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Volunteers to review CAA literature and website??

Discussion in 'Action Alerts and Advocacy' started by shrewsbury, Apr 4, 2010.

  1. caledonia


    Cincinnati, OH, USA
    I agree, cfids.org is way overdue for a major redesign. Navigation is confusing. Too many menus. Design? Blah.

    The Facebook page is actually better - more interactive. I think it would be good to move to a Content Management System for cfids.org to encourage/increase interactivity and involvement.
  2. Hope123

    Hope123 Senior Member

    I've noticed that JSpotila hasn't commented on this though it's entirely possible that she is busy and/or too ill at the moment. I hope someone has contacted her to look at this thread and get the CAA's opinion. CAA has people on the board who have CFS but I don't know how much contact or whether it is the duties of anyone on or off the board to encourage/ monitor patient/ donor input. For the record, I don't have much but I am in their Chairman's Circle or whatever it was called due to monthly donations.

    Aside from facts/stats about harm from GET that need to be disseminated, other points that need to be cover in info presented are:

    - the poor recovery stats for CFS/ME (<10% across time and even among some research from "psychologizers")

    - the idea that early diagnosis = better chance of recovery. This has been presented in CDC and some other materials and needs to be carefully vetted in CAA materials.

    Getting a diagnosis early is important and good and it is important that symptoms like depression/ sleep/ pain etc. could be alleviated with proper management but I have yet to see a study that shows early diagnosis mean better chance of recovery. I think this idea is based on one study showing people who have CFS less than 2 years recovered but this doesn't really speak to the fact that early diagnosis and (by implication early treatment) helped their recovery. (If anyone has a study about this, I'd like to get a copy of it.) I was diagnosed as early as possible, went to some top docs, and I don't think it made a difference as I see worsening rather than improvement of some of my symptoms despite their best efforts.

    The danger of this view is that it implies there is something docs can do to significantly affect the progress of this illness when there isn't any well-proven treatment we really know off. This detracts from the true picture of ME/CFS at hand.
  3. dancer

    dancer Senior Member

    Midwest, USA
    Hope123, thanks for raising that issue.
    It baffled me when I read that people who are diagnosed sooner had better outcomes, because there are no generally effective treatments. I kept thinking, "why? what good does it do to get the label after being sick for six months vs. one year?"
    All I could figure out was that if a knowledgeable doctor explained what was wrong right away, the patient would avoid aggravating the illness by trying to "push through" symptoms.
  4. jspotila

    jspotila Senior Member

    Thank you for being a part of the Chairman's Circle! I have been reading this thread with interest. To my knowledge, no one has approached or reached out to the Association about this idea. IslandFinn and I did exchange PMs with mutual questions (that we agreed to keep between us as they were very informal and preliminary). She has created an invitation-only group to work on the project.

    Not to threadjack, but I was diagnosed at six months but here I am 15 years later. I will always wonder if different advice at the beginning could have made a difference.
  5. oerganix

    oerganix Senior Member

    Jennie, I'm one of the invitation only work group, interested in working with the CAA to help preview and critique material before it goes up on the website, or help research and/or write material there.

    Before putting a lot more energy into it, I'd like to know what the CAA's attitude to our work is. Please consider this post to be reaching out to CAA, and asking for advice on how to proceed constructively. If we're not wanted, I'd like to know now so I can put my energy towards a more receptive organization.

    If you all are already working on some of what we have complained about, or have something ready, or almost ready to go, please let us know.
  6. jspotila

    jspotila Senior Member

    As I suggested to IslandFinn, I think the group should approach the CAA through the main office, in writing, and using real names. That's the place to start. Staff are already aware of this thread and the project idea, but that's not the same as receiving an actual offer of volunteer help from individuals. No one, here or at the Association, wants or needs to spend time on something without knowing it's going to happen. There are always changes to our materials in process. I don't have specific knowledge of the status on all the documents people have complained about here on PR.

    Personally, I think this project idea has potential but only if everyone and I mean everyone involved approaches it with professionalism, patience, and willingness to work together.
  7. shrewsbury

    shrewsbury member


    Thanks for the vote of confidence that us ME/CFSers are already at a point to have decided how we think we can best approach this. Needless to say, we are on ME/CFS time and just getting organized and batting around ideas of how we can be part of effecting the needed changes.

    But oh dear – I feel quite uncomfortable, and put in an awkward position – hope I’m being too sensitive. A short history:

    Hope123 initially came up with the idea of working with the CAA
    I thought this was a great idea as I’m a “work with and/or within” type of person and started this thread posting my opinion to see if anyone else was interested in this approach. I personally feel that this could be the most effective route to change that is positive for us, the CAA, and anyone touched by or involved in the disease

    Numerous people indicated interest and a group was started. Having the group be invite only grew out of the group’s discussions and was not my decision.

    At about the same time I PMed Jennie to see if she had any insights to share with us to make this more effective. We exchanged a few emails.

    I found it helpful, but in order to continue the conversation she asked that I keep our conversations confidential,

    and also asked that what we had discussed to this point be kept confidential as well

    - in fact to keep confidential that we had even spoken
    (her words, "I would appreciate it if you would not tell the group that we are having this conversation at this time.").

    I said that I would not be comfortable continuing discussions and keeping them confidential as I believe in transparency with the group,

    but to show my appreciation for her initial communication that I would honour her request and keep that fact that we had initial PMs and their content about this confidential.

    I honoured that agreement.

    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.

    Anyways – as the group gets organized, maybe Jennie and/or the other CAA people on the forum will be able to work with it at that point as a bridge to working with the CAA, or maybe other paths will be more appropriate.

    My personal fantasy is a cadre of volunteer patients who preview all materials before the CAA publishes them and help with the revision, replacement, or adding caveats to existing materials.
  8. jspotila

    jspotila Senior Member

    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.

    My personal belief is that the CFS community will get farther working together, but that will require everyone to be patient and willing to do that kind of hard work. How those participating in the PR group project want to handle or approach this particular project is absolutely up to them, at their pace, and in what way they deem best.
  9. Dolphin

    Dolphin Senior Member

    Early diagnosis

    Here is one study:
    What would be more accurate to say with this is that those who were diagnosed early were at less of a risk to be severe at follow-up rather invoking the term "recovery".

    I think there is a value in talking about the value of early diagnosis as doctors can be more inclined to be on the look out for it.

    In my own case, I don't think I would be severely affected now (for 16.5 years), if I had been diagnosed earlier. I was mildly affected for over 4 years but after 4 years without a name for my symptoms, my support system crumbled. Also, there were expectations of what I should have been able for which can be lowered with a diagnosis.
  10. shrewsbury

    shrewsbury member

    Hi Jennie,

    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.
  11. jspotila

    jspotila Senior Member

    I stated here and in a PM to you that it was an error with no ill intention. If you want to disclose anything from our conversations, let's discuss by PM. Misunderstandings happen, and communication is the way to fix it.

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