Jennie - I know you have ME/CFS as well. Maybe you forgot that you were the one who asked that the group (and I assume the larger community) not be made aware that I had contacted you for your advice and not be made aware of anything that you said in our communications.
IslandFinn, you absolutely honored my request in PM that our conversation be kept confidential and I appreciate that. Perhaps I should have PM'd you again before responding to direct questions from Hope123 and oerganix. I hope my posts, which you quoted, have not given anyone the impression that I thought you were not honoring that request. I also hope no one heard any negative connotation to my comment about IF's group being invitation only.
I am rather flummoxed by this situation and not sure what to say.
I’m very glad to read you say that you were not implying anything negative about me personally or the group that expressed interest in seeing if it can work with the CAA to help with the problems seen by patients in some of the materials the CAA is broadcasting, and therefore endorsing.
My concern was really about confidentiality. I believe you are an attorney – you surely understand my concern. You retroactively asked for and I agreed to confidentiality – of the content of our conversations and also the fact that they had taken place at all. In essence, an oral contract.
I agreed because I’m very keen on keeping communication open with you and the CAA and believe that working together would be to the CAA’s benefit and to patients’ benefit and would produce the fastest results.
However, this meant that I could not refer to the content, or existence, of our conversations when working with the group.
When Hope123 posted asking if anyone from the group had contacted you, I saw this question being to me and to the group, not to you. But because of our confidentiality contract, I was unable to answer it.
Oerganix is in the group – and obviously, my confidentiality agreement with you precluded me from discussing your feedback – hence she had to post questions on this thread .
So when I read your post, breaking that agreement, and disclosing that we had spoken, and some of the content of our discussions, I was flummoxed. I still am. I’m sure if the CAA had a confidentiality agreement with an individual, and then the individual broke it when asked a question, you would have similar feelings.
I am still honouring our agreement and have not disclosed any of the content of our discussions other than your asking for confidentiality.
Because of this situation, I can see the possibility that members of the group might not trust me. I would respect that position and have offered to quit the group.
I think trust building between the CAA and many patients is necessary. And it will be necessary for this group and the CAA to find a way to work together. And if not this group, if these discussions lead to the CAA initiating finding a volunteer patient group on its own, trust building will be important between that group and the CAA, and that group and the broader patient community.
To me this is an issue of trust and ethics.
You know that I have posted my appreciation of your presence on the forum and for what I perceive to be positive actions on the CAA’s part on this forum many times.
In the spirit of cooperation and of giving a fellow ME/CFS patient the benefit of the doubt, I am assuming breaking confidentiality was an error on your part with no malintention.