Volunteers to review CAA literature and website??

[leelaplay]

Hope123 came up with this idea on the CAA thread:

Originally Posted by Hope123
You know, if people really want the CAA literature/ website to change, rather than just posting our opinions here, consider VOLUNTEERING to help the CAA review its website and materials. Perhaps small virtual work groups could be formed, test versions of documents sent out to relevant parties (researchers, patients, advocates, etc.), etc. This, of course, also depends on the CAA's interest/ openness in doing this too. Our limited energy can be put to effective use.

I think it's an absolutely brilliant idea. Anyone interested in doing this?

I thought maybe we could see how many people would be interested first. Then we could approach the CAA formally (although of course Jennie and others will be informed of our intentions and perhaps participate in this phase from the moment I post this - so they'll have lots of heads-up time to think about how they will respond to our offer of our services).

It seems a great way to put our passion and expertise to work.

 

[Otis]

Love this idea. :victory:

Count me in!!!

Otis

 

[starryeyes]

I'm in. Thanks for spear-heading this IF. I want to work on the CMEs.

 

[oerganix]

Count me in.

 

[justinreilly]

Yes, I would LOVE to do this. Of course they have ignored almost all patient input on their content for years, but one can hope.

 

[julius]

I would love to do this is I was a lot smarter. I just want to say that this is a GREAT idea. Rather than shooting bags of sh*t at each other, we can work together to make things better. How novel!

 

[leelaplay]

Hi all - a quick check in. I 'm thinking we should wait for a few more days to see who is interested, then next week we can take stock and see how we want to move forward.

julius - i'll bet you a year's supply of cat food that you're way smarter than me.

 

[julius]

julius - i'll bet you a year's supply of cat food that you're way smarter than me.

I guess if I won I that would make me smarter and fatter.

I guess I should say too foggy. I have the smarts deep down, but they don't always come out to play.

I'd love to try to help out, as long as no one is relying on me being consistent. So count me in on that condition.

 

[Tammie]

I guess I should say too foggy. I have the smarts deep down, but they don't always come out to play.

I'd love to try to help out, as long as no one is relying on me being consistent. So count me in on that condition.

I feel the same way.....would definitely be interested in helping within my limitations

 

[Dr. Yes]

Yes, I would LOVE to do this. Of course they have ignored almost all patient input on their content for years, but one can hope.

I would be more than willing to help to whatever (extremely limited) capacity I can. I really don't think it should be that difficult, as the Canadian Consensus document in its existing form could serve as an adequate replacement for the CAA's current stuff... they wouldn't really need much input from us if they would simply use the CC instead. The trouble would come from what I suspect would be a clash between a pseudo-behavioral 'model' long endorsed by the CAA and a strictly biomedical ('somatic' one) that we would be endorsing. I don't want to spend any energy on this if they mess up what we give them, or use it only selectively while retaining some of the junk we are trying to ENTIRELY remove.

 

[Gerwyn]

I would be more than willing to help to whatever (extremely limited) capacity I can. I really don't think it should be that difficult, as the Canadian Consensus document in its existing form could serve as an adequate replacement for the CAA's current stuff... they wouldn't really need much input from us if they would simply use the CC instead. The trouble would come from what I suspect would be a clash between a pseudo-behavioral 'model' long endorsed by the CAA and a strictly biomedical ('somatic' one) that we would be endorsing. I don't want to spend any energy on this if they would simply edit and modify what we give them, or use it only selectively while retaining some of the junk we are trying to ENTIRELY remove.

count me in i am willing to help in any way I can

 

[Lisette]

This is why I asked for an interview with a CAA volunteer. I would want to know exactly how my help would be used, and the likelihood that it would used at all. Thankfully, JSpotila said that an interview with her (or someone like her) was forthcoming.

I think knowing what the obstacles, problems, hopes, disappointments, requirements and whatever else would be illuminating would really help to light a fire under our own abilities. Right now, the place feels like a stone wall with a maze behind it and I'm sort of calling out in my thin, reedy voice.

I know it's not an ivory tower, but we don't want to build one of those. I think this crowd is more of a ropes and ladders scaling the walls sort.

I wish the CAA would look to its wider patient base for resources.

Does anyone remember the scene in the Lord of the Rings when all of the watchtowers were lit and we followed them from mountaintop to mountaintop?

That had to be one of the most thrilling moments for me because it was such a perfect visual for what is required for us all to ride to one another's aid. Sometimes I think of the people who worked before the internet, and now some of those who run blogs, as the lonely and hard put-upon people who make the climb to man those towers. Without them, no aid comes riding.

 

[justinreilly]

I would be more than willing to help to whatever (extremely limited) capacity I can. I really don't think it should be that difficult, as the Canadian Consensus document in its existing form could serve as an adequate replacement for the CAA's current stuff... they wouldn't really need much input from us if they would simply use the CC instead. The trouble would come from what I suspect would be a clash between a pseudo-behavioral 'model' long endorsed by the CAA and a strictly biomedical ('somatic' one) that we would be endorsing. I don't want to spend any energy on this if they mess up what we give them, or use it only selectively while retaining some of the junk we are trying to ENTIRELY remove.

I agree.

________________

 

[leelaplay]

Count me in. Hopefully we can break the jobs down into small tasks so we don't all keel over.

so true catch!

This is great. We've got 10 people interested so far. How about we set up a private group? We can meet there and thrash out how we want to approach it. It allows us to have threads for different strands of discussion.

My prime concern is that we figure out something that is effective and doesn't waste our precious energy.

Do we have anyone who is a great organizer and wants to be the facilitator? I'll do it in the breach, but I can't guarantee consistency these days. + it would be great to have someone skilled at it.

I'll go figure out how to open a group now.

 

[Dreambirdie]

Hey IF--

Thanks for starting this thread. I'm not up for this myself right now, but I do have one request.

I know everyone will be focused on CONTENT of the CAA site, and I'm sure there will be great ideas for changes to be made--based on the prep that has already taken place on other threads.

But I'm hoping someone will also address the APPEARANCE of this site. It is so dreadfully dull and uninviting. There is nothing about it that really grabs my attention or interest. (Maybe that explains why I never bothered reading anything on it until I joined this forum and was forced to take a peek.) It could definitely use a more colorful (and more easy to read) opening page, with some powerful statements about CFS, more legible fonts, and more interesting graphics.

A website is your cyberspace face, and this one could use a BIG make over.

ETA: I found this site that may be of some use for these purposes. Or maybe someone else has good ideas too.
http://www.coolhomepages.com/sort/?catName=UltraHip&sortType=DATE&pageNo=1

 

[Dr. Yes]

Good point, DB. I have always found the CAA website really complicated to navigate - let alone look at. There are redundancies all over the place. A few other people have told me the same thing.

 

[CBS]

Standards and standardization?

Hi IF,

Review of CAA content (review of content of all advocacy orgs. is a great idea), especially content on behavioral and psychological/emotional recommendations.

Is there a set of standards for appropriate and inappropriate content and how are you planning on standardizing the review across reviewers? I may have missed something in the "How's the CAA Doing?" thread.

Thanks for starting this.

Shane

 

[leelaplay]

Hi IF,

Review of CAA content (review of content of all advocacy orgs. is a great idea), especially content on behavioral and psychological/emotional recommendations.

Is there a set of standards for appropriate and inappropriate content and how are you planning on standardizing the review across reviewers? I may have missed something in the "How's the CAA Doing?" thread.

Thanks for starting this.

Shane

Great questions Shane. We're just at the very beginning - group set up today. Why don't you join us and help us answer them?

 

[Otis]

Islandfinn your PM inbox is full

Hey Islandfinn,

Please clean it you so I can PM you.

Otis

 

[oerganix]

Reviewing CAA lit and site

Just posting again so I can subscribe to the thread.....duh....