Support Groups

[KarenAnne]

Originally Posted by jonsi

A support group needs to:
(5) care packages, simple ones (epsom salt...some one mentioned that they were handing out care packages in Santa Cruz, CA, help me find that person/post, please?)

I need help with this. HELP! This doesn't have to be or should be specific to a foundation or region. We don't have to wait for info and help to trickle down. This can be a grass-root effort.
I know each of you have something you can share to make this a reality!

In the white light,
~joni

Hello Jonsi. It was Mookie.
It's been a while since I heard from him. He is extremely knowledgeable, and seems a dear, caring person. I'm sure he would welcome mail from you.
Karen

[jonsi]

Thank you Karen Anne and Carrie (you sound like the judges on "dancing with the stars" )

I'm going to take a break here while Franky is upgrading this site. (thank you Franky).

~jonsi

[carla]

Is anyone interested in this idea? Should I post this as a new post idea? Franky and all the other moderators, what do you think?

Thanks, Carrie

Carrie ,It might be better to wait until we moved sitwe and if you start a new thread I will stick it to the top of a board.I think we are changing over tonight or tomorrow.
carla xxxxxxxxxxx

[KarenAnne]

Originally Posted by chocket

Does anyone know how to reach the Board of Directors at the MRF, and who would be the key person to talk with in regards to having the MRF open their non-profit status to allow Chapters?
.....until someone who has clout ie: celebrity, $$... become infected or someone close to them becomes infected with Morgellons, will we see real wide-spread support.
Thanks, Carrie

Carrie, I have said that same thing many times ! (The clout thing.)
Here's some information, please forgive me if someone already answered it; I'm doing 2 things at once again, lol.
"The MRF is run solely by unpaid volunteers who are working from our own homes.
If you wish to email us, please use one of the following email addresses:"
General comments and questions:
contactus@morgellons.org

If you want brochures or feel that you can assist our efforts, please contact us at:
advocacy@morgellons.org

People from the media may contact us at:
media@morgellons.org

If you are a clinician, you may contact us at:
doctors@morgellons.org

If you are a scientist and would like to get involved in research, you may contact us at:
science@morgellons.org

Morgellons Research Foundation
PO BOX 357
Guilderland, NY
12084-0357

Board of Directors:
William T. Harvey, M.D., M.P.H., M.S., Chairman
Mary M. Leitao, Executive Director
Douglas Buckner, Ph.D., Associate Director
Janelle Fossen, Secretary
Dale Cowher, CPA, Treasurer
Roy Houchins

Medical Advisory Board
William T. Harvey, M.D., MPH
Geoffrey S. Ames, M.D.
Robert C. Bransfield, M.D., DFAPA, PC
Bradley Hope, M.D.
Rebecca Ricchi, RN, ARNP
Ginger Savely, RN, FNP-C
James L. Schaller, M.D., MAR
Raphael B. Stricker, M.D.
Todd M. Warden, M.D.

I have spoken to one of the members of the board in the past, and I have also exchanged a few emails through the advocacy address above. Turn around time for an email may take a few days. Their web site is Morgellons.org. Hope this helps a little
Karen

[KarenAnne]

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

[chocket]

Wonderful Idea! Letting all the Doctors know of the disease. Absolutely essential! You'd be surprised at how many people in Kaiser have no idea what Morgellons is, though there had been an email sent out to the personnel. When I have talked to people ie. Nurses, Doctors, call center...they admit that they had seen the email come in, but didn't really read it.

I also, like the idea of writing articles for local newspaper and web-news. I'd like to see a copy of the letter you'll be sending out KarenAnne. Let me know if there is anything I can help with.

Take care, Carrie/chocket

[chocket]

Hello Group Mems,

So far there has been some excellent suggestions as to how a group should be run, and I believe that can be accomplished. Help me here, but what I'm hearing is that a group that is structured similarily to AA-Al-Anon, where anonymity is priority would be the best route.

• 1. Group members would abide by anonymous guidelines
  2. A personal story each week/guest speaker.
  3. Written information and education provided in brochures.
  4. Latest/Breaking news.
  5. Emergency Intervention/Assistance ie:hotline/phone tree, care packages.
  6. Officers: To guarantee guidelines are observed and any offical business is maintained (Proper meeting guidelines should be established, and paperwork be specific and filed correctly).
  7. Committees: ie:New members committee (to introduce what the Support Group offers, to assist in introductions to other members.)Crisis Committee: To provide Care packages to set up hotline/phone buddies.
  8. A time for free for all-open mic. type questions/comments?
  9. Offer hope and always end the meeting with a prayer.
  

Did I miss anything?
Carrie/chocket

[jonsi]

Hello!

I had another friend contact me last week (second person in one month) who believes she now has morgellons.

I am pretty sure she does because of the symptoms she described and how she answered my questions. I asked her if she still had cats and she said "yes" After a few more questions I believe her kitties are sick too.

Neither one of these ladies has a spouse/partner who believes that Morgellons is real. So it is difficult to talk with them on the phone while their "other half" is in the room.

Well, I'm ready to arrange my first "support group" meeting. I'm not going to put anything in the paper, I will just make some phone calls (I have 8 names of people here in my small town that all told me they believe they are sick with Morgellons). I'm going to make a list of products/supplier info and a grocery list of items that they can buy at our local grocery store.

I'm thinking about having the meeting at my parents house. They have a deck on top of their house overlooking a deep canyon, with beautiful views of the Sangre de Cristo Mountains and the Jemez Mountains. Can't get much closer to our creator than that...! (I hope no one is afraid of heights )

I'll also give them this web-site address. This place is THE BEST!!! Thank you Franky and carla and everyone I have met here. The support and information found here is invaluable and if we can give those who are still suffering all alone a place to share, their lives will be much fuller knowing that they are not alone.

The song "Onward Soldiers" keeps popping in my mind, haha lol.

Peace and love, in the white light,
~jonsi

[KarenAnne]

If anyone can help with this, I sure would appreciate it.
When I was reading posts on Morg web sites last week, I read a post by someone in Dallas who said they were starting a support group.
I have searched and searched, and cannot find that person's post. I am not even sure which web site it was.
If any of you know the contact person, please pm me with the information.
Thank you so much.
hugs,
Karen

[Sadsack]

This is double posted from another thread:

The next Tampa Bay support group meeting has been moved up to SUNDAY JANUARY 18. The reason for this has to do with the anticipated CDC announcement sometime this month. It will be, once again, at the office of Dr. Reed at:
2605 W. Swann Street, Suite 100, Tampa, FL at 2:00 pm.
Please try to attend, and send this announcement to anyone else who lives in that general area. We MUST unite and organize.
It is not certain at this point, but it is anticipated that several interested doctors will attend the meeting as well. Some were at the first meeting, and it was fantastic to get medical allies in this horror.
Please help this cause by cross posting on other groups, such as Lymebusters (I am not a group member there), etc.
Thank you.
SS