Well-Come to Agent for Change, a blog created by Marly Silverman, to serve as a catalyst for change that is much needed on the issues affecting millions of individuals stricken with neuroendocrineimmune disorders worldwide. Through this blog I want to share ideas, exchange, communicate and find solutions for everyday living. The goal is to pursue quality of life that will make a difference in the lives of individuals with neuroendocrineimmune disorders (NEIDs).

Sunday, June 17, 2012

"Us and Them" is Phasing Out

(Last guest blog from Tina Tidmore about the June CFSAC meeting.)

I've watched local, state and national politics, as well as the first "Survivor" show to see how people gain power to win against those who disagree. The ones who have extreme views tend to be the loudest and get the most attention. They pull at those closer to the middle to bring them to the extreme view. As they pull, the bring the people in the middle away from those with opposing views. The end result is two opposing groups who are angry and throwing stones at each other. It becomes a power struggle of who can get the most support and they try to squash the opponent by shear force.

In these situations, I notice that the majority is often in the middle on the issue. But they don't have strong feelings, so they are silent. What's missing is the dialogue. If the ones who are close to the middle on both sides start talking with each other, then they may find they almost agree. But the power struggle prevents this dialogue, where a solution and movement takes place.

In the history of the CFSAC meetings, the patients were on the other side of the table, creating an "us" feeling. (Exception is the one patient advocate on the committee.) The committee members, were "them." So we had an "us" and "them" set up.

The June 2012 meeting was different. The CFSAC administrators arranged for a dialogue from teenager patients and committee members. Talking to each other is better than throwing stones. Although, a few stones may be needed to get their attention. But openness is needed to listening with the heart. And if the person is in defensive mode, they aren't being open.

They got another patient advocate on the committee, a doctor who is an anesthesiologist.

They are working on the by-laws for organization reps to be on the committee, to be included in the discussions of the committee. (This may prevent the urge to yell out during the meeting.) This is great.

While it's great to have more patients participating in the committee discussion instead of just preaching, pleading or hurling at them, care should be taken to not become dependent on government agencies to do their work. The organizations must keep independence so they never become beholden to the government, even in a partnership agreement. They must always be advocates whether they are in the peanut gallery or sitting with CFSAC members as part of the committee. They must never fear losing power or position and fail to speak. This would be a betrayal. But it doesn't have to be on the outside. Advocacy does not mean adversarial. Advocacy can be done while sitting and talking with those who disagree.

If you see ME/CFS patients or organizations reps talking to some who you disagree with, don't think it is because they agree with them. Think they are trying to persuade them in a less formal way.

The CFSAC administration is also trying to get ME/CFS out of the fringe. The researchers and clinicians, evidently, are not mainstream enough to have credibility among others. The suggestion is to get representatives of physician organizations involved in the process for forming new criteria. We faced another conundrum: to get the new definition accepted, need to bring these associations of ignorant, possibly biased clinicians, to the table to be part of the discussion and the decision. But, they may mess it up if they have any say in the process.

The idea discussed at the June 14 meeting is to educate them first. Then have them be included in the process. Scary, isn't it. But, as long as ME/CFS researchers and clinicians are considered "out there" by their peers, then we won't change these associations and the physicians who are members. We must include these associations if we are to get ME/CFS mainstreamed. We must remove the "us" and "them" attitude and actions. We need to get them to carry our message for us, for our clinicians and researchers do not have the credibility as the leaders of these associations. I really appreciate the FDA ex-officio bringing this out in the June 14 meeting.

A wise ME/CFS patient explained a common way change happens.
1) Folks get mad and take to the streets with their demands.
2) They go too far and demonstrations turn violent
3) After the mess is cleaned up by authorities, the suits (more moderate and professional-acting folks in the movement) meet with the opposition to work out the changes.

This is what I have seen at the June CFSAC meeting. It's good we are now past stage 1, 2 and now are at stage 3.

Another thing I learned for sure from this CFSAC meeting is that I definitely have a southern accent. All doubts have been removed. I was reminded of it often. So, whether by radio interviews or at CFSAC meetings, I will use my southern drawl to persuade. And if I have to, I will publicly and boldly correct the ignorant and the biased - bless their little hearts.

1 comment:

Janet Wildeboer said...

I still don't understand how people sitting around a table that really don't seem to know what is wrong with us. They seem to be busy looking at their mail etc and really don't look up at the people pouring their hearts out.
One man at the round table said we have no blood test. Wrong we do. I took it and my friends did and we have it. Dr Hokama has been doing reseach, and The National CFIDS Foundation has the next project testing for the presence of vibrio bacteria. Check the web site.
What we need is to find out what other work is going on, then set up a conference calls, or web for them so we can play conect the dots. Think of the time loss because Dr. Martin and Elaine DeFreitias loss funding.Or is it CDC way to not get to the truth?