.

Maybe she can help us get some media attention? That would be nice!

I'm always happy to help. . .let me know when there's something newsworthy. Sorry I don't have time to go back & review this whole thread. My CFS focus right now is a book for kids/teens with CFS (& the people who love them) that I'm working on with my son. Signed publishing contract yesterday. Also have an article on CFS due for "The Female Patient" (a medical journal that goes to physicians & has a patient-focused waiting room version). Another small victory: I pitched an article to the pharmaceutical industry trade journal Pharmaceutical Executive, with the agenda to "invite" pharmaceutical industry researchers to start aggressively joining the race for discovering the cause/s & treatment options for CFS. The article isn't perfect, but they interviewed several names you know, including myself, Annette Whittemore, Cort Johnson, Suzanne Vernon, Kim McCleery & others. Note that there is a different version of the article for the US audience (longer: see http://pharmexec.findpharma.com/pharmexec/article/articleDetail.jsp?id=661633&pageID=1&sk=&date=) & the European audience (shorter: http://digital.findpharma.com/nxtbo...gest_20100324/index.php?startid=16#/7/OnePage). For those who want to comment on the article, there is an email section on the site.

I'm also home with a CFS-crashed son, so don't worry--I will not forge thte importance of this cause!
Best regards,
Donnica

 

[creekfeet]

Wow, book and articles sound great. I'll be checking out/watching for them.

The sock project is great for kids and teens. How about a note in the book referring them to the web page so they can participate? Or maybe on sock-shaped bookmark, like they give out in the library to publicize kids' books?

 

[Dreambirdie]

I'm always happy to help. . .let me know when there's something newsworthy.

I'm also home with a CFS-crashed son, so don't worry--I will not forget the importance of this cause!
Best regards,
Donnica

THANKS SO MUCH, DR DONNICA!

I am so sorry to hear that your son has crashed again. It is heartbreaking when kids have to deal with CFS.

You are so kind to help us like this, when we call upon you... even with your busy schedule and a crisis at home.
We will keep you posted about our progress, and let you know what's up.

thanks again

 

[Dreambirdie]

In addition to her recent post, I just got the following email from Dr Donnica. So I'm going to start a new thread with her info. I trust that's okay. If it isn't let me know.

"Thanks for letting me know. I posted a message to the forum on that thread, but if you know how to copy & move it to either start a new thread or add it to the media reports on CFS section, that would also be good.

Best regards,
Donnica"

 

[creekfeet]

A Plea: Slow Down Just a Little?

Please everyone hold off just a little while more before making any major announcements of the project. I feel like we've got guests arriving for a big party while we're still on our pajamas ... which while it's maybe a very appropriate image for this disease, isn't a great way to launch the project.

When people arrive full of curiosity and energy we want to be able to direct them immediately to action. Jace and I need to write stuff, tfox desperately needs more knitters to make some minisocks, we all need to be clear what we're asking people to do, and at least a skeleton outline needs to be in place on the website, and then we can go.

Help? We need addresses for people to send socks to, in the US and UK at least, to start with. Anybody able, or know someone who is able, to receive socks and assemble garlands?

If people start arriving and asking to participate, and we tell them they've got to wait, they may never return. So please, let's slow down and not invite more people til we've got the doormat out.

 

[creekfeet]

To clarify: I'm delighted with the way energy and enthusiasm are building but I'm also sick as hell, we all are. So we can't do it all at once. I've posted several times with little lists of sequential steps we need to take. So please hold off an taking this idea outside of this thread for now until we've done these steps:

1) ...get something up online as quick as possible, even if it has to say "under construction," so we can own it and guide it and have something happen when people google it. (This is where we need an action step ready for people arriving. That means we need to be ready to give out not only the project email but the snail mail addresses for sending socks. Otherwise the momentum will bog, possibly fatally. So we MUST find volunteers to receive socks and assemble garlands before the website goes live.)

2) ...contact Hillary Osler and Dr. Bell and WPI and ... who else?... and give them a special courtesy pre-announcement.

3) ... go ahead and post it on all of our FB pages and email stuff out to all our contacts and send out press releases etc.

 

[talkingfox]

Wise words creek.

I too am pleased as punch that there is so much interest in the project! But we really need a foundation built before we can build a stable house. I think the parameters that creek has laid out are good ones and hopefully in the next month and a half we'll have the bodies we need in place.

 

[Dreambirdie]

Dr Klimas is excited to hear about our project. Here's what she wrote me:

"cool! That sounds great! We have one patient event coming up May 8 , and I am attending the INVEST in ME meeting in London at the end of May - I can put the word out if you send me a power point slide. You should do a you tube video too, they get a lot of play."

 

[Dreambirdie]

2) ...contact Hillary Osler and Dr. Bell and WPI and ... who else?... and give them a special courtesy pre-announcement..

I can do that. No problem. I have a contact at WPI--Frankie Vigil, the media coordinator. I sent one off to her already.

If you give me contacts for others, it will be very easy to drop them a note as well. Or I can find them on my own.

 

[creekfeet]

I can do that. No problem. I have a contact at WPI--Frankie Vigil, the media coordinator. I sent one off to her already.

If you give me contacts for others, it will be very easy to drop them a note as well. Or I can find them on my own.

Wait! Okay? That's #2 on the list. What I'm begging for here is a few days so we can have more pieces in place BEFORE we contact those people. Your enthusiasm and willingness to contact people is fabulous but please can we take step one before we proceed to step two?

 

[Dreambirdie]

Hey Creekfeet--

I thought you wanted ALL THREE of those things done ASAP. whoops.

But no worry, I don't think anyone is expecting anything from us... except for maybe future updates. This was just an initial heads up note I sent them. But I promise, I won't do another thing. In fact, I'm going to beach.

 

[Puppy_almighty]

I can recieve socks here if you need

Please everyone hold off just a little while more before making any major announcements of the project. I feel like we've got guests arriving for a big party while we're still on our pajamas ... which while it's maybe a very appropriate image for this disease, isn't a great way to launch the project.

When people arrive full of curiosity and energy we want to be able to direct them immediately to action. Jace and I need to write stuff, tfox desperately needs more knitters to make some minisocks, we all need to be clear what we're asking people to do, and at least a skeleton outline needs to be in place on the website, and then we can go.

Help? We need addresses for people to send socks to, in the US and UK at least, to start with. Anybody able, or know someone who is able, to receive socks and assemble garlands?

If people start arriving and asking to participate, and we tell them they've got to wait, they may never return. So please, let's slow down and not invite more people til we've got the doormat out.

 

[creekfeet]

Puppy: What's mail like between AK and the lower 48? Sock receiving should be done by somebody who has the time and (basic) sewing skills to assemble the socks into a garland, and is willing to catalog them simply, and can ship garlands to wherever they're going to be displayed. Up for all that? Or able to rope in locals who are? Then you've got the first US receiving concession, in my humble.

Dreambirdie The beach, ooooh, envy, envy! I hope it was grand. And restful. And no worries, we'll all catch up with ourselves. And would you like to design the powerpoint slide?

jace and other UK people how's chances of our having a few socks to hang at that Invest in ME conference in London, where Dr. Klimas is willing to present the powerpoint slide.

 

[talkingfox]

as far as attaching the socks to the garland what's wrong with just a few stitches with an upholstery/sail needle and some upholstery thread directly to the line? Simple and stable. If a loop is likewise fashioned at the end of each line and the raw edges taped each garland could be simply attached to the next with a carbiner and every bit as simply unattached.

 

[Puppy_almighty]

mail runs 3-5 days from here to lower and vice versa. i do have basic sewing skills and have friends to help. once we know the catalouging steps i have help with that too.