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Suggestions for change at the CAA? Post here.

M

mvwu

Guest
On the "Time for the Big Talk" thread, Jennifer Spotila and I had the following exchange:

Putting together several observations:
--many members believe that the CAA doesnt listen to patient input,
--there are a number of ideas here that could use a direct response,
--the Chairman of the Board, Jennie Spotila, is reading and participating in this forum.

Perhaps Jennie Spotila would be willing, if we were to start another thread devoted only to concrete suggestions for change, to respond to those suggestions.

Jennie, would you? You could say, Hey, great idea, Ill take that one to the board. Or, Ill talk to Suzanne Vernon about that. Or, Good idea. Actually we are already doing that. See this link. And so on.

I am willing, and as Cort mentioned I am already reviewing the materials Khaly collected as well.

On a personal note, I am very ill. I have an average of two functional hours a day, and so I will not be a constant presence on the boards. It may take me awhile to respond to questions, but I promise you that I will respond. Also, my term as chairman ends on December 31st. I will remain on the Board (secretary in 2010), and I will continue to participate here and in other dialogues. But between the holidays, and working on the hand over the chairmanship to Adam Lesser, I am stretched very very thin.

I will be here, I will be reading, and I will pass on your suggestions and criticisms to the Board and/or staff. I will do my very best to respond to your questions.

I am encouraged by Jennifer's responsiveness to my suggestion. Please feel free to post your own. As she said, she is sick now, so we should keep our expectations for replies in line with the knowledge she is ill. We can also hope that Adam Lesser, the new chair for 2010, follows her example and is also willing to engage in a dialogue with us.
 

fresh_eyes

happy to be here
Messages
900
Location
mountains of north carolina
Nice work, mvwu. My main suggestion would be to create some infrastructure to make this kind of two-way communication between patients and the CAA easier and more effective in the future. We shouldn't have to improvise like this every time. (Perhaps creating a community liaison position?)
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
This is just what we need. Thank you jspotila for wanting to help us communicate with the CAA. I'm sorry to hear you are so low-functioning and sick. I can relate. Whatever you can do will be wonderful and I really am glad you're here. :)

Levi's thread is amazing! I liked the joke too. ;)

tee
 
Messages
19
Location
SF Bay Area
Change suggestions

After observing things for a long time, here are some ideas for improvement:

Communicate with more candor:

In the past the leadership of the CFIDS Association has tended to only focus on it's successes without openly discussing strategies that were not working. For example in the late nineties / early 2000's it was already obvious that NIH funding levels for CFIDS research were stagnant. Yet the association leadership still talked about what wonderful progress it was making getting the government to fund CFS research better.

Become less insular:

It seems to me that the board and the leadership have been too disinclined to fully participate in the too and fro of patient discussions. Ideas are out there if you are willing to listen. Based on personal experience the leadership has tended to be dismissive of patient inputs in the past.

Openly measure yourself continuously and quantitatively over long time frames:

How about stating long term goals that can be measured. I.E. we wish to increase NIH funding by this amount over time. Then place a spreadsheet on your website that is updated yearly that tracks NIH funding levels after adjusting for their categorization games. This is an area where the CFIDS Association needs a lot of work.

Publish financial records that are easy to understand:

Since 2007 the Association has stopped publishing accounting information in an easy to understand format. Considering how often the CFIDS Association notes the cognitive limitations of it's stakeholders, it does not take the time to inform it's stakeholders about what is going on quantitatively in an easy to understand format.

If you are a board member familiarize yourself with past history:

Why did Mark Iverson step down in 2001?
Why did several board members suddenly step down en mass several years ago?
What conclusions should you draw from these episodes?
There is a context to the dissatisfaction - but you will only figure it out with the above history in mind.
 
Messages
19
Location
SF Bay Area
Another Idea

How about providing a way for the public to directly interact with board members without any filtering by the CFIDS Association leadership?
 

Cort

Phoenix Rising Founder
I think WildDaisy and Slovokia had great ideas. Here are mine from another post:

  • Communicate, communicate, communicate - be a presence on the Forums
  • Be more provocative in your advocacy efforts. Cast aside some of the professional veneer and be more inflammatory
  • Talk about the negative stuff more; for instance, keep the community aware of NIH and CDC funding levels. Explain what you are trying to do to remedy that even if its not working. The CFS community sense's something is terribly wrong at the federal approach to CFS but they get a disconnect regarding that with the CAA. This is why so many people are upset at the CAA's 'tooting their horn". Communicate the difficulties at increasing federal funding levels; make patients more of a partner in this regard. Candor as slovakia pointed out is VERY important.
  • Respond to inaccurate postings as quickly as possible; basically defend yourself instead of staying above the fray. Don't let rumors take hold and turn into concrete. Explain why you are doing what you are doing very clearly. Be very transparent.
  • Create a series of position papers on just where you stand on hot button topics.
  • Keep the focus on the Research and in particular build the Research Network you're engaged in.
  • Get more interactive on the web; build your own social network - become a place where CFS patients want to go to interact about CFS.
  • Create physician and treatment review sections
  • After digging into the CDC for the last year and a half start digging into the NIH
  • Keep looking for more opportunities like building the Physician Education program
  • If its within your means to build or help build a national network of groups do so.

All of this would be great and honestly I'll bet they would love to do most of it. The question, of course, is resources.
 

leelaplay

member
Messages
1,576
And I would expand on Koan's idea of having a registry of the 35,000 doctors the CAA has trained.

Also, could add any doctors who treat ME/CFS.

The more info on each doctor, the better - specialty, protocols favoured, costs, a "review" section, contact info....

Info in some type of database so people could have the option of searching for doctors in their area.

islandfinn:)
 

jspotila

Senior Member
Messages
1,099
These are all helpful comments and suggestions. I am keeping a running list, and will look at the other two threads linked here as well. I know I won't be able to keep up with everything on the Phoenix forums, so it will be helpful if anyone wants to link something in to be sure we see it.
 
K

Khalyal

Guest
Thank you Jennie

Thanks for listening, thanks for taking the time to gather our concerns, thanks for responding!
 

jspotila

Senior Member
Messages
1,099
Clarification?

One simple thing the CFIDS Assn could do right away is put a section on their website where people could write in with questions and comments.

Is your suggestion that there be a way to write in, or that there be a FAQ? Or were you thinking of a forum similar to this, where submitted questions would be public? Thanks!
 

Marylib

Senior Member
Messages
1,155
Thanks to Jennie and Kahlyal

You both deserve thanks. Jennie for listening and Khayal for stirring up the pot without personal accusations or pettiness. You are both so well appreciated.
 
Messages
19
Location
SF Bay Area
Another Suggestion

How about making policy choices in a more democratic way?

Right now it appears that the CEO makes most of the policy choices while the board sets overall goals. Is this the only way things can be done? Why can't the board influence policy choices more, with input from the patient community?

This issue is all the more important considering the CEO has been in their role 18 years while the board has had constant infusions of new people with new ideas. When we have to rely mostly on one person responding to change don't we slow things down? There is a reason that democracies limit time in office of elected officials.
 

jspotila

Senior Member
Messages
1,099
How about making policy choices in a more democratic way?

Right now it appears that the CEO makes most of the policy choices while the board sets overall goals. Is this the only way things can be done? Why can't the board influence policy choices more, with input from the patient community?

The Association follows non-profit governance best practices in the way the Board and CEO make decisions. I had no idea when I joined the Board that there even was such a thing as governance best practices, but it's a huge and well developed field. Here's how the Association's website describes the Board/CEO roles in setting policy and strategy.

"The CFIDS Association of America is governed by an elected Board of Directors comprised of dedicated men and women who volunteer their time, knowledge and breadth of experience to help forward the campaign to conquer CFS. Since the Association was founded in 1987, 83 people have enriched the organization through their service on the board.

Association policy is set by the Board, which includes persons with CFS (PWCs), family members of PWCs, and professionals, all of whom understand the needs of PWCs and are in regular and frequent contact with the patient community. Members of the Board and professional staff also rely on the counsel of members of various advisory committees, standing committees and task forces when making policy decisions.

The President/CEO leads the Associations staff in implementing Board policy and carrying out strategic and operating plans adopted by the Board. The President/CEO is responsible to and reports to the Board."

From the Association's website: http://cfids.org/about/leadership.asp
 
Messages
19
Location
SF Bay Area
Policy choice detail

While the board may indeed set policy choices at a broad level, what I am concerned with is more detailed policy choices / implementation choices. Can these be made more democratically?
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
2 things the CAA could change right now:

1 - Change their brochures. Delete the notion that CBT and GET help patients with CFS. Don't even mention it. The brochures should state the seriousness of CFS, they don't have to mention XMRV yet. And the brochures should be advertised, they are free right? Get the word out that we can order as many as we need. Make them very easy to read with a nice little picture on top. One pagers would be awesome. I just want something to be able to hand to strangers on the street and to the cops that try to arrest me for parking in a Handicap Zone and I know I'm not alone on this.

2- Start a massive campaign to educate doctors, nurses, dentists and EMTs. One of the most important things to emphasize is that we cannot usually handle any Epinephrine in our anesthetic and we need special anesthetics for surgery.