support group meeting in Tampa

[Sadsack]

Carolyn -

You did just fine on your first post. Take some deep breathes and try to calm yourself, and you will find your way through the board. I will email you in case you don't see this.

We are here for you!

SS

[Sadsack]

A new "regular" day of the month will go into effect with the next meeting.
Instead of being the last Sunday of the month, it will now be the first Sunday AFTER the first Friday of the month.
So in Feb (the next meeting), it will be February 7.
Up until May, it will be the first Sunday of the month. In May, the first Friday will be the 7th, and so the meeting will be on the 9th, which is the second Sunday.
But don't worry about all that. Just remember the first Sunday of the month; as usual, notices will always be sent out ahead of time.
[The reason for this change is that Dr. Reed holds her Morgellons clinic on the first Friday of the month. Many of the people she sees drive great distances for the appointment, and opt to stay in a hotel for a couple of nights afterwards in order to get to at least one meeting.]

So...as I said, the next meeting will be SUNDAY FEBRUARY 7, 2010 at the usual time of 2:00 p.m. at the following location:

Office of Dr. Cheryl Reed
2605 W. Swann Ave., Suite 100
Tampa, FL 33609

Be there or be square

SS

[Sadsack]

Just wanted to bump this up and remind FL residents that the next meeting is one week from today - Feb 7.

SS

[jonsi]

Hi Sadsack!

I'm so glad you have kept these support meetings going.

Could you please share with us who can't attend (but I really want to) what you discuss at your meetings?

Thank you.
Love, itwl,
~jonsi

[Sadsack]

Hi, Jonsi -

Each meeting is different. Sometimes we have a structured agenda, like when we did the live blood analysis.
Usually, the meetings are somewhat structured in that I will bring new information to the group about research, treatments, products, media releases, etc.
For example, we've had a zapper demonstrated, an Eyeclops that projects onto a TV screen (and were able to see microscopic fibers), an ozone machine. We've had a few people who distribute products that we know are helpful to our condition discuss their products.
We have even had interested doctors attend.
The unstructured part of the meetings is really about sharing and support.
We have been meeting about a year and a half now. The attendance is irregular for a variety of reasons, including distances that people have to travel, being too sick to attend, some have moved out of state, transportation issues, etc.
But, unfortunately, there are always new people.
I don't know why the number of registered affected families (on MRF and OSU websites) hasn't exploded. Within our small geographical area, we have new people popping up on a regular basis.
I really wish people would register, regardless of how they feel about those organizations. We have to make it know, somehow, just how many of us there are.
Thanks for asking, Jonsi. If anything new emerges from one of these meetings, I will pass it on.

SS

[Bee]

I didn't register because I don't trust my government.I'm sure that's why others don't either.

[Sadsack]

Bee -

I don't either, but if they want to know who we are they can hack these groups as easily as they can hack MRF or OSU.

And at this stage of the game, I don't give a rat's ***. My really paranoid side says they already know, anyway. I can't believe I could "just pick up" Morgellons unless it is 1) everywhere and everyone has it or 2) we are targeted.

SS

[fracty]

THANKS for sharing abuot the meetings SS! You have no idea how much you help me just here on the site and I want to thank you for that and keeping the meetings going!!

I don't know why the number of registered affected families (on MRF and OSU websites) hasn't exploded.

Like Bee, I have never registered anywhere either. And a bit into this "adventure" I really wish I DID have somewhere to add myself to show the size of these numbers.

This will sound weird, but I could have SWORN when I first finally decided it was M after ruling it out a billion times because IMO some sites had inaccurate descriptions (I KNEW I did not have a skin D/O. I knew I was DESPERATELY sick inside most of all) ... I could have SWORN the site said DO NOT register. I think it was MRF. I do know I was at some site that said they did not want anyone else registering.. they already had enough or something.

lol... Now that sounds weird to think someone would purposely hijack the site. maybe they did. Maybe I misunderstood. Maybe it was some random comment or site.

Also some time around teh beginning I debated about registering anywhere because I was afraid they might use it to deny me medical coverage in the future - either via pre-existing illness or DOP. At first I did not thinkg there was anything being covered up. I thought Drs and teh CDC would be fascinated with this and rush to help me. lol.

WEll, I guess we all need to register and we all need to advertise it. I bet only one in one hundred here is registered. Maybe less.

I know I am moving at negative 50 miles an hour, but when I sign up maybe I will start a new thread here w the direct links and hopefully others will sign too. We have to band together on this thing.

[Sadsack]

Hi, Fracty -

Thank you for saying so. I try to help when I can.

I took a couple of days off from "Morgellons". Just needed a mental break so I probably missed a lot.

Here's the MRF registration page: Registration Page - Morgellons Research Foundation®

And here is the OK State Univ registration page: https://centernet.okstate.edu/morgel...gistration.cfm

It took over a year for me to even realize why I should register. I finally did do it, though....

SS

[paddel]

Will there be another rally in Atlanta, anytime. So that we can fight the cdc to get recognition for this illness.

Paddel