Re: False attributions, and the right to comment.

[Guest guest]

Hi, Matt.

I think you've misunderstood me, maybe because I worded what I said

in an ironic manner. I'm sorry if that was confusing.

My position is and has always been that I take what PWCs tell me at

face value and I believe that they are giving an accurate

description of their own experience. That includes you, and ,

and Colin and everyone else. What all of you tell me about your

cases forms a large part of the basis for my hypotheses about the

pathogenesis. If I didn't take all of you seriously, I would be

missing what I view as the " ground truth " about CFS, which

unfortunately cannot be gleaned very well from the body of published

research, for reasons I have discussed earlier in posts to Cort.

There may indeed be a small number of people with CFS who have

parted company with reality, or are hoping for a secondary gain, and

are thus unreliable in terms of their testimony, but I don't believe

I've encountered very many, if any, of those.

My wife even accuses me sometimes of being too gullible!

What I don't always accept is a person's view that his or her

particular experience is the same as that of others who also have

CFS. The reason I don't accept that is the very fact that I am also

listening to the others as well, and they are telling me different

things about their cases, which I also believe to be true. We have

a very heterogeneous population within the current case definition

of CFS.

I'm sorry if you and I have gotten off on the wrong foot with each

other. That certainly was not my intent. I value your opinions and

contributions, as I do those of others who challenge my thinking. I

hope that you will come to see me as an ally in the effort to

understand and cure CFS, though we may have some different opinions

about some aspects.

Rich

>

> Colin

>

>

> Stanley Schachter, the renowned social psychologist, might take

> issue with your attribution:

>

> " He proposed the phenomenon of misattribution, in which people

> explain their own feelings and behaviors as the result of some

> source other than the real one. In one experiment, he gave

> participants a pill that stimulated them, but told them it would

> make them itch. When the participants were placed in an emotional

> situation, they responded with strong emotions because they

believed

> the situation, not a drug, was the cause of the emotion. "

>

>

> http://www.columbia.edu/cu/pr/97/19150.html

>

>

> Organic disease can directly impact the function of the brain,

> with " psychological " consequences. IFN, for example,

> provokes " depression " in many of the patients treated with it.

But

> what attributions would these patients make if they did not know

> they were receiving the IFN? Would they conclude " I have a

> psychological state welling up in me that is clearly biological in

> origin. " ? What if their family, friends and physicians were

telling

> them that the disturbance was psychogenic?

>

> Perhaps you have been subjected to CFS's equivalent of Schachter's

> pill, and have drawn erroneous conclusions. You concede, after

all,

> that your judgment is unreliable.

>

> It doesn't much matter to me one way or the other.

>

> What does matter is the principle that Rich advances. The one your

> post lent weight to.

>

> He said,

>

> " It was tempting to suspect that the men were just being macho,

but

> what about taking the revolutionary point of view that (a) they

know

> what they're talking about, and ( they just might happen to be

> telling the truth? "

>

> He asserted the right to question the motives of PWCs (men may

> misrepresent their experiences out of machismo, he suspected).

Your

> post gives him the leverage to continue doing so (your " male ego "

> prevented you from acknowledging the nature of your own

experience).

>

> The idea that a PWC's words need not be taken at face value is one

> that Rich adheres to, that you adhere to, and that the physicians

> you say have abandoned you likely adhere to.

>

> Pearce agrees in his recent paper:

>

> " If adopted without adequate cause, the lifestyle of a chronic

> fatigue invalid is a grave misfortune for the patient, but also

for

> its reflection on current social attitudes prone to encourage such

> states. "

>

> " …the patients' behaviour may reflect a desire to attain the sick

> role for secondary gain… "

>

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> db=pubmed & cmd=Retrieve & dopt=AbstractPlus & list_uids=16914928

>

>

> I've speculated about your psychological make-up, only because

your

> post endorses such conjectures. Otherwise, I reject the principle

> that I or anyone else, has the right not to take the perceptions

of

> a given sick person at face value. I am not vouching for

> Schachter's theory; just using it to confront you on your own

terms.

>

> If Joe Blow says his CFS started with stress, I accept that. It's

> not for me to disagree. But Rich believes that the reports of

PWCs

> need not be trusted. You've aided that position.

>

> And you've licensed Pearce to comment as well.

>

> We need to abandon the CFS label in favor of three others. You

can

> join the " Attributionally-challenged fatigue syndrome " group and

> let the psychologists (like Rich and Pearce) debate over just how

> unreliable your testimony is. Others can join the " Post-stress

> fatigue syndrome " group and allow the psychologists to theorize

> about the role that stress plays in their disease, while insisting

> that the psychologists do not over-reach by questioning the self-

> reports of the PWCs in this group. I will join the " Non-

psychogenic

> fatigue " group that asserts the irrelevance of stress as a causal

> variable for its members, and that retains its sole right to say

> so. We will insist that the NIH and CDC fund research into the

> biological nature of our group's disease, and that withdraws

funding

> from any researcher who speculates about our psychological make-up.

>

> Matt

[Guest guest]

Hi Matt -

This is the most pre-meditated and thorough version of the " stop

complaining it is all in your head " I have heard to date.

Congratulations. What good does this accomplish?

If we can't share our real feelings and experiences on this list without

be picked apart as you have done, we are nowhere. It seems likely that

most PWC's started their journey by feeling something was wrong, and

being told be their doctor " your tests are all normal and you seem

perfectly healthy to me " over and over until they start taking control

of their own health by reading lists like this one. Since self

diagnosis is likely a commonality to many PWCs, discounting on principle

the perspective of the PWC, as you suggest, runs counter to the main

inclusive criteria of PWCs. Convenient if one wants to be the only one

who knows anything, and tell the rest of us that our experiences count

for nothing.

You haven't as you say " confronted me on my terms " but have thrown a

whole bunch of new mumbo jumbo, all leading me to seriously consider

ever posting to this list again, as full as it is of people (some

calling themselves " warriors " ) with axes to grind about their own view

of why everyone else out there needs to conform to their view of CFS,

and essentially confirming that it is a largely psychological

manifestation of a physiological issue in most cases. Most reading this

list are just sick people trying to learn how to get better by sharing

information. Shutting down our perspectives does nothing to help this.

You say there need to be 3 CFS groups, not one. How about a fourth group

that wants to reject and belittle whatever ideas groups one through

three some up with, and insist that people in the other groups who make

progress be denied their treatments as a way to prove that their

perceived progress was an illusion.

I for one do not consider Rich to be a psychologist, but a helpful,

insightful, knowledgeable person who has gone way out of his way to

provide us all with information which seems to be moving us in a badly

needed positive direction.

Colin

phagelod wrote:

>

> Colin

>

> Stanley Schachter, the renowned social psychologist, might take

> issue with your attribution:

>

> " He proposed the phenomenon of misattribution, in which people

> explain their own feelings and behaviors as the result of some

> source other than the real one. In one experiment, he gave

> participants a pill that stimulated them, but told them it would

> make them itch. When the participants were placed in an emotional

> situation, they responded with strong emotions because they believed

> the situation, not a drug, was the cause of the emotion. "

>

> http://www.columbia.edu/cu/pr/97/19150.html

> <http://www.columbia.edu/cu/pr/97/19150.html>

>

> Organic disease can directly impact the function of the brain,

> with " psychological " consequences. IFN, for example,

> provokes " depression " in many of the patients treated with it. But

> what attributions would these patients make if they did not know

> they were receiving the IFN? Would they conclude " I have a

> psychological state welling up in me that is clearly biological in

> origin. " ? What if their family, friends and physicians were telling

> them that the disturbance was psychogenic?

>

> Perhaps you have been subjected to CFS's equivalent of Schachter's

> pill, and have drawn erroneous conclusions. You concede, after all,

> that your judgment is unreliable.

>

> It doesn't much matter to me one way or the other.

>

> What does matter is the principle that Rich advances. The one your

> post lent weight to.

>

> He said,

>

> " It was tempting to suspect that the men were just being macho, but

> what about taking the revolutionary point of view that (a) they know

> what they're talking about, and ( they just might happen to be

> telling the truth? "

>

> He asserted the right to question the motives of PWCs (men may

> misrepresent their experiences out of machismo, he suspected). Your

> post gives him the leverage to continue doing so (your " male ego "

> prevented you from acknowledging the nature of your own experience).

>

> The idea that a PWC's words need not be taken at face value is one

> that Rich adheres to, that you adhere to, and that the physicians

> you say have abandoned you likely adhere to.

>

> Pearce agrees in his recent paper:

>

> " If adopted without adequate cause, the lifestyle of a chronic

> fatigue invalid is a grave misfortune for the patient, but also for

> its reflection on current social attitudes prone to encourage such

> states. "

>

> " ...the patients' behaviour may reflect a desire to attain the sick

> role for secondary gain... "

>

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?>

> db=pubmed & cmd=Retrieve & dopt=AbstractPlus & list_uids=16914928

>

> I've speculated about your psychological make-up, only because your

> post endorses such conjectures. Otherwise, I reject the principle

> that I or anyone else, has the right not to take the perceptions of

> a given sick person at face value. I am not vouching for

> Schachter's theory; just using it to confront you on your own terms.

>

> If Joe Blow says his CFS started with stress, I accept that. It's

> not for me to disagree. But Rich believes that the reports of PWCs

> need not be trusted. You've aided that position.

>

> And you've licensed Pearce to comment as well.

>

> We need to abandon the CFS label in favor of three others. You can

> join the " Attributionally-challenged fatigue syndrome " group and

> let the psychologists (like Rich and Pearce) debate over just how

> unreliable your testimony is. Others can join the " Post-stress

> fatigue syndrome " group and allow the psychologists to theorize

> about the role that stress plays in their disease, while insisting

> that the psychologists do not over-reach by questioning the self-

> reports of the PWCs in this group. I will join the " Non-psychogenic

> fatigue " group that asserts the irrelevance of stress as a causal

> variable for its members, and that retains its sole right to say

> so. We will insist that the NIH and CDC fund research into the

> biological nature of our group's disease, and that withdraws funding

> from any researcher who speculates about our psychological make-up.

>

> Matt

>

>

> > > >

> > > > Hi, all.

>

> It

> > > > was tempting to suspect that the men were just being macho, but

> > > what

> > > > about taking the revolutionary point of view that (a) they know

> > > what

> > > > they're talking about, and ( they just might happen to be

> > > telling

> > > > the truth? Could it be that things are different for men and

> women?

>

>

[Guest guest]

When I was first felled with this illness in 1977 I didn't even know another ill

person. I was only 25 years old and expected to have as wonderful second half

of life as the first, but suddenly and mysteriously I was decked. And I mean

decked. In bed for 2 years and slowly crawled back to a fraction of my former

energy. I'm no longer interested in defending myself or accounting for what

happened to me, but I can tell you I was full of the wonder of living and had

many friends that to this day will tell you I was happy and stressfree.

Yup...that's right. I've had it up to my eyeballs with people that want to

blame the patient, including the medical community. Just 2 years ago after a

horrendous crash where I lost 29 pounds in a few weeks and was in and out of the

hospital, my doctor told me I needed to eat more! Outrageous.

Being this sick will eventually make one * a little crazy* due to the

frustration of having no solution. And yes, I'm deeply grateful to Rich and

all the others like him that are trying to help us figure this out.

Colin Green <colin@...> wrote:

Hi Matt -

This is the most pre-meditated and thorough version of the " stop

complaining it is all in your head " I have heard to date.

Congratulations. What good does this accomplish?

If we can't share our real feelings and experiences on this list without

be picked apart as you have done, we are nowhere. It seems likely that

most PWC's started their journey by feeling something was wrong, and

being told be their doctor " your tests are all normal and you seem

perfectly healthy to me " over and over until they start taking control

of their own health by reading lists like this one. Since self

diagnosis is likely a commonality to many PWCs, discounting on principle

the perspective of the PWC, as you suggest, runs counter to the main

inclusive criteria of PWCs. Convenient if one wants to be the only one

who knows anything, and tell the rest of us that our experiences count

for nothing.

You haven't as you say " confronted me on my terms " but have thrown a

whole bunch of new mumbo jumbo, all leading me to seriously consider

ever posting to this list again, as full as it is of people (some

calling themselves " warriors " ) with axes to grind about their own view

of why everyone else out there needs to conform to their view of CFS,

and essentially confirming that it is a largely psychological

manifestation of a physiological issue in most cases. Most reading this

list are just sick people trying to learn how to get better by sharing

information. Shutting down our perspectives does nothing to help this.

You say there need to be 3 CFS groups, not one. How about a fourth group

that wants to reject and belittle whatever ideas groups one through

three some up with, and insist that people in the other groups who make

progress be denied their treatments as a way to prove that their

perceived progress was an illusion.

I for one do not consider Rich to be a psychologist, but a helpful,

insightful, knowledgeable person who has gone way out of his way to

provide us all with information which seems to be moving us in a badly

needed positive direction.

Colin

phagelod wrote:

>

> Colin

>

> Stanley Schachter, the renowned social psychologist, might take

> issue with your attribution:

>

> " He proposed the phenomenon of misattribution, in which people

> explain their own feelings and behaviors as the result of some

> source other than the real one. In one experiment, he gave

> participants a pill that stimulated them, but told them it would

> make them itch. When the participants were placed in an emotional

> situation, they responded with strong emotions because they believed

> the situation, not a drug, was the cause of the emotion. "

>

> http://www.columbia.edu/cu/pr/97/19150.html

> <http://www.columbia.edu/cu/pr/97/19150.html>

>

> Organic disease can directly impact the function of the brain,

> with " psychological " consequences. IFN, for example,

> provokes " depression " in many of the patients treated with it. But

> what attributions would these patients make if they did not know

> they were receiving the IFN? Would they conclude " I have a

> psychological state welling up in me that is clearly biological in

> origin. " ? What if their family, friends and physicians were telling

> them that the disturbance was psychogenic?

>

> Perhaps you have been subjected to CFS's equivalent of Schachter's

> pill, and have drawn erroneous conclusions. You concede, after all,

> that your judgment is unreliable.

>

> It doesn't much matter to me one way or the other.

>

> What does matter is the principle that Rich advances. The one your

> post lent weight to.

>

> He said,

>

> " It was tempting to suspect that the men were just being macho, but

> what about taking the revolutionary point of view that (a) they know

> what they're talking about, and ( they just might happen to be

> telling the truth? "

>

> He asserted the right to question the motives of PWCs (men may

> misrepresent their experiences out of machismo, he suspected). Your

> post gives him the leverage to continue doing so (your " male ego "

> prevented you from acknowledging the nature of your own experience).

>

> The idea that a PWC's words need not be taken at face value is one

> that Rich adheres to, that you adhere to, and that the physicians

> you say have abandoned you likely adhere to.

>

> Pearce agrees in his recent paper:

>

> " If adopted without adequate cause, the lifestyle of a chronic

> fatigue invalid is a grave misfortune for the patient, but also for

> its reflection on current social attitudes prone to encourage such

> states. "

>

> " ...the patients' behaviour may reflect a desire to attain the sick

> role for secondary gain... "

>

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

> <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?>

> db=pubmed & cmd=Retrieve & dopt=AbstractPlus & list_uids=16914928

>

> I've speculated about your psychological make-up, only because your

> post endorses such conjectures. Otherwise, I reject the principle

> that I or anyone else, has the right not to take the perceptions of

> a given sick person at face value. I am not vouching for

> Schachter's theory; just using it to confront you on your own terms.

>

> If Joe Blow says his CFS started with stress, I accept that. It's

> not for me to disagree. But Rich believes that the reports of PWCs

> need not be trusted. You've aided that position.

>

> And you've licensed Pearce to comment as well.

>

> We need to abandon the CFS label in favor of three others. You can

> join the " Attributionally-challenged fatigue syndrome " group and

> let the psychologists (like Rich and Pearce) debate over just how

> unreliable your testimony is. Others can join the " Post-stress

> fatigue syndrome " group and allow the psychologists to theorize

> about the role that stress plays in their disease, while insisting

> that the psychologists do not over-reach by questioning the self-

> reports of the PWCs in this group. I will join the " Non-psychogenic

> fatigue " group that asserts the irrelevance of stress as a causal

> variable for its members, and that retains its sole right to say

> so. We will insist that the NIH and CDC fund research into the

> biological nature of our group's disease, and that withdraws funding

> from any researcher who speculates about our psychological make-up.

>

> Matt

>

>

> > > >

> > > > Hi, all.

>

> It

> > > > was tempting to suspect that the men were just being macho, but

> > > what

> > > > about taking the revolutionary point of view that (a) they know

> > > what

> > > > they're talking about, and ( they just might happen to be

> > > telling

> > > > the truth? Could it be that things are different for men and

> women?

>

>

[Guest guest]

Rich

Thank you for clarifying your position. When you said, " It was

tempting to suspect that the men were just being macho… " I might

have appreciated the ironic intent were it not for Colin's follow-up

post ( " Back to gender stereotypes, I would say that it was my male

ego which prevented my from admitting that I was tired all the time

for so long. " ).

Matt

>

> Hi, Matt.

>

> I think you've misunderstood me, maybe because I worded what I

said

> in an ironic manner. I'm sorry if that was confusing.

>

[Guest guest]

Well, I'm glad at least Rich has enough commitment to finding the

truth to keep his mind open.

It's very important to a lot of people to force the point that

" stress had NOTHING to do with it. " Which is why, every time one of

us says, " My experience included one hell of a lot of stress, " we are

told to shut up NOW, in the rudest and most insulting possible terms.

Our experience is derided and denied. We are accused of " blaming the

victim " and allying ourselves with Very Bad People who are out to

destroy us all. In an irony that never ceases to astonish, our sanity

is occasionally called into question by people who claim to be on the

same side we are -- and have often known us long enough that we'd

sincerely hoped they'd know better.

Ultimately, the upshot of having our motives impugned and our

experience rejected is that people lose their ability to trust others

on this list, and their willingness to share -- and that's a loss to

us all.

But the fact remains, as Rich pointed out: Stress WAS part of the

story for quite a few of us. That is a fact. We can't change it. You

can't make us change it by insulting us, intimidating us, or bullying

us into silence. It happened. That's our truth. You help no one when

you try to wish it away. You can shush us up, but it doesn't change

history.

All it does is suppress accurate data that might be helpful to some

researcher (like Rich) who is trying to put our story together. Is

that what you want? Science based only on data you get to pick and

choose? Because if that's the case, the problem is not mine -- it

lies with people who need to go back and review the basics of the

scientific method.

Also, please note: Tthose of us who did go through period of stress

are NOT shouting down those who didn't. We're perfectly willing for

you to have your story, and expect you to allow us to have ours in

return. They don't have to be the same story. This is one-way

bullying, designed to force an unpopular set of facts to go away.

Allowing it to continue is allowing these people to shut out an

entire subset of PWCs, and make them unwelcome on this list.

This behavior is shameful and despicable in a community of people who

purport to be helping each other find real-world answers. It needs to

stop. NOW.

Sara

On Sep 7, 2006, at 11:14 AM, Edy Rayfield wrote:

> When I was first felled with this illness in 1977 I didn't even

> know another ill person. I was only 25 years old and expected to

> have as wonderful second half of life as the first, but suddenly

> and mysteriously I was decked. And I mean decked. In bed for 2

> years and slowly crawled back to a fraction of my former energy.

> I'm no longer interested in defending myself or accounting for what

> happened to me, but I can tell you I was full of the wonder of

> living and had many friends that to this day will tell you I was

> happy and stressfree. Yup...that's right. I've had it up to my

> eyeballs with people that want to blame the patient, including the

> medical community. Just 2 years ago after a horrendous crash where

> I lost 29 pounds in a few weeks and was in and out of the hospital,

> my doctor told me I needed to eat more! Outrageous.

>

> Being this sick will eventually make one * a little crazy* due to

> the frustration of having no solution. And yes, I'm deeply

> grateful to Rich and all the others like him that are trying to

> help us figure this out.

>

> Colin Green <colin@...> wrote:

> Hi Matt -

>

> This is the most pre-meditated and thorough version of the " stop

> complaining it is all in your head " I have heard to date.

> Congratulations. What good does this accomplish?

>

> If we can't share our real feelings and experiences on this list

> without

> be picked apart as you have done, we are nowhere. It seems likely that

> most PWC's started their journey by feeling something was wrong, and

> being told be their doctor " your tests are all normal and you seem

> perfectly healthy to me " over and over until they start taking control

> of their own health by reading lists like this one. Since self

> diagnosis is likely a commonality to many PWCs, discounting on

> principle

> the perspective of the PWC, as you suggest, runs counter to the main

> inclusive criteria of PWCs. Convenient if one wants to be the only one

> who knows anything, and tell the rest of us that our experiences count

> for nothing.

>

> You haven't as you say " confronted me on my terms " but have thrown a

> whole bunch of new mumbo jumbo, all leading me to seriously consider

> ever posting to this list again, as full as it is of people (some

> calling themselves " warriors " ) with axes to grind about their own view

> of why everyone else out there needs to conform to their view of CFS,

> and essentially confirming that it is a largely psychological

> manifestation of a physiological issue in most cases. Most reading

> this

> list are just sick people trying to learn how to get better by sharing

> information. Shutting down our perspectives does nothing to help this.

>

> You say there need to be 3 CFS groups, not one. How about a fourth

> group

> that wants to reject and belittle whatever ideas groups one through

> three some up with, and insist that people in the other groups who

> make

> progress be denied their treatments as a way to prove that their

> perceived progress was an illusion.

>

> I for one do not consider Rich to be a psychologist, but a helpful,

> insightful, knowledgeable person who has gone way out of his way to

> provide us all with information which seems to be moving us in a badly

> needed positive direction.

>

> Colin

>

> phagelod wrote:

>>

>> Colin

>>

>> Stanley Schachter, the renowned social psychologist, might take

>> issue with your attribution:

>>

>> " He proposed the phenomenon of misattribution, in which people

>> explain their own feelings and behaviors as the result of some

>> source other than the real one. In one experiment, he gave

>> participants a pill that stimulated them, but told them it would

>> make them itch. When the participants were placed in an emotional

>> situation, they responded with strong emotions because they believed

>> the situation, not a drug, was the cause of the emotion. "

>>

>> http://www.columbia.edu/cu/pr/97/19150.html

>> <http://www.columbia.edu/cu/pr/97/19150.html>

>>

>> Organic disease can directly impact the function of the brain,

>> with " psychological " consequences. IFN, for example,

>> provokes " depression " in many of the patients treated with it. But

>> what attributions would these patients make if they did not know

>> they were receiving the IFN? Would they conclude " I have a

>> psychological state welling up in me that is clearly biological in

>> origin. " ? What if their family, friends and physicians were telling

>> them that the disturbance was psychogenic?

>>

>> Perhaps you have been subjected to CFS's equivalent of Schachter's

>> pill, and have drawn erroneous conclusions. You concede, after all,

>> that your judgment is unreliable.

>>

>> It doesn't much matter to me one way or the other.

>>

>> What does matter is the principle that Rich advances. The one your

>> post lent weight to.

>>

>> He said,

>>

>> " It was tempting to suspect that the men were just being macho, but

>> what about taking the revolutionary point of view that (a) they know

>> what they're talking about, and ( they just might happen to be

>> telling the truth? "

>>

>> He asserted the right to question the motives of PWCs (men may

>> misrepresent their experiences out of machismo, he suspected). Your

>> post gives him the leverage to continue doing so (your " male ego "

>> prevented you from acknowledging the nature of your own experience).

>>

>> The idea that a PWC's words need not be taken at face value is one

>> that Rich adheres to, that you adhere to, and that the physicians

>> you say have abandoned you likely adhere to.

>>

>> Pearce agrees in his recent paper:

>>

>> " If adopted without adequate cause, the lifestyle of a chronic

>> fatigue invalid is a grave misfortune for the patient, but also for

>> its reflection on current social attitudes prone to encourage such

>> states. "

>>

>> " ...the patients' behaviour may reflect a desire to attain the sick

>> role for secondary gain... "

>>

>> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

>> <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?>

>> db=pubmed & cmd=Retrieve & dopt=AbstractPlus & list_uids=16914928

>>

>> I've speculated about your psychological make-up, only because your

>> post endorses such conjectures. Otherwise, I reject the principle

>> that I or anyone else, has the right not to take the perceptions of

>> a given sick person at face value. I am not vouching for

>> Schachter's theory; just using it to confront you on your own terms.

>>

>> If Joe Blow says his CFS started with stress, I accept that. It's

>> not for me to disagree. But Rich believes that the reports of PWCs

>> need not be trusted. You've aided that position.

>>

>> And you've licensed Pearce to comment as well.

>>

>> We need to abandon the CFS label in favor of three others. You can

>> join the " Attributionally-challenged fatigue syndrome " group and

>> let the psychologists (like Rich and Pearce) debate over just how

>> unreliable your testimony is. Others can join the " Post-stress

>> fatigue syndrome " group and allow the psychologists to theorize

>> about the role that stress plays in their disease, while insisting

>> that the psychologists do not over-reach by questioning the self-

>> reports of the PWCs in this group. I will join the " Non-psychogenic

>> fatigue " group that asserts the irrelevance of stress as a causal

>> variable for its members, and that retains its sole right to say

>> so. We will insist that the NIH and CDC fund research into the

>> biological nature of our group's disease, and that withdraws funding

>> from any researcher who speculates about our psychological make-up.

>>

>> Matt

>>

>>

>>>>>

>>>>> Hi, all.

>>

>> It

>>>>> was tempting to suspect that the men were just being macho, but

>>>> what

>>>>> about taking the revolutionary point of view that (a) they know

>>>> what

>>>>> they're talking about, and ( they just might happen to be

>>>> telling

>>>>> the truth? Could it be that things are different for men and

>> women?

>>

>>

>

>

[Guest guest]

Hi Sara,

Do you think that the inclination to downplay stress is maybe a backlash

toward the medical community that kept putting this disease into that catagory

exclusively for so long? I think it might be and it's unfortunate that in an

atmoshere such as this one we're still argueing about it. We talk about

triggers and stress could be one of many triggers that start the avalanche. In

my case it wasn't, but if you say it was in yours I believe you. I think the

underlying causes may have already been in place and that stress tipped some

over. Have you heard of or read a book called " Why Zebras Don't Get Ulcers " ?

It's very interesting about how humans handle stress much differently than the

animals and so progress into these disease states. Your brain maybe doesn't

know the difference between the stress of being trapped in traffic or the stress

of being bombarded with a pathagen. Just some thoughts.

Peace,

Edy

Mercuria <mercuria@...> wrote:

Well, I'm glad at least Rich has enough commitment to finding the

truth to keep his mind open.

It's very important to a lot of people to force the point that

" stress had NOTHING to do with it. " Which is why, every time one of

us says, " My experience included one hell of a lot of stress, " we are

told to shut up NOW, in the rudest and most insulting possible terms.

Our experience is derided and denied. We are accused of " blaming the

victim " and allying ourselves with Very Bad People who are out to

destroy us all. In an irony that never ceases to astonish, our sanity

is occasionally called into question by people who claim to be on the

same side we are -- and have often known us long enough that we'd

sincerely hoped they'd know better.

Ultimately, the upshot of having our motives impugned and our

experience rejected is that people lose their ability to trust others

on this list, and their willingness to share -- and that's a loss to

us all.

But the fact remains, as Rich pointed out: Stress WAS part of the

story for quite a few of us. That is a fact. We can't change it. You

can't make us change it by insulting us, intimidating us, or bullying

us into silence. It happened. That's our truth. You help no one when

you try to wish it away. You can shush us up, but it doesn't change

history.

All it does is suppress accurate data that might be helpful to some

researcher (like Rich) who is trying to put our story together. Is

that what you want? Science based only on data you get to pick and

choose? Because if that's the case, the problem is not mine -- it

lies with people who need to go back and review the basics of the

scientific method.

Also, please note: Tthose of us who did go through period of stress

are NOT shouting down those who didn't. We're perfectly willing for

you to have your story, and expect you to allow us to have ours in

return. They don't have to be the same story. This is one-way

bullying, designed to force an unpopular set of facts to go away.

Allowing it to continue is allowing these people to shut out an

entire subset of PWCs, and make them unwelcome on this list.

This behavior is shameful and despicable in a community of people who

purport to be helping each other find real-world answers. It needs to

stop. NOW.

Sara

On Sep 7, 2006, at 11:14 AM, Edy Rayfield wrote:

> When I was first felled with this illness in 1977 I didn't even

> know another ill person. I was only 25 years old and expected to

> have as wonderful second half of life as the first, but suddenly

> and mysteriously I was decked. And I mean decked. In bed for 2

> years and slowly crawled back to a fraction of my former energy.

> I'm no longer interested in defending myself or accounting for what

> happened to me, but I can tell you I was full of the wonder of

> living and had many friends that to this day will tell you I was

> happy and stressfree. Yup...that's right. I've had it up to my

> eyeballs with people that want to blame the patient, including the

> medical community. Just 2 years ago after a horrendous crash where

> I lost 29 pounds in a few weeks and was in and out of the hospital,

> my doctor told me I needed to eat more! Outrageous.

>

> Being this sick will eventually make one * a little crazy* due to

> the frustration of having no solution. And yes, I'm deeply

> grateful to Rich and all the others like him that are trying to

> help us figure this out.

>

> Colin Green <colin@...> wrote:

> Hi Matt -

>

> This is the most pre-meditated and thorough version of the " stop

> complaining it is all in your head " I have heard to date.

> Congratulations. What good does this accomplish?

>

> If we can't share our real feelings and experiences on this list

> without

> be picked apart as you have done, we are nowhere. It seems likely that

> most PWC's started their journey by feeling something was wrong, and

> being told be their doctor " your tests are all normal and you seem

> perfectly healthy to me " over and over until they start taking control

> of their own health by reading lists like this one. Since self

> diagnosis is likely a commonality to many PWCs, discounting on

> principle

> the perspective of the PWC, as you suggest, runs counter to the main

> inclusive criteria of PWCs. Convenient if one wants to be the only one

> who knows anything, and tell the rest of us that our experiences count

> for nothing.

>

> You haven't as you say " confronted me on my terms " but have thrown a

> whole bunch of new mumbo jumbo, all leading me to seriously consider

> ever posting to this list again, as full as it is of people (some

> calling themselves " warriors " ) with axes to grind about their own view

> of why everyone else out there needs to conform to their view of CFS,

> and essentially confirming that it is a largely psychological

> manifestation of a physiological issue in most cases. Most reading

> this

> list are just sick people trying to learn how to get better by sharing

> information. Shutting down our perspectives does nothing to help this.

>

> You say there need to be 3 CFS groups, not one. How about a fourth

> group

> that wants to reject and belittle whatever ideas groups one through

> three some up with, and insist that people in the other groups who

> make

> progress be denied their treatments as a way to prove that their

> perceived progress was an illusion.

>

> I for one do not consider Rich to be a psychologist, but a helpful,

> insightful, knowledgeable person who has gone way out of his way to

> provide us all with information which seems to be moving us in a badly

> needed positive direction.

>

> Colin

>

> phagelod wrote:

>>

>> Colin

>>

>> Stanley Schachter, the renowned social psychologist, might take

>> issue with your attribution:

>>

>> " He proposed the phenomenon of misattribution, in which people

>> explain their own feelings and behaviors as the result of some

>> source other than the real one. In one experiment, he gave

>> participants a pill that stimulated them, but told them it would

>> make them itch. When the participants were placed in an emotional

>> situation, they responded with strong emotions because they believed

>> the situation, not a drug, was the cause of the emotion. "

>>

>> http://www.columbia.edu/cu/pr/97/19150.html

>> <http://www.columbia.edu/cu/pr/97/19150.html>

>>

>> Organic disease can directly impact the function of the brain,

>> with " psychological " consequences. IFN, for example,

>> provokes " depression " in many of the patients treated with it. But

>> what attributions would these patients make if they did not know

>> they were receiving the IFN? Would they conclude " I have a

>> psychological state welling up in me that is clearly biological in

>> origin. " ? What if their family, friends and physicians were telling

>> them that the disturbance was psychogenic?

>>

>> Perhaps you have been subjected to CFS's equivalent of Schachter's

>> pill, and have drawn erroneous conclusions. You concede, after all,

>> that your judgment is unreliable.

>>

>> It doesn't much matter to me one way or the other.

>>

>> What does matter is the principle that Rich advances. The one your

>> post lent weight to.

>>

>> He said,

>>

>> " It was tempting to suspect that the men were just being macho, but

>> what about taking the revolutionary point of view that (a) they know

>> what they're talking about, and ( they just might happen to be

>> telling the truth? "

>>

>> He asserted the right to question the motives of PWCs (men may

>> misrepresent their experiences out of machismo, he suspected). Your

>> post gives him the leverage to continue doing so (your " male ego "

>> prevented you from acknowledging the nature of your own experience).

>>

>> The idea that a PWC's words need not be taken at face value is one

>> that Rich adheres to, that you adhere to, and that the physicians

>> you say have abandoned you likely adhere to.

>>

>> Pearce agrees in his recent paper:

>>

>> " If adopted without adequate cause, the lifestyle of a chronic

>> fatigue invalid is a grave misfortune for the patient, but also for

>> its reflection on current social attitudes prone to encourage such

>> states. "

>>

>> " ...the patients' behaviour may reflect a desire to attain the sick

>> role for secondary gain... "

>>

>> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

>> <http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?>

>> db=pubmed & cmd=Retrieve & dopt=AbstractPlus & list_uids=16914928

>>

>> I've speculated about your psychological make-up, only because your

>> post endorses such conjectures. Otherwise, I reject the principle

>> that I or anyone else, has the right not to take the perceptions of

>> a given sick person at face value. I am not vouching for

>> Schachter's theory; just using it to confront you on your own terms.

>>

>> If Joe Blow says his CFS started with stress, I accept that. It's

>> not for me to disagree. But Rich believes that the reports of PWCs

>> need not be trusted. You've aided that position.

>>

>> And you've licensed Pearce to comment as well.

>>

>> We need to abandon the CFS label in favor of three others. You can

>> join the " Attributionally-challenged fatigue syndrome " group and

>> let the psychologists (like Rich and Pearce) debate over just how

>> unreliable your testimony is. Others can join the " Post-stress

>> fatigue syndrome " group and allow the psychologists to theorize

>> about the role that stress plays in their disease, while insisting

>> that the psychologists do not over-reach by questioning the self-

>> reports of the PWCs in this group. I will join the " Non-psychogenic

>> fatigue " group that asserts the irrelevance of stress as a causal

>> variable for its members, and that retains its sole right to say

>> so. We will insist that the NIH and CDC fund research into the

>> biological nature of our group's disease, and that withdraws funding

>> from any researcher who speculates about our psychological make-up.

>>

>> Matt

>>

>>

>>>>>

>>>>> Hi, all.

>>

>> It

>>>>> was tempting to suspect that the men were just being macho, but

>>>> what

>>>>> about taking the revolutionary point of view that (a) they know

>>>> what

>>>>> they're talking about, and ( they just might happen to be

>>>> telling

>>>>> the truth? Could it be that things are different for men and

>> women?

>>

>>

>

>

[Guest guest]

The answer to Matt's letter is contained in it -

> " He proposed the phenomenon of misattribution, in which people

> explain their own feelings and behaviors as the result of some

> source other than the real one. In one experiment, he gave

> participants a pill that stimulated them, but told them it would

> make them itch. When the participants were placed in an emotional

> situation, they responded with strong emotions because they believed

> the situation, not a drug, was the cause of the emotion. "

Stanley Schachter, the renowned social psychologist

It is clear Matt is suffering under strong emotions and this has

clouded his judgement.

It is obvious to anyone who has been around CFS that it is a complex

disease - even though there are similaraties in the symptom picture

still every one experiences this disease (and the several related

diseases) in different ways. Given the most popular theories about the

cause of these diseases - this is easy to understand. First the

disease manifests in stages and phases - with each phase having it's

own symptom picture. Example if we accept the pathogen theory then it

will be possible for any organ or gland to be effected and the

symptoms will be different according to what tissues are infected and

what level of damage that has been done.

This disease can hit anyone and each will have their own experiences

and story to tell. To take elitist attitudes about our particular

experiences is simply rediculous.

[Guest guest]

>

> Hi Sara,

>

> Do you think that the inclination to downplay stress is maybe a

backlash toward the medical community that kept putting this disease

into that catagory exclusively for so long?

*I agree with Edy here - with a further comment. Part of the problem

comes from a misinterpertation of the word 'stress'. Many people think

that stress is some kind of 'psychological' phenomenon and therefore

of not much importance - just change your mind. Stress is a very

clearly defined physiological phenomenon - and the psychological

artifacts - are just that - symptoms - along with the many other

symptoms. If one is interested in the description of the stress

response (a physiological response)they should read the work of the

great Endocrinologist - Hans Selye - who was the first person to

describe this phenomenon.

Stress is a way of responding to challenge - if the stressors

(endogenous and exogenous)are more than the organism can cope with

then the organism will start suffering deficit and this becomes stress

disorder - a disease. Stress response occurs in all complex living

organisms not just humans and any living being can be overwhaelmed by

the stressors of life if their resources for coping are inadequate to

the challenge.

[Guest guest]

Colin Green <colin@...> wrote:

> (some calling themselves " warriors " ) with axes to grind about

their own view of why everyone else out there needs to conform to

their view of CFS, and essentially confirming that it is a largely

psychological manifestation of a physiological issue in most cases. <

Yes, I do have a rather large axe to grind.

You have to look at our response within the context of twenty

years of denial by those who claim the illness is " All In Your Head " .

We've recently had a " techno-update " of IAYH to " Genetically

Induced by What's In Your Head " and some people are even buying into

it even although it's really just another way of saying the same

thing.

It's just slightly altered view that CFS is " mass hysteria " and

that to stem the tide of sufferers, more behavioral intervention is

needed to ward off genetic consequences of bad thoughts lest they

result in physiological illness.

Which is a silly thing to propose to someone who wasn't thinking

bad thoughts and was involved in an epidemic.

You must have misinterpreted my post about not wanting to be a

prototype for CFS but having Dr Cheney pursuade me to do it.

It wasn't my idea for people to conform to my case of illness, it

was his. So I guess he wanted others to conform to my views.

But the bottom line is, now that it is done, it cannot be changed.

My illness was called " CFS " and anyone who uses that term cannot

help but compare themselves to the source, deny it though they try.

Even if they attempt to say " CFS has moved on since then " or " There

are many subsets " , it's still an admission that whatever " CFS " they

are talking about is distorted away from the original is still an

alteration from an original basis.

Which reveals that they cannot make their " CFS " conform to the

original - so they appropriate the name and place it upon a

different illness instead of making their concepts fit the facts.

And when I describe CFS, I am just stating facts, as Dr Cheney

asked me to do.

Whether your complaints meet the criteria for CFS or not, if you

want your tiredness taken seriously, I doubt that insisting that it

is stress induced will do it. If someone said that to you, wouldn't

you just say " So reduce stress " ?

-

[Guest guest]

" Vinod Kumar " wrote:

Stress is a very clearly defined physiological phenomenon - and the

psychological artifacts - are just that - symptoms - along with the

many other symptoms. If one is interested in the description of the

stress response (a physiological response)they should read the work

of the great Endocrinologist - Hans Selye - who was the first person

to describe this phenomenon.

>

> Stress is a way of responding to challenge - if the stressors

(endogenous and exogenous)are more than the organism can cope with

then the organism will start suffering deficit and this becomes

stress disorder - a disease. Stress response occurs in all complex

living organisms not just humans and any living being can be

overwhaelmed by the stressors of life if their resources for coping

are inadequate to the challenge.

>

If stress is a clearly defined " physiological " phenomenon, why do

the psychologists keep applying behavioral approaches?

Are you sure this is what they are thinking when they say " stress " ?

Hmm, so the " stress " of combat could either refer to the

emotional stress of battle or the biological stress of being wounded.

A soldier can be said to suffer from " Post Traumatic Stress

Disorder " even if the stress involved was of being shot.

If the wound would have been nonfatal but for the bleeding, I

suppose that you could say that it wasn't the bullet that killed

him, no, it was the stress on the organs from loss of blood.

They could bury him at Arlington with the tombstone:

" Stressed In Action "

Some extremely sick people are so close to death that the merest

excitement could be too much. You might surprise them with a family

reunion or a birthday cake, and what might otherwise have been

called " Happiness " and " joy " was the " stress " that pushed them over

the edge.

Why, I used to know a guy whose grandfather died during sex. The

stress was too much. So I guess sex is " stress " too.

HIV AIDS is " biological stress " , and I thought it was an infection!

Call me old-fashioned for thinking that stress meant what it used

to mean, but is there anything left that ISN " T " stress " ?

-

[Guest guest]

Time for a new greoup CFSFM_What_the_Heck_is_Stress_Anyhow.

On 9/7/06, erikmoldwarrior <erikmoldwarrior@...> wrote:

> Call me old-fashioned for thinking that stress meant what it used

> to mean, but is there anything left that ISN " T " stress " ?

>

> -

[Guest guest]

>

> If stress is a clearly defined " physiological " phenomenon, why do

> the psychologists keep applying behavioral approaches?

> Are you sure this is what they are thinking when they say " stress " ?

The mind and the body are not seperate. When we are under stress it is

the whole body which is involved - the mind and the body. The mind is

not some kind of seperate phenomenon - it has no existance outside of

the body.

I would not like to speak for psychologists - I am sure there are many

concepts about what psychology referes to. But the very concept

'behavioral approach' refers to the whole organism. Attempts to

seperate the mind from the physiology of the body - including the

endocrine glands and functions - brain chemistry - Autonomic and

Central Nervous system - etc. etc. are useless and naive. The many

reactive states we go under are physical responses of the nervous

system, the endocrine glands and the brain - these reactions occur

regardless of what any individual might think about it.

You mention combat - success in ultimately stressful situations

depends much less on one's 'mind' and much more on the status of one's

adrenal glands and brain chemistry. Many here are offended by the idea

that their disease is all in their head. The implication that CFS is a

disease that one could recover from if they just had the right mind

set is profoundly insulting. How many thousands of patients have spent

untold amounts of money on 'behavioral approaches' with no benefit at

all. I think most psychologists would agree that they have no power

over such disease processes as CFS. There are no exceptable models for

how the 'mind' might cause this complete breakdown of normal physical

functioning.

People who suffer debilitating chronic disease naturally have great

psychological challenges - it is not easy to deal with the fact that

life is falling apart and all goals seem unreachable - some people

barely have the energy to get through the day although confined to

their house - so the loss of normalcy naturally is an adjustment that

must be made - but it is not easy and at times we might feel

overwhelmed and have psychological breakdowns - but these breakdowns

are not causes they are effects.

In general I find a great deal of psychological strength in those who

suffer these diseases. It takes strength at times just to keep going

when nothing is as we would like it and we can not achieve even simple

things. Many suffer great grief as a result of the tragedy of their

life - CFS is a disease of loss - we keep losing more and more - from

jobs - to relationships - to family love - social acceptance - etc. To

bring up psychology and behavioral approachs is cruel and lacks basic

understanding of what CFS can do to a perfectly normal person. Many

people on this list are semi-invilids with severly limited lives -

action wise - but even within this depressing picture they have

manageed to make a life for themselves that is admirable and often

even noble.

Interesting anecdote - one friend is a writer in the motion picture

industry - he has made a fortune in this business and in several other

businesses (including a very sucessful real estate business)- all of

this he does from his home since he is not able to spend more than an

hour at a time on his feet. He has developed his own technique for

getting work done in small chunks - he works and rests - works and

rests. So many people live very creative lives from their homes. They

are creative and wonderful human beings - they simply are limited in

their energy and stamina and have had to learn to thrive within the

context of their disease. There are many such people on this list.

Some people suffer energy loss as well as mind fog and unrelenting

pain (as we know the list of horrors that one might suffer are

endless)- at times they barely know who they are or what is happening

to them - yet they keep on trucking - none of this implys

'psychological' issues.

[Guest guest]

Actually, HIV manifests very differently in different folks. Some are

long term survivors who never progressed to AIDS or even any clinical

symptoms and others progressed quickly.

>

> HIV AIDS is " biological stress " , and I thought it was an infection!

>

> Call me old-fashioned for thinking that stress meant what it used

> to mean, but is there anything left that ISN " T " stress " ?

>

> -

>

[Guest guest]

Rich is what I would term a class act.

Thank you for being on our list and helping.

Helen

>

> Hi, Matt.

>

> I think you've misunderstood me, maybe because I worded what I said

> in an ironic manner. I'm sorry if that was confusing.

>

> My position is and has always been that I take what PWCs tell me at

> face value and I believe that they are giving an accurate

> description of their own experience. That includes you, and ,

> and Colin and everyone else. What all of you tell me about your

> cases forms a large part of the basis for my hypotheses about the

> pathogenesis. If I didn't take all of you seriously, I would be

> missing what I view as the " ground truth " about CFS, which

> unfortunately cannot be gleaned very well from the body of

published

> research, for reasons I have discussed earlier in posts to Cort.

>

> There may indeed be a small number of people with CFS who have

> parted company with reality, or are hoping for a secondary gain,

and

> are thus unreliable in terms of their testimony, but I don't

believe

> I've encountered very many, if any, of those.

>

> My wife even accuses me sometimes of being too gullible!

>

> What I don't always accept is a person's view that his or her

> particular experience is the same as that of others who also have

> CFS. The reason I don't accept that is the very fact that I am

also

> listening to the others as well, and they are telling me different

> things about their cases, which I also believe to be true. We have

> a very heterogeneous population within the current case definition

> of CFS.

>

> I'm sorry if you and I have gotten off on the wrong foot with each

> other. That certainly was not my intent. I value your opinions

and

> contributions, as I do those of others who challenge my thinking.

I

> hope that you will come to see me as an ally in the effort to

> understand and cure CFS, though we may have some different opinions

> about some aspects.

>

> Rich

>

> >

[Guest guest]

That was very nicely said.

Vinod Kumar <vinod3x3@...> wrote:

>

> If stress is a clearly defined " physiological " phenomenon, why do

> the psychologists keep applying behavioral approaches?

> Are you sure this is what they are thinking when they say " stress " ?

The mind and the body are not seperate. When we are under stress it is

the whole body which is involved - the mind and the body. The mind is

not some kind of seperate phenomenon - it has no existance outside of

the body.

I would not like to speak for psychologists - I am sure there are many

concepts about what psychology referes to. But the very concept

'behavioral approach' refers to the whole organism. Attempts to

seperate the mind from the physiology of the body - including the

endocrine glands and functions - brain chemistry - Autonomic and

Central Nervous system - etc. etc. are useless and naive. The many

reactive states we go under are physical responses of the nervous

system, the endocrine glands and the brain - these reactions occur

regardless of what any individual might think about it.

You mention combat - success in ultimately stressful situations

depends much less on one's 'mind' and much more on the status of one's

adrenal glands and brain chemistry. Many here are offended by the idea

that their disease is all in their head. The implication that CFS is a

disease that one could recover from if they just had the right mind

set is profoundly insulting. How many thousands of patients have spent

untold amounts of money on 'behavioral approaches' with no benefit at

all. I think most psychologists would agree that they have no power

over such disease processes as CFS. There are no exceptable models for

how the 'mind' might cause this complete breakdown of normal physical

functioning.

People who suffer debilitating chronic disease naturally have great

psychological challenges - it is not easy to deal with the fact that

life is falling apart and all goals seem unreachable - some people

barely have the energy to get through the day although confined to

their house - so the loss of normalcy naturally is an adjustment that

must be made - but it is not easy and at times we might feel

overwhelmed and have psychological breakdowns - but these breakdowns

are not causes they are effects.

In general I find a great deal of psychological strength in those who

suffer these diseases. It takes strength at times just to keep going

when nothing is as we would like it and we can not achieve even simple

things. Many suffer great grief as a result of the tragedy of their

life - CFS is a disease of loss - we keep losing more and more - from

jobs - to relationships - to family love - social acceptance - etc. To

bring up psychology and behavioral approachs is cruel and lacks basic

understanding of what CFS can do to a perfectly normal person. Many

people on this list are semi-invilids with severly limited lives -

action wise - but even within this depressing picture they have

manageed to make a life for themselves that is admirable and often

even noble.

Interesting anecdote - one friend is a writer in the motion picture

industry - he has made a fortune in this business and in several other

businesses (including a very sucessful real estate business)- all of

this he does from his home since he is not able to spend more than an

hour at a time on his feet. He has developed his own technique for

getting work done in small chunks - he works and rests - works and

rests. So many people live very creative lives from their homes. They

are creative and wonderful human beings - they simply are limited in

their energy and stamina and have had to learn to thrive within the

context of their disease. There are many such people on this list.

Some people suffer energy loss as well as mind fog and unrelenting

pain (as we know the list of horrors that one might suffer are

endless)- at times they barely know who they are or what is happening

to them - yet they keep on trucking - none of this implys

'psychological' issues.

[Guest guest]

On Sep 7, 2006, at 12:11 PM, Edy Rayfield wrote:

> Hi Sara,

>

> Do you think that the inclination to downplay stress is maybe a

> backlash toward the medical community that kept putting this

> disease into that catagory exclusively for so long?

Absolutely. But the doctors who are willfully ignoring the facts are

the enemy here. The people who are simply describing the facts of

their disease process are not.

If we stop talking about very real symptoms simply because other

people might twist them and use them against us, we are in effect

allowing our enemies to define our disease for us. It's reactive --

and any time you're drawn into being reactive, your enemy is

controlling you. Why on earth would we consent to that?

> I think it might be and it's unfortunate that in an atmoshere such

> as this one we're still argueing about it. We talk about triggers

> and stress could be one of many triggers that start the avalanche.

Exactly. As I've said before: physiological stress has been well-

known for centuries to increase people's vulnerability to every kind

of pathogen. If it turns out that's not true of CFS, it will be a

medical first.

It's not to say that perfectly healthy individuals who are not under

physiological stress don't also get seriously sick. Of course they do

-- there are a lot of components to any disease, and more than the

usual number to this one. We have no shortage of such people here,

and we hear from them often.

But statistically, healthy people's odds of getting seriously sick

are lower, and they bounce back faster, because they simply have more

physical resources to cope. It's a game of percentages. Those those

who aren't carrying huge allostatic stress loads tend to be winners a

bit more often, and those who are tend to lose more often. It's just

another factor in a multifactoral disease.

I don't know why this idea is so controversial, but it seems to be.

> In my case it wasn't, but if you say it was in yours I believe

> you. I think the underlying causes may have already been in place

> and that stress tipped some over. Have you heard of or read a book

> called " Why Zebras Don't Get Ulcers " ? It's very interesting about

> how humans handle stress much differently than the animals and so

> progress into these disease states. Your brain maybe doesn't know

> the difference between the stress of being trapped in traffic or

> the stress of being bombarded with a pathagen.

It's more like: the stress of being trapped in traffic (or eating a

poor diet, or not getting enough sleep) creates well-documented

changes in immune function that make it much harder to fight off the

daily pathogen bombardment. If the immune system is depressed long

enough, one or another pathogen is going to get through.

Animals absolutely do experience the same kinds of physical stresses

when they are subject to overcrowding, poor diet, bad sleep, constant

attack, and so on. And their immune systems also crash and burn if

you keep the pressure on them long enough.

Sara

[Guest guest]

Hi Sara,

I agree. Majid Ali wrote a book about the canaries. It's just my own

interpretation, but I think I'm in that catagory and maybe a lot of those on

this list are as well. If we really want to go to the core maybe exploring the

Yasko thing, the genetic thing and all the other assaults on us. I've been a

gardener for a long time and there's always a few plants that must be somehow

weaker and they inveritably attract the bugs and molds. And there's some that

don't even come under the radar of them. I know where I am on that curve. I'm

very impressed at the amount of energy that is being given to get this. What a

puzzle.

Mercuria <mercuria@...> wrote:

On Sep 7, 2006, at 12:11 PM, Edy Rayfield wrote:

> Hi Sara,

>

> Do you think that the inclination to downplay stress is maybe a

> backlash toward the medical community that kept putting this

> disease into that catagory exclusively for so long?

Absolutely. But the doctors who are willfully ignoring the facts are

the enemy here. The people who are simply describing the facts of

their disease process are not.

If we stop talking about very real symptoms simply because other

people might twist them and use them against us, we are in effect

allowing our enemies to define our disease for us. It's reactive --

and any time you're drawn into being reactive, your enemy is

controlling you. Why on earth would we consent to that?

> I think it might be and it's unfortunate that in an atmoshere such

> as this one we're still argueing about it. We talk about triggers

> and stress could be one of many triggers that start the avalanche.

Exactly. As I've said before: physiological stress has been well-

known for centuries to increase people's vulnerability to every kind

of pathogen. If it turns out that's not true of CFS, it will be a

medical first.

It's not to say that perfectly healthy individuals who are not under

physiological stress don't also get seriously sick. Of course they do

-- there are a lot of components to any disease, and more than the

usual number to this one. We have no shortage of such people here,

and we hear from them often.

But statistically, healthy people's odds of getting seriously sick

are lower, and they bounce back faster, because they simply have more

physical resources to cope. It's a game of percentages. Those those

who aren't carrying huge allostatic stress loads tend to be winners a

bit more often, and those who are tend to lose more often. It's just

another factor in a multifactoral disease.

I don't know why this idea is so controversial, but it seems to be.

> In my case it wasn't, but if you say it was in yours I believe

> you. I think the underlying causes may have already been in place

> and that stress tipped some over. Have you heard of or read a book

> called " Why Zebras Don't Get Ulcers " ? It's very interesting about

> how humans handle stress much differently than the animals and so

> progress into these disease states. Your brain maybe doesn't know

> the difference between the stress of being trapped in traffic or

> the stress of being bombarded with a pathagen.

It's more like: the stress of being trapped in traffic (or eating a

poor diet, or not getting enough sleep) creates well-documented

changes in immune function that make it much harder to fight off the

daily pathogen bombardment. If the immune system is depressed long

enough, one or another pathogen is going to get through.

Animals absolutely do experience the same kinds of physical stresses

when they are subject to overcrowding, poor diet, bad sleep, constant

attack, and so on. And their immune systems also crash and burn if

you keep the pressure on them long enough.

Sara

[Guest guest]

" Vinod Kumar " wrote:

> I would not like to speak for psychologists - I am sure there are

many concepts about what psychology referes to. But the very concept

'behavioral approach' refers to the whole organism. Attempts to

seperate the mind from the physiology of the body - including the

endocrine glands and functions - brain chemistry - Autonomic and

Central Nervous system - etc. etc. are useless and naive. The many

reactive states we go under are physical responses of the nervous

system, the endocrine glands and the brain - these reactions occur

regardless of what any individual might think about it.

>

Infections occur regardless of what any individual might think

about it.

Many infections don't even seem to care if the individual is

conscious or not.

Using the " power of the mind " to control infections has been

historically unproductive. However, psychologizers adhere to the

concept that if you fail to control your illness, it is due to your

own weakness of mind and lack of will power.

And when you point out that it is not uncommon for physiological

illnesses and infections to be unresponsive to mental control, the

usual response is " You cannot separate the mind and the body " .

Actually, you can.

Bacteria, viruses and parasites can be cultured in a chunk of meat

and demonstrate cellular pathogenesis.

Of course, the next response is " You are only ill if you allow

yourself to BELIEVE that you are ill " .

Which is quite a separate issue to doing what is necessary to

eliminate the infection.

-

[Guest guest]

Mercuria wrote:

> But the fact remains, as Rich pointed out: Stress WAS part of the

> story for quite a few of us. That is a fact. We can't change it.

You can't make us change it by insulting us, intimidating us, or

bullying us into silence. It happened. That's our truth. You help

no one when you try to wish it away. You can shush us up, but it

doesn't change history.

>

> All it does is suppress accurate data that might be helpful to

some researcher (like Rich) who is trying to put our story together.

Is that what you want? Science based only on data you get to pick

and choose? Because if that's the case, the problem is not mine --

it lies with people who need to go back and review the basics of the

scientific method.

>

Stress was part of the " ulcer " story too.

Quite a few people swore that stress caused their ulcers and wrote

untold numbers of books about reducing stress to get rid of their

ulcers.

Now that Barry Marshall and Robin Warren have the Nobel prize, I

guess all those stress theorizers are going to have to go back and

review the basics of the scientific method.

-

[Guest guest]

On Sep 7, 2006, at 7:04 PM, erikmoldwarrior wrote:

> Stress was part of the " ulcer " story too.

> Quite a few people swore that stress caused their ulcers and wrote

> untold numbers of books about reducing stress to get rid of their

> ulcers.

> Now that Barry Marshall and Robin Warren have the Nobel prize, I

> guess all those stress theorizers are going to have to go back and

> review the basics of the scientific method.

Heliobacter pylori is a ubiquitous bacterium. We encounter it all the

time. So why doesn't everybody have an ulcer?

Part of the answer is that people who are physically weakened -- say,

by physiological stressors like overwork, poor diet, lack of sleep,

weeks and months in high-adrenaline, high-cortisol situations, or

prior illness -- are much more susceptible to forming colonies of it

in their stomachs. Which is why doctors seemed to notice that a lot

of people with ulcers were also people under stress.

Yes, it was a stupid logical error to assume that correlation implied

causality. (It usually is.) But it was precisely because the

correlation was so strong that it took an entire generation for the

h. pylori discovery to gain credence. The doctors knew that much (not

all, but a majority) of what they saw clinically appeared to fit the

stress model; and, statistically, they weren't wholly wrong. The

problem, of course, was that merely alleviating the stress did

nothing to kill the bacteria once it was established.

So, hey, thanks for proving my point.

It's NOT either-or, no matter how much you might insist otherwise.

Sara

[Guest guest]

Hello,

I think I would agree with on this issue regarding the fact that

Myalgic Encephalomyelitis/CFS epidemics break out among a group of people

because of infection or toxic chemical exposure. Some of those people may

have a little more psychological stress that others; however, this stress idea

did not deserve to become front and center issue with the newly coined disease

name,

Chronic Fatigue Syndrome.

For example, here in the Sacramento area, there were three outbreaks of

Myalgic Encephalomyelitis (I hate to use the coined term--CFS---of the CDC):

1. Mercy San Hospital---200 hospital staff & spreading to children of

hospital

staff

and from there to the children's teachers

2. Rosedale Hospital in Roseville, California--

11 or more cases of ME diagnosed among staff on third-floor of hospital--

Roseville is a town adjacent to Sacramento.

3. Elk Grove High School, a suburb of Sacramento--epidemic among teachers and

students

My point here is that groups of people came down with the disease due to

viral or chemical assault, and excess psychological stress does not explain

these

epidemic

outbreaks.

For me personally, I handled stress quite well BEFORE getting the disease,

Myalgic

Encephalomyelitis,

but of course a serious neuroimmune disease THEREAFTER makes one prone to all

kinds of

stressors.

However, the CDC is trying to build up the case for a genetic susceptibility

to

stress from birth.

This is just wrongheaded, as I said, because for the first 38 years of my life,

I

showed no

particular susceptibility to stress. I handled stress quite well, thank you.

And also I'm not a Type A personality.

As one former park ranger in my support group says, there was only one Type A

personality

in the whole group of park rangers that came down with Myalgic Encephalomyelitis

in

the 90s.

I do not need any doctor to use the words " fatigue " or " stress " in any

medical

appointment.

Du Pre

Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

" By words the mind is winged. " Aristophanes

Website for National Alliance for Myalgic Encephalomyelitis:

http://www.name-us.org

[Guest guest]

Mercuria <mercuria@...> wrote:

> Part of the answer is that people who are physically weakened --

say, by physiological stressors like overwork, poor diet, lack of

sleep, weeks and months in high-adrenaline, high-cortisol

situations, or prior illness -- are much more susceptible to forming

colonies of it in their stomachs. Which is why doctors seemed to

notice that a lot of people with ulcers were also people under

stress.

>

> Yes, it was a stupid logical error to assume that correlation

implied causality. (It usually is.) But it was precisely because the

correlation was so strong that it took an entire generation for the

h. pylori discovery to gain credence. The doctors knew that much

(not all, but a majority) of what they saw clinically appeared to

fit the stress model; and, statistically, they weren't wholly wrong.

The problem, of course, was that merely alleviating the stress did

> nothing to kill the bacteria once it was established.

>

> So, hey, thanks for proving my point.

>

> It's NOT either-or, no matter how much you might insist otherwise.

>

> Sara

>

Barry Marshalls demonstration was by giving himself ulcers to

prove his point. The correlation between stress and ulcers was

strong only because the heightened inflammatory response from

bacterial infection releases cytokines which lowers stress tolerance.

It's not " either-or " , it's a matter of complete reversal of the

cause for the association. They were completely wrong.

Psychologizers can be proven completely wrong, yet they will still

say they were right anyway.

Thanks for proving my point.

-

[Guest guest]

" Du Pre " wrote:

> For example, here in the Sacramento area, there were three outbreaks

of Myalgic Encephalomyelitis (I hate to use the coined term--CFS---of

the CDC):

> 1. Mercy San Hospital---200 hospital staff & spreading to

children of hospital staff and from there to the children's teachers

> 2. Rosedale Hospital in Roseville, California--

>

For a good example of a " CFS description-before-there-was-CFS " , Dr

h Ryll tells it like it is, same as Dr Cheney and Dr did

in 1985 when it was " Incline Mystery Disease " , three years before CFS

was invented.

http://www.ncf-net.org/forum/InfVenulitis-Fall05.htm

-

[Guest guest]

:

With all due respect, you're missing the point here.

You and keep talking about " psychological stress. " The rest of

us are talking about physiological stress -- a condition which

psychological stress has been well-proven to contribute to, but

hardly tells the whole story.

This is a huge part of the larger problem, in my estimation. I'm here

talking about what happened to me when I had the year from hell. And

you keep telling me I'm describing something that was all in my head.

This was not all in my head. The year I got sick began with me in a

100-hour-a-week job that had me sleeping under my desk for six hours

a night, for nights on end, for 10 weeks straight. I was living on

coffee on Chinese food. I did not bathe more than twice a week. I was

managing two other people, and five projects, and running my

equipment 24/7. And it was still more work than we could get done.

Then, the day that project ended, I got divorced. Anybody who doesn't

think that profound and sudden grief (I really had not seen this

coming) doesn't cause physical breakdowns hasn't lost someone they

loved dearly. I moved home to Mom, stopped eating entirely, and cried

for the next six weeks. I only slept when I resorted to Valium.

Then, I got another job that also required 100-hour weeks for the

next three months -- also while eating strange food and also sharing

quarters from people from over 60 countries, who were carrying who-

knows-what bugs. I walked 15 miles a day in that job. By the time it

was over, I was exhausted.

The week that job ended, I was rear-ended while parked out front of a

building in West LA. Five days later, not looking, I plowed the same

car into the back of another vehicle a few miles away. The car was

nearly totated. My neck didn't even fare that well, and hasn't been

the same since.

Still, another job was waiting, this one with a political campaign. I

was driving 1200 miles a week, sleeping on couches (with my bad

neck), and subsisting on rubber chicken. I was also falling apart

financially, so I couldn't afford to see doctors for the increasing

numbers of minor illnesses that kept cropping up. It was now

September; I'd been under constant stress since early February. My

body was starting to show the wear and tear.

In mid-October, I got a bladder infection that, within the space of

four hours, exploded into a kidney infection. Without insurance, I

couldn't afford to be hospitalized, so they sent me home with a

massive bottle of doxycyline (an antibiotic that makes me grotesquely

ill) and told me to stay off my feet for the next two weeks.

In late October, my beloved great-uncle died. I got up out of my sick

bed, wobbly but committed, and flew to Phoenix for the funeral.

I got back on my feet just in time for Election Day -- now seriously

weak, but at least strong enough to pack up a rental truck move once

more (this would be the fourth move in the past eight months) to the

Bay Area. That winter -- the winter of '84-85, when CFS was sweeping

California (Incline was hardly the whole story that year) -- was the

winter I finally collapsed.

Gee? You think my grueling work schedule, four moves, a divorce, a

death in the family, financial stress, months on end of bad food and

worse sleep, and two car accidents might have made me somewhat, ahem,

fragile?

What I am talking about here is NOT mere " psychological stress. " I'm

talking about being blown out emotionally, physically, financially,

and every other way a human being can be. That's what " allostatic

load " is: a prolonged state in which the body is sustaining low-grade

abuse on many fronts, to the point where it eventually ceases to

function well enough to avoid damage. (And it did damage me: by

February of that winter, my thyroid was in total free-fall, to the

point where my periods simply stopped for 10 months.)

As long as those of us who experienced the stress keep saying

" physiological stress " and people like you keep telling us we're

talking about something that was all in our heads, we will not be

having the same conversation.

And, in fact, talking to you is going to continue to feel a hell of a

lot like talking to all those other people who minimize and

disbelieve what we've experienced.

In short: You are doing it again. Please STOP.

Sara

On Sep 7, 2006, at 8:07 PM, Du Pre wrote:

> Hello,

> I think I would agree with on this issue regarding the fact that

> Myalgic Encephalomyelitis/CFS epidemics break out among a group of

> people

> because of infection or toxic chemical exposure. Some of those

> people may

> have a little more psychological stress that others; however, this

> stress idea

> did not deserve to become front and center issue with the newly

> coined disease name,

> Chronic Fatigue Syndrome.

> For example, here in the Sacramento area, there were three

> outbreaks of

> Myalgic Encephalomyelitis (I hate to use the coined term--CFS---of

> the CDC):

> 1. Mercy San Hospital---200 hospital staff & spreading to

> children of hospital

> staff

> and from there to the children's teachers

> 2. Rosedale Hospital in Roseville, California--

> 11 or more cases of ME diagnosed among staff on third-floor of

> hospital--

> Roseville is a town adjacent to Sacramento.

> 3. Elk Grove High School, a suburb of Sacramento--epidemic among

> teachers and

> students

>

> My point here is that groups of people came down with the

> disease due to

> viral or chemical assault, and excess psychological stress does not

> explain these

> epidemic

> outbreaks.

> For me personally, I handled stress quite well BEFORE getting

> the disease, Myalgic

> Encephalomyelitis,

> but of course a serious neuroimmune disease THEREAFTER makes one

> prone to all kinds of

> stressors.

> However, the CDC is trying to build up the case for a genetic

> susceptibility to

> stress from birth.

> This is just wrongheaded, as I said, because for the first 38 years

> of my life, I

> showed no

> particular susceptibility to stress. I handled stress quite well,

> thank you.

> And also I'm not a Type A personality.

> As one former park ranger in my support group says, there was only

> one Type A

> personality

> in the whole group of park rangers that came down with Myalgic

> Encephalomyelitis in

> the 90s.

> I do not need any doctor to use the words " fatigue " or " stress "

> in any medical

> appointment.

> Du Pre

> Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

> " By words the mind is winged. " Aristophanes

> Website for National Alliance for Myalgic Encephalomyelitis: http://

> www.name-us.org

>

>

>

>

>

[Guest guest]

Sara -

hug from Colin..

What else can I say, except I have been there, and am with you.

Mercuria wrote:

>

> :

>

> With all due respect, you're missing the point here.

>

> You and keep talking about " psychological stress. " The rest of

> us are talking about physiological stress -- a condition which

> psychological stress has been well-proven to contribute to, but

> hardly tells the whole story.

>

> This is a huge part of the larger problem, in my estimation. I'm here

> talking about what happened to me when I had the year from hell. And

> you keep telling me I'm describing something that was all in my head.

>

> This was not all in my head. The year I got sick began with me in a

> 100-hour-a-week job that had me sleeping under my desk for six hours

> a night, for nights on end, for 10 weeks straight. I was living on

> coffee on Chinese food. I did not bathe more than twice a week. I was

> managing two other people, and five projects, and running my

> equipment 24/7. And it was still more work than we could get done.

>

> Then, the day that project ended, I got divorced. Anybody who doesn't

> think that profound and sudden grief (I really had not seen this

> coming) doesn't cause physical breakdowns hasn't lost someone they

> loved dearly. I moved home to Mom, stopped eating entirely, and cried

> for the next six weeks. I only slept when I resorted to Valium.

>

> Then, I got another job that also required 100-hour weeks for the

> next three months -- also while eating strange food and also sharing

> quarters from people from over 60 countries, who were carrying who-

> knows-what bugs. I walked 15 miles a day in that job. By the time it

> was over, I was exhausted.

>

> The week that job ended, I was rear-ended while parked out front of a

> building in West LA. Five days later, not looking, I plowed the same

> car into the back of another vehicle a few miles away. The car was

> nearly totated. My neck didn't even fare that well, and hasn't been

> the same since.

>

> Still, another job was waiting, this one with a political campaign. I

> was driving 1200 miles a week, sleeping on couches (with my bad

> neck), and subsisting on rubber chicken. I was also falling apart

> financially, so I couldn't afford to see doctors for the increasing

> numbers of minor illnesses that kept cropping up. It was now

> September; I'd been under constant stress since early February. My

> body was starting to show the wear and tear.

>

> In mid-October, I got a bladder infection that, within the space of

> four hours, exploded into a kidney infection. Without insurance, I

> couldn't afford to be hospitalized, so they sent me home with a

> massive bottle of doxycyline (an antibiotic that makes me grotesquely

> ill) and told me to stay off my feet for the next two weeks.

>

> In late October, my beloved great-uncle died. I got up out of my sick

> bed, wobbly but committed, and flew to Phoenix for the funeral.

>

> I got back on my feet just in time for Election Day -- now seriously

> weak, but at least strong enough to pack up a rental truck move once

> more (this would be the fourth move in the past eight months) to the

> Bay Area. That winter -- the winter of '84-85, when CFS was sweeping

> California (Incline was hardly the whole story that year) -- was the

> winter I finally collapsed.

>

> Gee? You think my grueling work schedule, four moves, a divorce, a

> death in the family, financial stress, months on end of bad food and

> worse sleep, and two car accidents might have made me somewhat, ahem,

> fragile?

>

> What I am talking about here is NOT mere " psychological stress. " I'm

> talking about being blown out emotionally, physically, financially,

> and every other way a human being can be. That's what " allostatic

> load " is: a prolonged state in which the body is sustaining low-grade

> abuse on many fronts, to the point where it eventually ceases to

> function well enough to avoid damage. (And it did damage me: by

> February of that winter, my thyroid was in total free-fall, to the

> point where my periods simply stopped for 10 months.)

>

> As long as those of us who experienced the stress keep saying

> " physiological stress " and people like you keep telling us we're

> talking about something that was all in our heads, we will not be

> having the same conversation.

>

> And, in fact, talking to you is going to continue to feel a hell of a

> lot like talking to all those other people who minimize and

> disbelieve what we've experienced.

>

> In short: You are doing it again. Please STOP.

>

> Sara

>

> On Sep 7, 2006, at 8:07 PM, Du Pre wrote:

>

> > Hello,

> > I think I would agree with on this issue regarding the fact that

> > Myalgic Encephalomyelitis/CFS epidemics break out among a group of

> > people

> > because of infection or toxic chemical exposure. Some of those

> > people may

> > have a little more psychological stress that others; however, this

> > stress idea

> > did not deserve to become front and center issue with the newly

> > coined disease name,

> > Chronic Fatigue Syndrome.

> > For example, here in the Sacramento area, there were three

> > outbreaks of

> > Myalgic Encephalomyelitis (I hate to use the coined term--CFS---of

> > the CDC):

> > 1. Mercy San Hospital---200 hospital staff & spreading to

> > children of hospital

> > staff

> > and from there to the children's teachers

> > 2. Rosedale Hospital in Roseville, California--

> > 11 or more cases of ME diagnosed among staff on third-floor of

> > hospital--

> > Roseville is a town adjacent to Sacramento.

> > 3. Elk Grove High School, a suburb of Sacramento--epidemic among

> > teachers and

> > students

> >

> > My point here is that groups of people came down with the

> > disease due to

> > viral or chemical assault, and excess psychological stress does not

> > explain these

> > epidemic

> > outbreaks.

> > For me personally, I handled stress quite well BEFORE getting

> > the disease, Myalgic

> > Encephalomyelitis,

> > but of course a serious neuroimmune disease THEREAFTER makes one

> > prone to all kinds of

> > stressors.

> > However, the CDC is trying to build up the case for a genetic

> > susceptibility to

> > stress from birth.

> > This is just wrongheaded, as I said, because for the first 38 years

> > of my life, I

> > showed no

> > particular susceptibility to stress. I handled stress quite well,

> > thank you.

> > And also I'm not a Type A personality.

> > As one former park ranger in my support group says, there was only

> > one Type A

> > personality

> > in the whole group of park rangers that came down with Myalgic

> > Encephalomyelitis in

> > the 90s.

> > I do not need any doctor to use the words " fatigue " or " stress "

> > in any medical

> > appointment.

> > Du Pre

> > Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

> <http://www.angelfire.com/poetry/soareagle/index.html>

> > " By words the mind is winged. " Aristophanes

> > Website for National Alliance for Myalgic Encephalomyelitis: http://

> > www.name-us.org

> >

> >

> >

> >

> >