I was nice in my reply but now I am discusted

[Anna R. Key]

Re: Want a Cure? Thread. I read thru all the ******. Man, disappointing. Please do not make me regret joinging this forum.

*********************** All that time back n forth back n forth should be used to pin down the side stepping Dr.s.

Do any of you bring your Drs these articles from teh CDC and the actual press conference? What do they say? Mine try and pass me off or fluff me off. Which is unacceptable and leads to Dr Strong, paging Dr Strong. Security.

Which in my mind is cool. Cuz they know, that I know, they are lazy and passing the buck and now they are chicken **** sissys too boot.

And when it is all said and done. I will confront them yet again.
Call them out on the fact as Drs they took an oath.

We all can't be kissing cousins and we all can't be crazy. ANd the CDC ain't into spending money or setting up camp for a year unless there is a reason more valid than internet mayhem and psycho behavior.

Fricken call, write, and call Kaiser and Michelle Pearson everyday. She was here., I know her. She is aware. Everyday. Call Dr Joe Selby at Kaiser Oakland Research. He is there. Hassle him.

He is how I found out they found NO COMMON INFECTION IN ANY OF US.

I had to ratlle him to get that. So if you guys all rattle them then maybe we can get answers.

Joe V. Selby, MD, MPH
Kaiser Permanente Division of Research
2000 Broadway
Oakland, CA 94612

(510) 891-3400 (phone)
[

09:45 National Nosocomial Infection Surveillance
System (NNISS): The Paradigm
Dr. Michelle M. Pearson
10:15
800-CDC-INFO
(800-232-4636)
TTY: (88 232-6348
24 Hours/Every Day
]

Hassle them. Repeatedly. Use your energy for them. Not each other. PLEASE.

[Anna R. Key]

Disgusted. The. I can't spell whether I am sick or not but don;t want it to effect my credibility. Which is I am a hostile ***** that is very ill and needs to get well. Wants to get well. AND needs help in doing so.

[jonsi]

Wow, Anna, you are one mad girl!

But I hear you, understand your frustration at the good old MD's. Please introduce yourself (have you?) so we can get to know you and learn what your symptoms are. This "M" has many different affects on each of us.

There are so many new members here that it's hard to differentiate between the real "Morgies" and other people just looking for a forum to go off on.
Introduce yourself, K?

itwl,
~jonsi

[fracty]

Anna,

Thanks for all your energy and for trying to get us back on track! As always you have great ideas and great energy as is evidenced in your many great comments here and at other sites.

[Sadsack]

Anna -

I second Fracty's comments.

Far too much time and energy is spent going after each other....time and energy that could be spent poking the people and agencies who are responsible for finding the answers.

Our little community needs to get more unified and activism-oriented. I don't exactly know why it is, but too many of us do not seem to want to unite in any kind of meaningful way. Opportunities are presented at various times, but just drift away without action.

Most new diseases get the attention they require as a result of grass-roots activism. Your heart is in the right place; I hope more heed your message.

SS

[xiblanque]

I agree with this quote from Sadsack...."Most new diseases get the attention they require as a result of grass-roots activism."
I am new here but have wondered how AIDS, Fibromyalgia and Chronic Fatigue etc... first got the media attention, funding and legitimaticy/validation as REAL diseases... does anyone know??? the first AIDS walk... the first charitiable campaign...etc. These past events may serve as some kinda template for all of US. We don't need to re-invent the wheel..... others have been down other horrid paths like the one we are on and we could perhaps "Stand on the Shoulders of Giants". I know some of us have media connections.... others have perhaps celebrity connects... still others have connections in the various fields of science.... We could start a thread for BRAINSTORMING these various ideas and try to organize in a cohesive manner to bring the much needed attention and funding..... I don't know... but I've never been exposed to such valiant, passionate and intelligent people before... maybe i'll start a post called Brainstorming on Grassroot Activism....
get it together people....
Xiblanque

[Sadsack]

Sounds good! Go for it!!!

SS

[Baraka Obam]

Without any proof of the vector of this disease you have people saying mainly BUGS with no proof at all, bugs and parasites are in everyone, its easy to get them and some times because of the sheer number of different types, hard to find them.

There is NO proof, even thoug I have found one very suspisious type of worm in myself it was from dilligence, does anyone else have this kind, nobody knows, because there are few of us with microscopes. Then even if you had a microscope finding this ONE actually moving microscopic WORM was a JOB. I could have easily missed it, and where there is one there are more, BUT WHERE. I am getting carried away with the bug thing that is not my point really.

The other very important thing that needs to be addressed is this, it is pure folishness to think we all have somthing different, the symptoms in time are the same. In my life I have been thru the ringer. is there somthing I have not had, its doubtful.

Here it is in a nutshell, if we all have bugs and we can not produce the bug vector and we are all not suffering a disease that is progressive with the same symtoms in time as others PRIMARILLY, why should we band together at all, how can we fight a 75 symptom disease, LETS BE REAL!! Untill the people here open their eyes and see we are the same, the vector of the problem has not been found, maybe there are more than one, most likely, maybe they are symbiotic, possibly able to trade DNA, that is not only possible there are things able to accomplish this already.


So if you have icky mala mala and eye problems , I have exzema and eye problems, she has hair loss and icky mala mala, the children have rashes and learnig problems, and everyone of us has fibers in our urine, blood, skin, eye fluid, lets just imagine we do know somthing about this disease, we know more than one thing, there are piles of similar positives and one for sure, FIBERS. Fibers are easy to find with a microscope. Maybe we need to start there with the known things.

When I hear we all have different symptoms, thus a different disease, it offend the fact that god gave us a brain The list of my symptoms was massive, the longer I live the longer it got, whats NEXT will I too get icky mala mala.

[belle9]

Sadsack,
I will unite with anyone here to get something done. I'm not going down without a fight and not with anyone on this forum I want to fight the people responsible for this and for telling my docs to diagnose me as a looney tune, for making me so ill, and covering this up. I have posted my name on petitions and other things. I would write Senators or Congressman, but I'm from Ga. and that would be useless (I'm not wealthy). I think a few are frightened because if they "come out" they could lose their jobs. I am open to suggestions on ways to help.

[Sadsack]

Belle -

How far from Atlanta are you? (home of the CDC).

Some people suspect that "the big announcement" might be made in their annual meeting in May (18 & 19 I believe). I'm a bit sketchy on the details.

Anyway, there may be a call for a demonstration in front of the CDC if we are once again left in the lurch.

Think about it and be prepared. Get that oil change you've been putting off!

SS