Re: CFIDS Association of America

[Guest guest]

i, too, am discouraged by the recent direction of the cfids association. i

have always been happy for the existence of the cfids chronicle, but lately

i'm discouraged by that, too, since the new format just makes it look like a

glossy nonprofit publication that nobody will read. i wrote to the cfids

association about the publication itself, and was told that they are meeting

after the first of the year to evaluate the new direction the publication has

taken - so it's a good time to give them feedback. i suggest everyone who

has thoughts about this go to their web site (www.cfids.org), and find the

link for feedback about the cfids chronicle, or just write to the general

e-mail address. they ARE reading these, because they did write me back.

as for the emphasis on fatigue and other petty issues, my feeling is this:

there is NO OTHER disease in existence where every other study included a

group of people with clinical depression as well as a control group. the

constant focus on addressing the so-called controversy over the existence of

cfids, and the existence of the horrible symptoms that somebody else

mentioned, just reinforces the notion that there was, at some point,

something controversial. we need them to simply say - look, it's horrible.

people's lives are being stolen away. now let's focus on how to make it

better.

i often compare the emphasis on fatigue in cfids literature to the relative

lack of that word in the literature on gulf war syndrome, where lately most

descriptions focus on things like nerve damage to parts of the brain. i

don't understand why the cfids association continues to take this stance of

focusing on the f word. and that publication they just sent out - the one

with the pictures of people with CFIDS and their stories - i thought it had

some very redeeming things in it (the story of the 10-year old, and floyd

skloot's introduction were particularly good) but my friend looked at it,

then looked at me flat on my back in a feverish haze, and said, " why are none

of these pictures showing people bedridden? " it was then i realized the

pictures did not represent me, and my life, at all.

the national cfids foundation and the massachusetts cfids association (which

publishes the Update) both have good information. so do web sites like

about.com, which sends an e-newsletter to people with lots of good articles

and current information, and immunesupport.com, which - though commercial -

sends an e-newsletter that generally has links to good articles. there is a

new site for women with a cfids section called bellaonline.com, which is like

about.com and seems pretty good, but i haven't fully perused it yet.

Peggy Munson

Editor, Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome

http://www.angelfire.com/ri/strickenbk

[Guest guest]

> i, too, am discouraged by the recent direction of the cfids

association. i

> have always been happy for the existence of the cfids chronicle,

that went down the tubes many years ago ...

> link for feedback about the cfids chronicle, or just write to the

general

Actually, you may want to write to " The Common Cause " organization

and get their stuff instead. Its even recommended by Ken L.

> don't understand why the cfids association continues to take this

stance of

> focusing on the f word.

after all these years, you still don't understand what's happening

> Editor, Stricken: Voices from the Hidden Epidemic of Chronic

Fatigue Syndrome

Any ideas on which entities are responsible for hiding it ?

Fluffy

> i, too, am discouraged by the recent direction of the cfids

association. i

> have always been happy for the existence of the cfids chronicle,

but lately

> i'm discouraged by that, too, since the new format just makes it

look like a

> glossy nonprofit publication that nobody will read. i wrote to the

cfids

> association about the publication itself, and was told that they

are meeting

> after the first of the year to evaluate the new direction the

publication has

> taken - so it's a good time to give them feedback. i suggest

everyone who

> has thoughts about this go to their web site (www.cfids.org), and

find the

> link for feedback about the cfids chronicle, or just write to the

general

> e-mail address. they ARE reading these, because they did write me

back.

>

> as for the emphasis on fatigue and other petty issues, my feeling

is this:

> there is NO OTHER disease in existence where every other study

included a

> group of people with clinical depression as well as a control

group. the

> constant focus on addressing the so-called controversy over the

existence of

> cfids, and the existence of the horrible symptoms that somebody

else

> mentioned, just reinforces the notion that there was, at some

point,

> something controversial. we need them to simply say - look, it's

horrible.

> people's lives are being stolen away. now let's focus on how to

make it

> better.

>

> i often compare the emphasis on fatigue in cfids literature to the

relative

> lack of that word in the literature on gulf war syndrome, where

lately most

> descriptions focus on things like nerve damage to parts of the

brain. i

> don't understand why the cfids association continues to take this

stance of

> focusing on the f word. and that publication they just sent out -

the one

> with the pictures of people with CFIDS and their stories - i

thought it had

> some very redeeming things in it (the story of the 10-year old, and

floyd

> skloot's introduction were particularly good) but my friend looked

at it,

> then looked at me flat on my back in a feverish haze, and

said, " why are none

> of these pictures showing people bedridden? " it was then i

realized the

> pictures did not represent me, and my life, at all.

>

> the national cfids foundation and the massachusetts cfids

association (which

> publishes the Update) both have good information. so do web sites

like

> about.com, which sends an e-newsletter to people with lots of good

articles

> and current information, and immunesupport.com, which - though

commercial -

> sends an e-newsletter that generally has links to good articles.

there is a

> new site for women with a cfids section called bellaonline.com,

which is like

> about.com and seems pretty good, but i haven't fully perused it yet.

>

> Peggy Munson

> Editor, Stricken: Voices from the Hidden Epidemic of Chronic

Fatigue Syndrome

> http://www.angelfire.com/ri/strickenbk

[Guest guest]

> i, too, am discouraged by the recent direction of the cfids association. i

> have always been happy for the existence of the cfids chronicle, but lately

> i'm discouraged by that, too, since the new format just makes it look like a

> glossy nonprofit publication that nobody will read. i wrote to the cfids

> association about the publication itself, and was told that they are meeting

> after the first of the year to evaluate the new direction the publication has

> taken - so it's a good time to give them feedback. i suggest everyone who

> has thoughts about this go to their web site (www.cfids.org), and find the

> link for feedback about the cfids chronicle, or just write to the general

> e-mail address. they ARE reading these, because they did write me back.

>

> as for the emphasis on fatigue and other petty issues, my feeling is this:

> there is NO OTHER disease in existence where every other study included a

> group of people with clinical depression as well as a control group. the

> constant focus on addressing the so-called controversy over the existence of

> cfids, and the existence of the horrible symptoms that somebody else

> mentioned, just reinforces the notion that there was, at some point,

> something controversial. we need them to simply say - look, it's horrible.

> people's lives are being stolen away. now let's focus on how to make it

> better.

>

> i often compare the emphasis on fatigue in cfids literature to the relative

> lack of that word in the literature on gulf war syndrome, where lately most

> descriptions focus on things like nerve damage to parts of the brain. i

> don't understand why the cfids association continues to take this stance of

> focusing on the f word. and that publication they just sent out - the one

> with the pictures of people with CFIDS and their stories - i thought it had

> some very redeeming things in it (the story of the 10-year old, and floyd

> skloot's introduction were particularly good) but my friend looked at it,

> then looked at me flat on my back in a feverish haze, and said, " why are none

> of these pictures showing people bedridden? " it was then i realized the

> pictures did not represent me, and my life, at all.

>

> the national cfids foundation and the massachusetts cfids association (which

> publishes the Update) both have good information. so do web sites like

> about.com, which sends an e-newsletter to people with lots of good articles

> and current information, and immunesupport.com, which - though commercial -

> sends an e-newsletter that generally has links to good articles. there is a

> new site for women with a cfids section called bellaonline.com, which is like

> about.com and seems pretty good, but i haven't fully perused it yet.

>

> Peggy Munson

> Editor, Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome

> http://www.angelfire.com/ri/strickenbk

Peggy, What an exellent assesment of the situation. I was at first glance

pleased with this new publication from the CFIDS Assoc. too. Then when I got

into reading I began to realize how every truth was glossed over. I spent 2

YEARS throwing-up half the time when I stood up. And things have gone down-hill

from there. I've had better times, but the condition has gotten progressively

more dangerous. With heart involvment etc.

I know there are other good organizations, thank God, but as far as I know

the CAA is the only one presenting themselves to the government as our

representative. This is my primary concern.

The last time I sent an email to the Assoc. it bounced back with a message

that they only respond to requests for information. Maybe I used the wrong

address. I will try again so that I can voice my personal concerns.

Thanks,

Judy R.

[Guest guest]

I would have no problem signing this but I dont like to sign potitions were so

much personal info. is required.

name and state should be plenty.

I think you would get more signer's if you didn't require all this

information. I can drop a letter or two in my name (trick many lawyers use) and

list my state but I just am not going to fill out all the info. you are asking

for.

>

> I don't know whether everyone here identifies with having Chronic Fatigue

Syndrome, but I know that a lot of people do.

>

> I personally believe that everyone with CFS has mold illness but that many do

not realize it and thus, unfortunately, aren't doing any avoidance. Obviously,

that would result in their being very sick.

>

> In any case, CFS is a disease that's getting a lot of media attention (it was

on the front page of the Wall Street Journal on Saturday). Since it seems at

the very least closely related to mold, it seems important to make sure it's

represented well.

>

> Many people in the CFS community have become concerned about the ways in which

the disease has been represented. This recently has centered upon the main

official support organization, the CFIDS Association of America.

>

> A petition from individuals unhappy enough with this organization to have

decided to disassociate from it is here:

>

>

http://www.change.org/petitions/petition-to-disassociate-from-cfids-association-\

of-america-as-our-advocacy-representative#?opt_new=f

>

> A commentary I wrote on problems with the organization is here:

>

> http://cfsuntied.com/blog2/2011/03/08/the-caa-and-advocacy-a-guest-commentary/

>

> Best regards,

>

> Petrison

>

[Guest guest]

Excellent commentary. I've had CFS for 15+ years from toxic mold

exposure. My family didn't believe my condition until my pituitary

brain tumor was discovered! Then they exclaimed " We told her to push

herself, but she couldn't do it! " It's not until you have something to

physically pinpoint that CFS is recognized. The interesting thing is

that the advent of the tumor coincides with the mold exposure. The

neurosurgeons can tell by the size of it and something about the bone

it envelops as it grows.

Mycotoxin attack would be a great research project for any

neurological department of a university. I pray that someone launches

a zombie quest.

Barth

www.presenting.net/sbs/sbs.html

SUBMIT YOUR DOCTOR: www.presenting.net/sbs/molddoctors.html

---

Copyright 2011. The content of this post is considered the property

of the author and shall not be reproduced, copied, or shared with

another e-mail list, public forum, or individual without the written

permission of the author. All rights reserved.

S> I don't know whether everyone here identifies with having Chronic Fatigue

Syndrome, but I know that a lot of people do.

S> I personally believe that everyone with CFS has mold illness but that many do

not realize it and thus, unfortunately, aren't doing any avoidance. Obviously,

that would result in their being very

S> sick.

S> In any case, CFS is a disease that's getting a lot of media attention (it was

on the front page of the Wall Street Journal on Saturday). Since it seems at

the very least closely related to mold,

S> it seems important to make sure it's represented well.

S> Many people in the CFS community have become concerned about the ways in

which the disease has been represented. This recently has centered upon the

main official support organization, the CFIDS

S> Association of America.

S> A petition from individuals unhappy enough with this organization to have

decided to disassociate from it is here:

S>

http://www.change.org/petitions/petition-to-disassociate-from-cfids-association-\

of-america-as-our-advocacy-representative#?opt_new=f

S> A commentary I wrote on problems with the organization is here:

S>

http://cfsuntied.com/blog2/2011/03/08/the-caa-and-advocacy-a-guest-commentary/

S> Best regards,

S> Petrison

[Guest guest]

>

> I would have no problem signing this but I dont like to sign potitions were so

much personal info. is required.

> name and state should be plenty.

> I think you would get more signer's if you didn't require all this

> information. I can drop a letter or two in my name (trick many lawyers use)

and list my state but I just am not going to fill out all the info. you are

asking for.

http://www.change.org/petitions/petition-to-disassociate-from-cfids-association-\

\

of-america-as-our-advocacy-representative#?opt_new=f

I've been told that some people put in an incorrect street address -- e.g. 111

Main Street.

Apparently the e-mail address does need to be working though.

Thanks for considering signing it.

Best,

[Guest guest]

I signed the petition, I've always had issues with this association.... until I

see an association connect the toxic exposure to ME/CFS and recognize that

mycotoxicosis and ME/CFS are actually the same illness (in my opinion,

experience and 8yrs. of research) then to me they are doing a dis-service to the

public!

~Dana

>

> I don't know whether everyone here identifies with having Chronic Fatigue

Syndrome, but I know that a lot of people do.

>

> I personally believe that everyone with CFS has mold illness but that many do

not realize it and thus, unfortunately, aren't doing any avoidance. Obviously,

that would result in their being very sick.

>

> In any case, CFS is a disease that's getting a lot of media attention (it was

on the front page of the Wall Street Journal on Saturday). Since it seems at

the very least closely related to mold, it seems important to make sure it's

represented well.

>

> Many people in the CFS community have become concerned about the ways in which

the disease has been represented. This recently has centered upon the main

official support organization, the CFIDS Association of America.

>

> A petition from individuals unhappy enough with this organization to have

decided to disassociate from it is here:

>

>

http://www.change.org/petitions/petition-to-disassociate-from-cfids-association-\

of-america-as-our-advocacy-representative#?opt_new=f

>

> A commentary I wrote on problems with the organization is here:

>

> http://cfsuntied.com/blog2/2011/03/08/the-caa-and-advocacy-a-guest-commentary/

>

> Best regards,

>

> Petrison

>

[Guest guest]

When I was first ill long ago I thought of myself as having CFS although I never

received a diagnosis for it. I could get no other diagnosis that gave a name to

my illness until I finally received one for fibromyalgia. A friend of mine also

has CFS though she prefers to call it CFIDS. But no info I ever read about CFS

or FMS she gave me ever gave me any hope they would find the cause. I always

felt they were looking in the wrong direction, always wanting it to be a virus.

I always felt it must be more about toxins or about the body not being healthy

somehow.

When I finally found out I had candida overgrowth I felt this must be the cause

of CFS. But now I think it must be candida overgrowth, constant low or

infrequent high dose chemical exposure from our indoor and outdoor environments

and also mold//biotoxins from indoor environments. When the immune system is

depleted it just can't defend the body from all these onslaughts.

Yes, people with CFS have antibodies to viruses in their bodies, everybody does.

Yes, I think a virus can be the straw that breaks the camels back, but not the

cause of CFS. In hindsight I can see that I have always suffered from candida

overgrowth, and who knows, maybe my bedroom was moldy growing up, and we

certainly occasionally used bug spray, pesticides, and whatever else. I think

maybe that is why when I was 17 and had a flu my immune system had had all it

could take, because I have been tired every day of my life since then.

My nephew is 17 and he is tired all the time. I know he has candida and he

sleeps in a moldy room. I shudder to think what his health will be like a few

years down the road. I have lost all credibility with my brother's family so I

can't even speak of these things with them.

I was surprised at first when I read that some consider CFS, FMS, Lyme disease

and MCS to all be the same thing, because I was not reactive to my environment

for two decades with CFS, but now I think they are all the same thing. As I

look back I remember more and more things, like how I always got a kind of

lightheaded headache when I was a girl from driving in my dad's cadillac. I

could kind of smell the whatever it was in the leather upholstery of the seats.

I also felt awful every time after shopping at my parent's favorite store White

Front. I remember feeling bad immediately on entering the store and the smell

in there and would feel kind of nauseous from the smell of the popcorn machine

near the entrance. I could always smell the aisle the pesticides were on just

walking passed it at the end and did not feel good if I had to walk down that

aisle.

I have received as diagnoses in my life irritable bowel syndrome, anxiety

disorder, fibromyalgia, mercury toxicity, lyme disease, and candida overgrowth.

Yes, I think CFS, FMS, Lyme and MCS are all in a way the same kind of thing and

that's why I don't think they will ever find the cause of CFS/ME.

anita

>

> I don't know whether everyone here identifies with having Chronic Fatigue

Syndrome, but I know that a lot of people do.

>

> I personally believe that everyone with CFS has mold illness but that many do

not realize it and thus, unfortunately, aren't doing any avoidance. Obviously,

that would result in their being very sick.

>

> In any case, CFS is a disease that's getting a lot of media attention (it was

on the front page of the Wall Street Journal on Saturday). Since it seems at

the very least closely related to mold, it seems important to make sure i

5c8

t's represented well.

>

> Many people in the CFS community have become concerned about the ways in which

the disease has been represented. This recently has centered upon the main

official support organization, the CFIDS Association of America.

>

> A petition from individuals unhappy enough with this organization to have

decided to disassociate from it is here:

>

>

http://www.change.org/petitions/petition-to-disassociate-from-cfids-association-\

of-america-as-our-advocacy-representative#?opt_new=f

>

> A commentary I wrote on problems with the organization is here:

>

> http://cfsuntied.com/blog2/2011/03/08/the-caa-and-advocacy-a-guest-commentary/

>

> Best regards,

>

> Petrison

>