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Originally Posted by jonsi Jo sent me a pm with great info/slate to start with for getting info out in our local newspapers.
We (I?) still need help with what would be discussed during a support group meeting.
Itwl.
~jonsi |
Hi Jonsi. With your prior experience I think you will do
great. As I was reading this question, I was thinking that if I were at a group meeting, what would I want.
First, I'm thinking that there may be some who would wish for personal anonymity. A first name type of thing. An option to offer them maybe.
I don't think there would be a lack of things to talk about. At all.
In fact, one of the things that could be discussed is what does everyone want from the group; ideas, etc.
I believe that everyone would be so happy to talk to others who truly understand what they are going through.
The latest information on what's going on with Morg, plus like you said what works, what doesn't. I don't think that anybody would be disappointed that "the cure" isn't announced in a meeting. Just put the emphasis on the fact that this will be a "support group" for patients. And that in addition, information will be given on any new findings, etc.
I also believe that there is a true need to share. Perhaps a small amount of time could be allocated to that, as is done in Al-Anon meetings. Keeping things bottled up inside creates additional stress, which makes it harder on the body already undergoing too much.
I have been exploring web sites since December, and I have never seen any mention of any in-person support groups; it would be a wonderful idea.
It is my personal opinion from the research that I have done so far, that the actual number of persons with Morgellons is staggering; much higher than reports are giving. And as was posted on this same thread, I believe that we are the first to be witness to a new epidemic. The last I heard the other day, all persons reporting conclusions on the wine-peroxide test are positive.
Which leads me to one of my projects; the one I have been dragging my feet on, trying to figure out how best to do it. (Please don't ya'll all throw the tomatoes at me at the same time, I know it's off-topic, but I feel compelled to mention it here.) I have finally finished composing my letter, and now I am ready to send it to 535 people. All of the US Senators and Members of Congress. I had really wanted to send them snail mail until I realized how much it would cost in stamps. This is the letter asking them to request that the CDC notify all medical personnel about Morgellons, and the fact that they are investigating it.
This notion of DOP labelling is B.S. (pardon me.) The reason that I mention it here is that if there is anyone who hasn't heard about this yet, perhaps they might consider sending out even one email. I firmly believe that it is crucial to get the word out to all doctors, nurses, etc, as well as the general public.
I edit a few newspapers online, and have posted a few articles on Morgellons. This is something that you could do too, on the newspaper in your area through I think it's Topix.com ?
I have noticed that since December, Google and other search engine searches on Morg's produces an amazingly higher number of hits lately. This is a Good thing.
Karen