New Member

[Guest guest]

Welcome Tina!

This is a great group. I look forward to hearing more from you. I am

English and I have had CFS for about 20 yrs and been diagnosed for 3.

English

[Guest guest]

>Thankyou Sandrea, I look forward to getting to know you!

Welcome to the group . I am Sandrea. I am single and live with

> 3 dogs and 3 cats. I was diagnosed with CFS about 3 years ago and fibro

> more recently. I haven't worked since May 2004 and stay home mostly. I

> was a librarian and prior to that a speech therapist. I have found the

> folks in this group very friendly and hope you will as well.

> Sandrea

>

[Guest guest]

>Thankyou Aylwin!

Welcome , you've come to the right place. Aylwin

>

>

>

[Guest guest]

Hi and Welcome:

I too live in Missouri. St.Louis to be exact. I first came down with CFS in

1996 and made a full recovery after two years. Thought I was healed and it all

behind me, but then had a relapse after a sinus surgery in 2001. Have now had

CFS again for 6 yrs. And in April will be undergoing my 3rd sinus surgery.

What part of Missouri do you live and are you able to work? Since 2001 I

returned to work part time for a couple of years and then got to the point where

I could no longer be dependable with the health issues and now I don't work at

all.

Take care and again, welcome!

Kim

[Guest guest]

Hi ,

I've been quiet for a while but am back now and would like to welcome you here.

Hope you enjoy the group and I look forward to getting to know you better.

Doreen

[Guest guest]

Welcome. I also live in South Florida and would love to meet or at least

communicate with those here in Florida.

Blair

[Guest guest]

Hi Thank you Aylwin, you have gave me a bit of hope today. Having a really bad

day today it is very Hard watching your child in pain and feeling hopeless that

you can do nothing. didn't get to sleep until 5.30am. 's paed has

been brill but she's not an ME expert, and I would disagree on a few things she

has put to us ie phycaitry, as i had a really BAD experience with my other son

Conor who is now 15. Conor took a virus at the age of 7 and has never been the

same since, so called medical proffessionals had him sucidal. So that is a NO GO

AREA FOR DAVID.

I am convinced ME is GENETIC, although alot of people will argue with this.

Previously to taken ill, he won the National Champions in Ju-Jitsu, was

a keen rock climber and in boy scouts and Trampolining. NOW HE'S HOUSEBOUND

ALMOST 2YRS (sad isn't it?)

Sorry I didn't mean to ramble on!!!!!!

How are you? Have you made no improvement?

Talk soon

Take Care

Antoinette

Aylwin wrote:

Hi Antoinette, Welcome to the group! I just wanted to say that my son

had

ME for 3 years, ages 10 to 13, and he was also housebound, had to carry him

to the loo. We had a lot of problems with doctors saying he was a " shirker " ,

even though he was very ill.

[Guest guest]

HI Tina and Misty, I'm Also new I'm the mother of 13yr old ME sufferer ,

housebound almost 2yrs.

TC

Antoinette

Misty wrote:

Tina,

Welcome to the group. I'm kind of new here myself, I've only been

here a week or so.

I'm 46, divorced (but in love with a great guy named, Dean) I live in

south Florida with my 83 year old mother.

[Guest guest]

>Thankyou Doreen! I would like to know how many of you have the symptom

of feeling like you have a bad flu all the time, and what do you do about

it, or is there anything?

Hi ,

>

> I've been quiet for a while but am back now and would like to welcome you

> here. Hope you enjoy the group and I look forward to getting to know you

> better.

>

> Doreen

>

>

[Guest guest]

>Hi Kim, I'm so sorry the CFS came back. I live in Peculiar, just outside

of Kansas City. I worked for 7 years at American Century, quit since I

was having my 3rd child, after he was born was when I got sick. I worked

part-time at my mother's business she used to have, but I have not worked

for almost 3 years. I actually have a disability hearing sometime soon.

Can anyone tell me what to expect from this hearing? I was denied the

first time, so now I have a lawyer, anyone been denied with a lawyer?

Hi and Welcome:

>

> I too live in Missouri. St.Louis to be exact. I first came down with

> CFS in 1996 and made a full recovery after two years. Thought I was

> healed and it all behind me, but then had a relapse after a sinus

> surgery in 2001. Have now had CFS again for 6 yrs. And in April will

> be undergoing my 3rd sinus surgery.

>

> What part of Missouri do you live and are you able to work? Since 2001

> I returned to work part time for a couple of years and then got to the

> point where I could no longer be dependable with the health issues and

> now I don't work at all.

>

> Take care and again, welcome!

>

> Kim

>

>

[Guest guest]

Thank you for the welcome Antoinette! It's really nice to meet you, everyone

here seems so friendly!

Tina/KY

[Guest guest]

Pleasure to meet you ! Thank you so much for the nice welcome!

Tina/KY

[Guest guest]

Hi Antoinette, Tina and Misty. I joined not too long ago myself, been quiet for

a while because of oral surgery and recovery. Hope you enjoy it here and I look

forward to getting to know you all better.

Doreen

[Guest guest]

Hi Sara,

Sorry you've been sick so long, but I was wondering if I would find anyone else

here like myself. I've had CFS and related illnesses for well over 30 years. I

think it all began 'first' was panic syndrome. It was 1989 when I finally got

diagnosed with the fatigue problem, by a naturopath.

At first, megavitamin IVs were helping, but that sort of leveled itself out and

then quit having any effect.

Doreen

Eugene, Oregon

Re: new member

Welcome Antoinette,

This is a great group. I hope you find the same kind of support that I have

here.

I am English and I think I have been suffering from CFS for over 20yrs

but finally diagnosed 3 years ago.

English

[Guest guest]

Doreen, I have that all the time and all I really know to do is collapse in

bed all day. I hate it!

English

Re: Re: new member

>Thankyou Doreen! I would like to know how many of you have the symptom

of feeling like you have a bad flu all the time, and what do you do about

it, or is there anything?

Hi ,

>

> I've been quiet for a while but am back now and would like to welcome

you

> here. Hope you enjoy the group and I look forward to getting to know you

> better.

>

> Doreen

[Guest guest]

Hi !

That's exactly how I describe it. I just wish I could have people be in my body

for a couple of hours just so they know what I mean.......

I usuallydescribe it as:

" I feel like I'm 80 years old and just ran a marathon with a bad case of the

flu "

(I'm in my early 40's, btw) If this is what the 40's feel like what is 80

really going to feel like? Or won't we live that long?

Another way I would describe it is - I just feel " poisoned " sometimes.

There is just no getting people to understand iunless they have this.

From a fellow " flu " sufferer ~

Kate

-------------- Original message --------------

From: metzdorf@...

>Thankyou Doreen! I would like to know how many of you have the symptom

of feeling like you have a bad flu all the time, and what do you do about

it, or is there anything?

>

>

[Guest guest]

Hi Antoinette, yes it's hell, worse than having it oneself, to watch your

child suffer. At the risk of being forward, it sounds like your other son

may have ME or a similar post viral syndrome. In my opinion it is genetics

plus toxins (pesticides, car exhaust, whatever), sets the body up for an

infection like this. That was my analysis of the experience. And I've got to

tell you, seeing my son strong, doing construction, bristling with muscle

and vitality, with a full social life and so on, just makes the world OK

again for me, even though I remain so ill.

It is sad, all you can do is care for him/them as best you can, and try to

protect them from the worst of the ignorant docs. Sometimes alternative

treatments such as good Chiropractic, NAET (as has been written about in

this group, it's amazing what obscure allergies can contribute, plus one

develops them with ME) can be helpful. I don't know about the paediatric

book, I'm hoping the person who mentioned it will repost it. Then you could

give it to your child's doc!

Feel free to email me privately if you like, and don't ever worry about

venting, I can take it! (Oh I can dish it out too <grin>). NEVER give up

hope! It's so important to take care of yourself as well, so you can take

care of them. Sending you waves of strength and comfort. You are not crazy

and neither are your kids. Aylwin xo

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of antoinette christie

Sent: Wednesday, March 21, 2007 4:20 AM

To: CFAlliance

Subject: Re: Re: new member

Hi Thank you Aylwin, you have gave me a bit of hope today. Having a really

bad day today it is very Hard watching your child in pain and feeling

hopeless that you can do nothing. didn't get to sleep until 5.30am.

's paed has been brill but she's not an ME expert, and I would disagree

on a few things she has put to us ie phycaitry, as i had a really BAD

experience with my other son Conor who is now 15.

[Guest guest]

> Hi Kate, I like your " poisoned " way of describing it. I feel like my

body is infected with disease. I too feel like I am 80, I am 34. I

can't imagine what I will feel like at 80, if I'm here that long.

Hi !

> That's exactly how I describe it. I just wish I could have people be in

> my body for a couple of hours just so they know what I mean.......

> I usuallydescribe it as:

>

> " I feel like I'm 80 years old and just ran a marathon with a bad case of

> the flu "

>

> (I'm in my early 40's, btw) If this is what the 40's feel like what is

> 80 really going to feel like? Or won't we live that long?

> Another way I would describe it is - I just feel " poisoned " sometimes.

> There is just no getting people to understand iunless they have this.

[Guest guest]

, Doreen Aspirin or Tylenol helps me with this.. Aylwin

_____

From: CFAlliance [mailto:CFAlliance ] On

Behalf Of sarah

Sent: Wednesday, March 21, 2007 12:04 PM

To: CFAlliance

Subject: RE: Re: new member

Doreen, I have that all the time and all I really know to do is collapse in

bed all day. I hate it!

English

[Guest guest]

Hi Doreen,

Well I had a baby and then pneumonia when she was 2 weeks old and that was 25

yrs ago and that was when I first got the CFS. Though I ignored it and just

kept on going like I had done before. Then about 8 yrs later I got diagnosed

with Lupus!!!!! Two years ago fibro!!!!!!! Having a really bad flair of the

Lupus-I think. It is so hard to know which is the condition causing all the

extreme fatigue at the moment. I see the Rheumo on Monday-but fairly sure he

does not believe in CFS-not that he has said anything but...........you know

that look??? heheheheee Guess I will have to give in and take cortisone-I am

going to look like a beached whale-which is NOT a pretty sight. lol

Regards nerida

Send instant messages to your online friends http://au.messenger.yahoo.com

[Guest guest]

I always wonder if we feel similar to chemo patients without the hair loss.

Having never gone through chemo, I don't know.

English

[Guest guest]

>

> >Thankyou !

>

>

>

>

>

>

> Welcome ! I look forward to hearing more from you.

> >

> > English

> >

>

welcome rachel

iknow you will like this group

god bless

marianne

mo

[Guest guest]

There's a small mistake here. I didn't post that, I was being spoken " to " in

this regard. I don't get this feeling, thankfully; I have enough other stuff.

Doreen

RE: Re: new member

Doreen, I have that all the time and all I really know to do is collapse in

bed all day. I hate it!

English

[Guest guest]

We should never know about chemo. I just got off the phone with my best and

oldest freind who is dying of Lung Cancer. I know this is not a picnic but to

talk with her breaks my heart.

Blair

[Guest guest]

Hi Nerida, I should just MMOB but thought I might mention that it's my

understanding that cortisone is hell for the immune system (science types,

weight in here).have you tried anything natural/alternative first? I'm

taking Turmeric (yes the spice) which, in adequate doses, is an excellent

anti-inflammatory. I was quite allergic until recently, we NAET'ed it so I

could take it. Still working to build the dosage as I must do with all mew

meds, herbs etc. I know that cortisone can be so helpful.as a last resort.

Just an opinion/choice/something to think about? Tell me to keep it to

myself if you like! Just Take Care, Aylwin