It's
It's likely you have taken the survey before. It was posted here a few weeks ago.
Your points about more communication is right in line with a conversation I was having just two days ago with another long-term advocate. I used the example of a married couple where one has been unfaithful. After that betrayal, the offender may have to go way overboard in communicating things like where he / she is hourly because the trust has been broken. It may take time to build that trust again. And, this extra effort to communicate may be required to build it.
Clearly, there is a strong feeling of betrayal toward some organizations and the government in the ME/CFS community. PANDORA was started in 2003, after all that had happened.
I just started with PANDORA last summer. What I have noticed since then is that PANDORA works hard to involve patients and patient organizations. Honestly, some of you may remember the Chase Community Giving project. Clearly, PANDORA depends on and tries to empower the online patient community. The petition and survey is another example of involving patients and empowering them. That is one of the reasons I accepted the offer to work for PANDORA.
I have seen an e-mail from Marly with 63 people asking them for input or for help or even just to inform on something to those individuals are empowered to do something or have input in sharing ideas of how a problem might best be addressed. Again, highly unusual as most organizations deal with matters within their board, make a decision and
then inform or ask for collaboration. However, this has not always worked out for PANDORA. As the conversation of how to address a situation, a project or something else, has sometimes been misrepresented by those included in that discussion. In other words, the effort to be more inclusive has hurt us. There was the assumption that those involved would understand that this input or being informed was a courtesy and should be respected and appreciated. As you can imagine, if something is now brought up that Marly might want to involve other individuals or organizations in planning or getting input, she is much more selective now.
We hear often that patients say, "Why can't the organizations work together?" "Aren't they talking to each other?" etc. Yet, when an effort is made to include or discuss with leaders on all sides of the spectrum, an extremist will say, "Why are you talking and including that person. Don't you know that person talks to that organization (or that person) who is an enemy?" It has been not only guilt by association but guilt by association of someone who has association.
Collaboration and planning must have people included who are discreet and trustworthy. For example, it took three weeks to get the letter to the CDC. A patient was concerned about the appointment and based on the past joint effort actions PANDORA has done, asked Marly to do something and asked what should be done. A discussion ensued. Marly said PANDORA would write a letter that basically gives Unger a chance, in a professional and courteous tone, while is clear and strong on what is needed. After letter was written, we invited other organizations to sign it, including some in the original discussion. A few declined. We also invited a few long-term advocates. A few did, a few declined. We found that some said it was too strong, one said it wasn't strong enough. But, we felt it might have been just right because the majority invited did accept.
Now, this, of course, was three weeks of work done discreetly. You can imagine what that was like. Each of the organizations had to discuss it among their board members and have a vote. It would have been counterproductive and very unprofessional to have all of this work happening on message boards or facebook for three weeks.
Not everything can be online internationally in the discussion phase.
An example is a man who has a new project he is working on at work, possibly something he can't tell even his wife. He may have to attend an after-work meeting and not be able to give his wife any details of who or where he will be. Or maybe he is planning a birthday party for his wife, again requiring some discussions that his wife is not aware of.
So, how to work in a constructive and professional manner, so that projects can actually be planned and put into effect, not derailed before they even get off the ground, while at the same time involving and informing the patients who have felt betrayed by others is a very hard line, is a balancing act indeed. It requires judgment. We may err, but we are trying.
In the real world, legally, the organization serves its mission but is answerable to its board only. How much communication is done with constituents (I hate that word) is up to that organization. But we recognize that the past makes the ME/CFS online world is unique.
Anyone concerned they are not more informed will get more information if they are willing to volunteer to help.
But even I don't know everything that is being discussed or proposed by PANDORA. I am communications director. If there is a communications need, then I am involved. But I don't have to be involved in every phone call or every meeting, thank goodness.
Tina
