Re: Re: Program Reverses FMS symptoms

[Guest guest]

Having looked at the slides (but not the text) on this website, I'm not so much

impressed with the pictures of people there or the biblical stuff, but the

theory behind whatever protocol this is.

It rings a big bell with St. Amand's book on guaifenesin, which that doctor

purports is removing excess inorganic phosphates (Pi). Oddly, I felt not 100%

but improving while I was taking B12 and

guai; however, I don't know how much of this was also a delayed benefit from my

antibiotic for Chlamydia.

- N.

[Guest guest]

Sorry, I'm on Jim's side here. There are some people who find a payoff

from things that seem negative on the surface. Sometimes it is conscious

and sometimes it is not. Maybe they have been sick so long, they are

afraid to work again or to not be sick again. Maybe they do like the

attention, or whatever. It is not farfetched to say this exists, nor do I

think is it insulting for Jim to say so. If you don't think this applies

to you, ignore it. But I completely agree with him. It doesn't mean this

illness is psychosomatic or anything like that.

Cindi

just_tim_ca@...

07/03/01 08:50 PM

Please respond to

cc:

Subject: Re: Program Reverses FMS symptoms

>

> There are a number of people with FMS (none on this list) that

> actually get some kind of payoff from having the condition, Maybe

it

> gets them some kind of sympathy or attention from family members

that

> they would not get otherwise. Maybe its the commaradery of being

part

> of an FMily, others just can't understand. If your getting some

kind

> of payoff from the condition, you will never get better until you

> overcome the need for that payoff.

Jim,

That is an obscene and ignorant comment. I don't have fibromyalgia,

but would like to know is the " payoff " involved? Disability?

Getting to lay around all day? Victim mentality? So, to get better

one should discontinue disability benefits etc. and follow your

program? Okay.

I went from executive level to my parents couch with CFS in about

three months. Fortunately my symptoms are not quite that bad

anymore. It is BECAUSE of sympathy, support, and attention from

family that I am no longer confined to bed most of the day.

I usually ignore ignorance but felt the need to respond given the

fact that you are soliciting AND making idiotic comments. Until you

know what it really feels like to struggle for health, hope, and some

level of happiness, your generalizations, assumptions, and miraculous

cure claims are beyond any level of credibility.

Tim

[Guest guest]

Sorry, I didn't make it clear. I don't agree with everything Jim said at

all. I am just responding to this one issue which was raised.

Cindi

canderson@...

07/05/01 04:45 PM

Please respond to

cc:

Subject: Re: Re: Program Reverses FMS

symptoms

Sorry, I'm on Jim's side here. There are some people who find a payoff

from things that seem negative on the surface. Sometimes it is conscious

and sometimes it is not. Maybe they have been sick so long, they are

afraid to work again or to not be sick again. Maybe they do like the

attention, or whatever. It is not farfetched to say this exists, nor do I

think is it insulting for Jim to say so. If you don't think this applies

to you, ignore it. But I completely agree with him. It doesn't mean this

illness is psychosomatic or anything like that.

Cindi

just_tim_ca@...

07/03/01 08:50 PM

Please respond to

cc:

Subject: Re: Program Reverses FMS

symptoms

>

> There are a number of people with FMS (none on this list) that

> actually get some kind of payoff from having the condition, Maybe

it

> gets them some kind of sympathy or attention from family members

that

> they would not get otherwise. Maybe its the commaradery of being

part

> of an FMily, others just can't understand. If your getting some

kind

> of payoff from the condition, you will never get better until you

> overcome the need for that payoff.

Jim,

That is an obscene and ignorant comment. I don't have fibromyalgia,

but would like to know is the " payoff " involved? Disability?

Getting to lay around all day? Victim mentality? So, to get better

one should discontinue disability benefits etc. and follow your

program? Okay.

I went from executive level to my parents couch with CFS in about

three months. Fortunately my symptoms are not quite that bad

anymore. It is BECAUSE of sympathy, support, and attention from

family that I am no longer confined to bed most of the day.

I usually ignore ignorance but felt the need to respond given the

fact that you are soliciting AND making idiotic comments. Until you

know what it really feels like to struggle for health, hope, and some

level of happiness, your generalizations, assumptions, and miraculous

cure claims are beyond any level of credibility.

Tim

[Guest guest]

I've learned a long time ago to ignore such absolute lunacy. I have never

met anyone w/ CFS/FM who comes close to interpreting illness as a payoff.

Obviously anyone saying so has no clue.

Jim (not " the " Jim)

[Guest guest]

It's attitudes like this we have to fight against. Why would anyone post a

" payoff " on here? I was sick since 1989, and all my sister and my ex treid to

do is tell me how lazy I am, and how I don't want to work, and how I need

psychological help. If it weren't for the IL2 I would still be disabled. In 3

years, I went from being helpless and totally dependent to having my own

business and being self sufficient, and helping my kids out. I had a

boyfriend living w/me, who wouldn't financially contribute. Now I make MUCH

more than him and kicked him out, and he was in his job for 20 years.

Statistically, most of us are actually HIGH achievers, who just got ill. No

one wants chronic pain, cognitive disorders, and to spend most of their life

in their bed. Thumbs down to you!!!

[Guest guest]

Since this keeps popping up, I want to add my two cents worth.

I can't believe how many times I have been hit with the attitude that people

think I somehow like being sick. I have NEVER wanted this illness, never

wanted how little people accommodate me, or fail to sympathize with me, or

misjudge my intentions, or assume I have a mental problem, or all the rest

of the totally irrational assumptions that are made that I end up suffering

the consequences of. I WANT to be well, with every fiber of my being!!!

There are a lot more enjoyable things to do if you're not sick, than be in

pain and be too tired to enjoy life. I'm in a FM group, and the same desire

to be well is in every person in that group. I have a niece with FM, who

lives by herself, who has to remain independent, and she fights to keep that

independence. She isn't trying to get attention by having FM. In fact, she

works very hard to keep people from knowing she has it. Actually, so do I,

but there's only just so much I can do. Why would anyone assume that living

with intolerable pain and fatigue is something desirable? Anyone with a

migraine headache that enjoys it? Do we automatically assume that people

with migraine headaches like the attention somehow? I can't believe that a

PWC would have the attitude that some PWC's enjoy being sick, unless they

really aren't very sick, or they themselves like being sick, (a rare person)

because it hasn't ever entered my mind once that I gain anything by being

sick. I LOSE, LOSE, LOSE! So does everyone else with these disorders. And I

resent being categorized as someone who has anything to gain by being sick.

lindaj@...

[Guest guest]

Well, my 2 cents on this subject s that it is very cruel & invalidating &

ignorant & totally uncalled for someone to make the remarks that any of us

enjoy or get a payoff somehow for our suffering.

We have all had o deal with this many time by ignorant thoughtless people &

finding it on this list is appalling & the last place it should be.

If anyone has these thoughts please keep them to yourself from now on &

avoid needlessly hurting other people.

[Guest guest]

For all the people who so vehemently oppose what Jim said and I

defended...

Part of me understands that you are sensitive to this because we have all

at some time (and most of us too many times) been accused of this (getting

something out of being sick). You have probably heard that being sick is

all in your head so many times that hearing it again just makes your blood

boil.

I am not a person that does not understand what this feels like. I have

been sick for many years. My own mother, every time I speak to her, says

that if I had a baby I wouldn't be sick anymore because I wouldn't have

time to be sick. Yeah, right. I don't let her bother me, she is ignorant

and I know it. But I also get irritated sometimes by the comments people

make. However, I have been on these lists for years and written probably

a thousand emails to help people when I could, and never once accused

someone of making themselves sick or getting a payback.

And the thing is, nobody ever said YOU are getting payback. If you know

you are not, fine. However (and you don't have to agree with me) I

personally believe that sometimes the mind does things we don't

understand. For example, I heard a person once describe how they hated

being fat, that there was nothing positive that can ever come from being

fat, that they loathed themself for being fat, that they hated themself

for being fat. But in fact they eventually realized that subconsciously

there was a payoff they got from being fat. In this case it was pissing

off their spouse who wanted them skinny, but it could have been something

else, like fear of a relationship. That is not to say that such a thing

exists for every person who is fat, but to deny that this can happen at

all is ridiculous. Haven't you ever known someone who is completely

miserable, but they don't change because they get something out of it?

Of course, in this case the person's behavior was causing the problem, and

we are not sick because of our behavior. But is it so farfetched as to

think some people get some payback with illnesses as well, and that that

may affect their health? In fact, I disagree that is is so rare as to be

unimportant.

I can state 100 reasons I hate being sick, but I can also state a few

positive payoffs about it. If you'd like to hear what they are I'll be

happy to tell you. That doesn't mean I think I am making myself sick, or

that I could do anything to change being sick. But I have thought about

it to make sure. I believe being aware of the few positive payoffs helps

me ensure they don't affect me in any negative way. If pressed, I

believe you all could come up with a least a couple positive payoffs. They

probably are piddly compared to the mountain of negative things, but they

are there. So it stands to reason that in some people they might be more

of a factor. As an example, I know a person who has been sick a long

time. It's a long story, but in a nutshell, I do believe he is sick, and

I do believe he doesn't like being sick. One thing about this person is

that he doesn't pursue new treatments and I believe there is a factor of

" what's the use " which we all go through sometimes, but I also know that

it's been a long time since he's worked and " been out in the world " and I

think he's a little afraid of that reality. Or another very personal

example is my sister, who was schizophrenic and who died three weeks ago

at 30 years old. She was in a state hospital and they overdrugged her.

She had a shitty life from the time she got sick at 15, and nobody would

ever say she liked being sick or made herself sick. But, she would do

things to get herself hospitalized, even though she always got worse when

she was hospitalized. Why? Because she got some type of payoff. She

felt safe in the hospital, even when they treated her badly, because there

was a routine, there were people around, they took care of her. This time

she had legal troubles and was afraid of going to jail, and while she was

hospitalized they continued to postpone her trial.

Maybe there was a better way to word this that would get this point

across. Probably not, because those of you that responded all took it as

an all or nothing thing when that was never suggested, so I believe your

responses were emotional and probably different wording wouldn't have

helped. But it's a shame because I found it useful to consider what the

positive payoffs were for me, and in doing so I made them disappear in

most cases.

Cindi

[Guest guest]

Here's a little analogy: Let's say you're attacked by a mugger. You manage

to get in a rather pitiful punch during the attack, but ultimately he

manages to stab you, seriously wounding you. Your pay-off is the one pitiful

punch that you managed to get in. It in no way counteracts the effects of

the rest of the suffering. Counting it as some sort of pay-back is

meaningless.

Here's another analogy: You're driving from city A to city B, but the drive

takes you through a safari area where wild lions are. Your car breaks down,

and lions show up. They manage to get into your car, and so you escape and

try to run, but they continue pursuing you. Another car happens to drive by,

and you yell, " Help! " The driver of the other car is a psychologist. He

rolls down his window and says, " Sure I'll help. Let's talk about what you

might gain from having these lions attack you. " Talking about benefits is

rather meaningless.

Here's another analogy: Through no fault of your own, you suddenly find

yourself $100,000 in debt. Somehow you manage to find $10 dollars. It's your

pay-back. The drop in the bucket benefit it has on your entire debt is

basically meaningless.

And even if there is some rather limited pay-back in this illness for

anyone, it's results are rather meaningless. It's like saying that because

we're ill we're supposed to have no joy, no love, no friends, nothing of

meaning while we have this illness. If there is some sort of pay-back, it in

no way counteracts the bulk of the effects of this illness on our lives, and

becomes meaningless. Even negative pay-backs become meaningless in this

illness.

When the medical community comes up with a cure, then discussing pay-backs

that outweigh seeking out the treatment may have meaning. But at this point

in time, the evidence that there are any pay-backs worth while is

meaningless.

But from my perspective, I've spent a lot of time in self-examination. Just

the fact that some people still consider it to be a somatization disorder

makes me examine myself to see if I am doing anything to encourage having

this disorder. And I'm not able to find anything. I've spent years studying

psychology, with the hopes that when my kids are grown and out of the home

I'd go back to school and get a degree in psychology, and studying it on my

own gives me a head start. And it's given me a background to help me examine

myself. I've also spent months going to a therapist trying to find any other

avenues that I haven't already explored, and none of the therapists that I

tried could come up with anything. To have someone who knows nothing about

me but feels they can generalize that all PWC's have something to gain from

being ill is totally irrational. To even suggest that there are some is

meaningless. It in no way impacts this disorder.

The only relevant issue that I could see would be someone who actually is

NOT sick, but pretends to be sick with this disorder to gain some sort of

benefit. And those kinds of people are very rare. I doubt any of them are on

this list, since it takes a lot of work to decipher the posts on this list,

and only if you have a vested interest in getting well would it be worth

sifting through them. Someone who wants to benefit wouldn't bother looking

for a cure from a source that holds as much potential as this list. There

are plenty of other less potential sources that they could haunt.

lindaj@...

Re: Re: Program Reverses FMS symptoms

> For all the people who so vehemently oppose what Jim said and I

> defended...

>

> Part of me understands that you are sensitive to this because we have all

> at some time (and most of us too many times) been accused of this (getting

> something out of being sick). You have probably heard that being sick is

> all in your head so many times that hearing it again just makes your blood

> boil.

>

> I am not a person that does not understand what this feels like. I have

> been sick for many years. My own mother, every time I speak to her, says

> that if I had a baby I wouldn't be sick anymore because I wouldn't have

> time to be sick. Yeah, right. I don't let her bother me, she is ignorant

> and I know it. But I also get irritated sometimes by the comments people

> make. However, I have been on these lists for years and written probably

> a thousand emails to help people when I could, and never once accused

> someone of making themselves sick or getting a payback.

>

> And the thing is, nobody ever said YOU are getting payback. If you know

> you are not, fine. However (and you don't have to agree with me) I

> personally believe that sometimes the mind does things we don't

> understand. For example, I heard a person once describe how they hated

> being fat, that there was nothing positive that can ever come from being

> fat, that they loathed themself for being fat, that they hated themself

> for being fat. But in fact they eventually realized that subconsciously

> there was a payoff they got from being fat. In this case it was pissing

> off their spouse who wanted them skinny, but it could have been something

> else, like fear of a relationship. That is not to say that such a thing

> exists for every person who is fat, but to deny that this can happen at

> all is ridiculous. Haven't you ever known someone who is completely

> miserable, but they don't change because they get something out of it?

>

> Of course, in this case the person's behavior was causing the problem, and

> we are not sick because of our behavior. But is it so farfetched as to

> think some people get some payback with illnesses as well, and that that

> may affect their health? In fact, I disagree that is is so rare as to be

> unimportant.

>

> I can state 100 reasons I hate being sick, but I can also state a few

> positive payoffs about it. If you'd like to hear what they are I'll be

> happy to tell you. That doesn't mean I think I am making myself sick, or

> that I could do anything to change being sick. But I have thought about

> it to make sure. I believe being aware of the few positive payoffs helps

> me ensure they don't affect me in any negative way. If pressed, I

> believe you all could come up with a least a couple positive payoffs. They

> probably are piddly compared to the mountain of negative things, but they

> are there. So it stands to reason that in some people they might be more

> of a factor. As an example, I know a person who has been sick a long

> time. It's a long story, but in a nutshell, I do believe he is sick, and

> I do believe he doesn't like being sick. One thing about this person is

> that he doesn't pursue new treatments and I believe there is a factor of

> " what's the use " which we all go through sometimes, but I also know that

> it's been a long time since he's worked and " been out in the world " and I

> think he's a little afraid of that reality. Or another very personal

> example is my sister, who was schizophrenic and who died three weeks ago

> at 30 years old. She was in a state hospital and they overdrugged her.

> She had a shitty life from the time she got sick at 15, and nobody would

> ever say she liked being sick or made herself sick. But, she would do

> things to get herself hospitalized, even though she always got worse when

> she was hospitalized. Why? Because she got some type of payoff. She

> felt safe in the hospital, even when they treated her badly, because there

> was a routine, there were people around, they took care of her. This time

> she had legal troubles and was afraid of going to jail, and while she was

> hospitalized they continued to postpone her trial.

>

> Maybe there was a better way to word this that would get this point

> across. Probably not, because those of you that responded all took it as

> an all or nothing thing when that was never suggested, so I believe your

> responses were emotional and probably different wording wouldn't have

> helped. But it's a shame because I found it useful to consider what the

> positive payoffs were for me, and in doing so I made them disappear in

> most cases.

>

> Cindi

>

>

>

>

[Guest guest]

Final reply, then I'm out.

I'm sorry for those of you that are offended by this or don't understand

what I'm saying.

I am glad that I said something useful for those of you that emailed me

privately and said so. Thanks for telling me. I don't waste hours a day

on these lists for anything except to learn things and to help others.

It is clear from the replies that some people are not really reading what

I'm saying. Maybe I'm not explaining well, or maybe they are reacting on

an emotional level. I never said or even implied that people get sick or

stay sick because of the positive payoffs, and I never said that this

illness is caused or maintained for unconscious or conscious needs. I

never said most of the things people are objecting to. And I completely

agree the positives are far outweighed by the negatives, and I said the

positives are piddly. They are not going to make you sicker, and getting

rid of them is not going to make you well. That completely misses the

point. It is more of a strategy for coping the best you can and maybe

making your life a little better.

Cindi