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We have gotten to be a chummy and even relentlessly helpful website. All to the good, but sometimes we forget some of the basic agreements we have here, so I thought I'd post a commentary to remind us. When you joined you checked off your compliance with Site Terms and Usage and I would urge you to review those terms from the link I've given.The most important reminder, especially from me as site owner, is to help calm my already anxious and somewhat neurotic nature, prone to panic (I'm a therapist, remember?):
Comments on another thread have made it clear that some people have found using www.cpnhelp.org difficult. I take these expressions seriously, and God knows we who are sick, brain fogged, computer challenged and porphyric don't need another aggravation! There have been a number of things I've not been happy with about Drupal (the CMS web system we use). The rich text editor has inconsistencies between browsers (this is true for all of them in other systems as well), configuration is complicated and multilayered.
A Window on CpnFor thirty years now, I have been asking what ails my scalp and suddenly I seem to be getting some answers. I am not going to write a scientific paper, it’s not my forte. What I am good at though is observation and this is what I am going to record here. I will venture to make some hypothesis or extrapolations from observing what is happening to my scalp to see if it can serve as a model for what may be happening inside my body. In other words is what is happening on my head a reflection of what is happening inside?
Well, it's been interesting...
As is per usual in computer-land, the attempt to solve one problem created a host of others. The heroic work of our helper Bleu has us restored to function, but it won't be pretty for a while. It will take me some time to put back together the way we had things working with the upgraded system.
So, please be patient, and hold off alerting me about problems with the site for a week at least so as to give time for things to get reorganized.
Thanks for your patience!
As owner/editor of www.cpnhelp.org I'm supposed to have some pithy, inspiring, or important thoughts for the New Year with the "big view" of this task of dealing with Chlamydia pneumoniae. I find myself, uncharacteristically, at a loss for words as I reflect on the past year here at Cpnhelp, and try to look ahead. I will write anyway, and hope that the process of writing itself will call forth what lies in the murk of shaded reflection.Of course, we have grown here, and grown in many ways. The site itself has grown, with so much more information available, and greater understanding evolving from those of us in treatment, intelligently observing our treatment and that of each other over these two years. Of course this growth of knowledge brings to a sprawling website, sprawling being the term David so accurately coined for us a while back, the "problems of plenty:" we have more and more information with less and less organization! I look at the Cpn Treatment Handbook, for example, and shake my head, as all I can see is how it desperately it needs to be rewritten and reorganized.
To date, it has made sense to me that www.cpnhelp.org members should have the ability to edit their own blog posts, even delete them if they get carried away and regret posting something at a later time. This has never been a problem, and in fact has been useful as members have sometimes added to their blog posts over time so as to keep things on the same page, and so on.But a recent occurence where a member, in deleting all their own blog posts, also permanently deleted reams of useful material on the topic of porphyria by a number of members, made me rethink that policy.
- As per the user agreement, all material posted here the property of www.cpnhelp.org, so the ability to edit your material is a privilege, not a right.
- We are all here ill, and subject to mood swings and states of mind (I have been noted publically to do foolish things on-site "under the influence of Tini" myself) that can lead us to misinterpret, miss-post, over-react to others comments, mis-type and other impulsive or poorly judged actions. The power to delete with immediacy should not be in such hands!
You may notice some "new" chapters and reordering of the Handbook materials from time to time. I've taken it on to tidy it up for my New Year's resolution. The Cpn Treatment Handbook has grown over the year or so of its existence, and has become a bit of a sprawl. Looking at it as newcomers might see it, there's must be a way to pare down the up front information so as to better orient the reader, and still keep the treasure trove intact. As for additions, hopefully Basil (hint, hint) will give us and updated and more complete chapter on porphyria that even a lay person can understand. We really need a section in diseases on CFS/FMS, but those of us with these are too tired to write them! Perhaps Red can do a write up on Rosacea if he feels the itch.So I'll be creating some new chapters and reorganizing old ones. If I make a major faux pas please let me know. And, as always, all comments about changes are welcome, just keep adding them here.