the power of Google

[leelaplay]

The great disruption

Ken Auletta argues that it isnt the scope of the impact, it is the speed of the change that should have us concerned about the power of Google

This is a short enjoyable excerpt from his talk re the power of Google. I think I'm starting to see that most of our advocacy groups are like old-time advertisers - "they're committing suicide, but calling it murder" or aren't even aware that they are committing suicide.

The internet is only 9 years old really (give me leeway on the numbers - my brain you know), and facebook under 5 I think. The impact of the change is like that of the gutenberg press, electricity, the computer - but the speed of change is what has left so many older organizations behind.

I love and am amazed at how much advocacy we are doing. And we need to do it as it isn't being done. But I wonder about tapping into the information, connections and wisdom gathered over the years by the established groups. Can we liaise better with them, mutually use one another better? Help them out of the dark ages, or at least send an open invite, and leave some bread crumbs if they don't join right away?

I don't know. An image comes to mind that maybe we're some of the first who have gotten up on our boards and are surfing the new waves rolling in, while most of the established groups have either just jumped into the water with their boards and have started paddling out or are still back on shore wondering if they're up to the waves.

 

[fresh_eyes]

I love and am amazed at how much advocacy we are doing. And we need to do it as it isn't being done. But I wonder about tapping into the information, connections and wisdom gathered over the years by the established groups. Can we liaise better with them, mutually use one another better? Help them out of the dark ages, or at least send an open invite, and leave some bread crumbs if they don't join right away?

Hi IF. Hope you had a nice holiday. Thanks for posting this interesting piece. I have experience working in the nonprofit world, and I have some insight into the culture of established nonprofits, which are essentially conservative, cautious organizations that don't want to step on toes. My hope has been that the discussion of CAA might turn to what the CAA is good at, what its limitations are, and how the grassroots community and the CAA might work together and support each other. A CAA will never be an ACT UP, which is fine - but we need an ACT UP too, and quickly.

To that end, I've made a couple suggestions to CAA board members on the forums. For example, when we were discussing the need for a strongly worded statement on replication studies, I asked if we might draw up our own and release it with the CAA's 'seal of approval', and/or possibly use their email list to distribute it. When I heard that the CAA did not have the resources to put out such communications, because they don't have a Communications Director, I asked if they would consider creating a volunteer position, and I volunteered for the job. These thoughts were met with a disclaimer that the board members are not on here representing the CAA. I also suggested that they create a volunteer Community Liaison position, which never got any response.

It would be wonderful if we could work *with* established advocacy groups like the CAA, which have resources we will never have. Do you have any thoughts on how we might make that happen?

 

[Tom]

Bloggers of the World Unite.

Bloggers of the World Unite.

I've been tryingto keep away from this section ,it's hazardous to my health.
This is your post islandfin , but no blame goes your way only thanks.

One thing I've noticed is how well the bloggers write. Rod sang “Every Picture tells a Story” but words draw the picture , and some bloggers are true artists.
However,
WE , are the only viewers and readers, it's not crossing over to main street and not hitting main stream media.
Use the undoubted skills with words that you all have and change tack slightly.
You are a computer, write about how you as a computer are affected by what we have.
Write as a windows pc , a Linux pc and a Mac. Get the attention of Geeks.
Write as though you were a car etc . Get the attention of petrol heads.
Write as tho' you were a TV , GET the couch potatoes and most of all the Kids.
You are a Whale---Greenpeace.
Spoof stories..... these can GET to everyone.
So, how does this way help us.
I've noticed that there are some very skilful and Knowledgeable people here.
Combine using keyword optimisation for the blogs and Search Engine Optimisation tools to GET the blogs picked up into the web equivalent of the bookstore magazine specialist press then crossing over into the main stream media. Web, then to hard copy.
Keep things emotional , that's what sells. It could be you , or if not you your children. Your wealth.
The repair bills could be horrendous.
Linguists are here , translate , spread the word. Plaigerize each others work , copy and paste , GET the word all over.
Side Effect.... may pick up extra paid work.... but you don't need to take the money if you don't want to . BIG Smiley Face.

Install Java from java.com , if you need help with your computer and you have an internet connection, now I can help fix it. MY bit.
I've started reading up on S.E.O and submitting sites to search engines. Got the software.
We don't have to leave our homes if we are not able.
No time time-table , no deadlines no STRESS.
WE would bypass existing advocacy groups , pressure groups,legislature committees charities etc. until they picked up on it . Our target is to GET to the man on the street and GET them emotionally involved with us. I think that's the target , could be an inner ring.
Turn cognitive behaviour therapy onto everyone else.
Now this could be useful for creative writers.
http://www.thesun.co.uk/sol/homepag...thal-serves-up-dormouse-as-festive-treat.html

Tom

 

[starryeyes]

fresh eyes that is very enlightening. It sounds like the CAA is stuck in the mud. It's great that you volunteered. I wish they had taken you up on it. We really need the CAA but they're just not here for us. Not in the way we need them to be. Now that I read what you wrote I feel like they could care less about us. That would explain all their contradictory literature.

 

[fresh_eyes]

fresh eyes that is very enlightening. It sounds like the CAA is stuck in the mud. It's great that you volunteered. I wish they had taken you up on it. We really need the CAA but they're just not here for us. Not in the way we need them to be. Now that I read what you wrote I feel like they could care less about us. That would explain all their contradictory literature.

It's hard to know what to think, teej. I don't know how to proceed. I have not been involved with the CFS community for very long and had no preconceptions about the CAA; I assumed that some of the more heated criticisms were probably unfounded. Now I'm beginning to see where it's coming from. If they would just own up to their shortcomings, make some changes, I think we could get back on board. But is appears - incredibly - that that is not going to happen. At the same time, I hate to tear them down and watch all their resources go to waste - not to mention the waste of our limited energy in that process, energy which could be going to productive action on our own behalf. What to do?

(BTW, do you know how they are funded? Also what their structure is? Generally the Executive Director answers to the Board, but that seems not to be the case?)

 

[fresh_eyes]

Thanks so much, charity. Lots of info there; I'll have to look at it when I'm fresh.

 

[starryeyes]

fresh eyes wrote:
When I heard that the CAA did not have the resources to put out such communications, because they don't have a Communications Director, I asked if they would consider creating a volunteer position, and I volunteered for the job. These thoughts were met with a disclaimer that the board members are not on here representing the CAA. I also suggested that they create a volunteer Community Liaison position, which never got any response.

fresh eyes, when did you ask the CAA about this? CF says in the "How's the CAA Doing?" thread that they just haven't had time to respond to you because it's Christmas.

 

[Marco]

Tom makes an critical point. We are largely discussing among and preaching to the converted. We are either not crossing over to the mainstream or always on the defensive. People outside the 'ME comminity' need to share our anger and outrage and feel that ME involves them either through the potential for illness or financially.

We need to get out to mainstream discussions e.g. (in a UK context)

Discussions on the economy - why is Govt wasting taxpayers money on crank therapies? why not fund proper research into a disease costing X billion per year?

Hospital hygeine? what about covering up the contaminated blood supply?

The general election - will the incoming govt reverse the policy of neglect?

Local issues? - where's the nearest ME 'clinic'?

Women's issues, men's issues - basically any forum can be used to introduce the topic.

And - don't be afraid to get involved on 'enemy' territory e.g. psychology, phsychiatry, general medical fora.

See the link for a supposedly well meaning but naive rheumatologist getting a trashing on a Psychology website :


http://www.psychologytoday.com/blog/overcoming-pain/200911/awakening-the-reality-chronic-fatigue-syndrome

 

[jspotila]

To that end, I've made a couple suggestions to CAA board members on the forums. . . . These thoughts were met with a disclaimer that the board members are not on here representing the CAA. I also suggested that they create a volunteer Community Liaison position, which never got any response.

fresh_eyes, I really appreciate the suggestions you have posted here, and your willingness to step up and help! Understand that my "disclaimer" was not a brush off. I cannot say "Terrific! Thanks for volunteering, here's a bunch of stuff to do." I can't. But I have passed on your suggestions, and suggestions from others, for consideration. I can't guarantee what action will be taken or when.

In another post, you asked:

(BTW, do you know how they are funded? Also what their structure is? Generally the Executive Director answers to the Board, but that seems not to be the case?)

The Association receives most of its support from individual donors. The Association's CEO does answer to the Board, and the Association is structured along the lines of best practices on non-profit governance. I'm happy to answer other questions that you have.

 

[Samuel]

Hi jspot ,

The Association receives most of its support from individual donors. The Association's CEO does answer to the Board, and the Association is structured along the lines of best practices on non-profit governance. I'm happy to answer other questions that you have.

I have a few.

Specifically who are the biggest (each) of government, corporate, and individual donors? If you can't say, which ones can't you say about?

Of the corporate and individual donors, can you cross-section them by industry (assuming you have that information for enough individuals) and add them up to say what the biggest industry donor is? (Same for government function if it's more than one donor.)

I'd be interested in the above answers both for the present and as an aggregate from founding to the present.

Thanks.

Samuel