Re: Finally, it's official - stress depresses immune function via neuropeptide Y

December 5, 2005

> AUSTRALIAN scientists have proved what many people have suspected

> for years: stress makes you sick.

>

I remember people saying that " Stress causes Herpes " , as if it really

could " cause " something like that.

You know how Herpes virus infections tend to flare up and go into

remission? Well, people would have some stressful event and say that

it this was responsible for their Herpes, as if somehow by just

avoiding all stress, they would 'never have Herpes'.

Well, no amount of stress can create a virus or cause Herpes in

someone who doesn't have the virus. It can only suppress immune

function and allow reactivation of a latent infection.

So whatever the role of stress in exacerbating CFS is, we know this

much: NO AMOUNT OF STRESS IS CONSISTENTLY KNOWN TO RESULT IN CFS.

Stress might reactivate an infection in CFS victims, but it certainly

cannot " make you sick with CFS " unless you had some infection waiting

to exploit the opportunity.

Of course, this won't slow down psychologizers who firmly believe

that CFS is " all in your head " . If they can blame Tuberculosis, MS,

GWI, Ulcers, ADD/ADHD, autism and all the other illnesses they've got

their hooks into on stress and behavioral disorders, they will

certainly not pause for a minute to give CFSers the benefit of the

doubt or any credibility whatsoever.

However I think it will be useful to let OTHERS see that

psychologizers arguments of stress causality don't quite match the

amazing historical inability of stress to normally cause CFS in

people under some of the most fearful stress imaginable, and yet

somehow CFS crops up in people who are under no abnormal stress levels

at all.

-

December 5, 2005

I agree with some of what you said, but I do disagree about stress

being a high trigger in CFS and FM. Stress seems to be the universal

factor in triggering both illnesses from what ive seen. With FM, its

usually truama (car accident). With Cfs its usually some prolong

stress that we may or may not reconize. Stress can be defined as

emotional, environmental or biological (viruses, bacteria etc.).

So i do think that CFS/FM patients and the 'syndrome' diseases have

a less ability to deal with stress because of one of the above

reasons, stress tolerance may be comprimised setting one up for

immune dysregulation diseases. Neuropeptide Y may be involved. Low

NPY correlates to anxiety interestingly. CREB controls NPY and this

can be upregulated by citrus bioflavonoids.

JL

>

> > AUSTRALIAN scientists have proved what many people have

suspected

> > for years: stress makes you sick.

> >

>

> I remember people saying that " Stress causes Herpes " , as if it

really

> could " cause " something like that.

> You know how Herpes virus infections tend to flare up and go into

> remission? Well, people would have some stressful event and say

that

> it this was responsible for their Herpes, as if somehow by just

> avoiding all stress, they would 'never have Herpes'.

> Well, no amount of stress can create a virus or cause Herpes in

> someone who doesn't have the virus. It can only suppress immune

> function and allow reactivation of a latent infection.

> So whatever the role of stress in exacerbating CFS is, we know

this

> much: NO AMOUNT OF STRESS IS CONSISTENTLY KNOWN TO RESULT IN CFS.

> Stress might reactivate an infection in CFS victims, but it

certainly

> cannot " make you sick with CFS " unless you had some infection

waiting

> to exploit the opportunity.

> Of course, this won't slow down psychologizers who firmly believe

> that CFS is " all in your head " . If they can blame Tuberculosis,

MS,

> GWI, Ulcers, ADD/ADHD, autism and all the other illnesses they've

got

> their hooks into on stress and behavioral disorders, they will

> certainly not pause for a minute to give CFSers the benefit of the

> doubt or any credibility whatsoever.

> However I think it will be useful to let OTHERS see that

> psychologizers arguments of stress causality don't quite match the

> amazing historical inability of stress to normally cause CFS in

> people under some of the most fearful stress imaginable, and yet

> somehow CFS crops up in people who are under no abnormal stress

levels

> at all.

> -

>

December 5, 2005

" jasonlbreckenridge " wrote:

>

> I agree with some of what you said, but I do disagree about stress

> being a high trigger in CFS and FM. Stress seems to be the

universal factor in triggering both illnesses from what ive seen.

With FM, its usually truama (car accident). With Cfs its usually

some prolong stress that we may or may not reconize. Stress can be

defined as emotional, environmental or biological (viruses,

bacteria etc.).

>

For those of us in the Incline Village epidemic, HHV6a seemed to be

the commonality as determined by Dr .

If one defines stress as anything which perturbs immune response,

there is virtually NOTHING that can't be defined as " stress " , which

kind of defeats the purpose of using a term that is supposed to

connote the presence of an abnormal challenge outside of the range

of customary norms.

But that broad definition does allow psychologizers to say " See?

Toldja so! Stress is the cause of EVERYTHING " , just as we said!

Bacteria and viruses are " infections " .

Toxic exposures are " poisons " .

Car crashes, bullet and stab wounds are " trauma " .

But " stress " is...?

-

December 5, 2005

there is 'negative stress' and 'postive stress'. positive stress

motivates humans to accomplish incredible things. negative stress

obviously brings us down. stress is needed to motivate humans to

achieve, its about what type, how much etc. most Cfs people are Type-

A personalities, with poor stress coping, abundant endogenous

viruses and bad genes. I am not a pscoloigzer or whatever but coping

with any negative stressor , or eliminating it will help Cfs.

> >

> > I agree with some of what you said, but I do disagree about

stress

> > being a high trigger in CFS and FM. Stress seems to be the

> universal factor in triggering both illnesses from what ive seen.

> With FM, its usually truama (car accident). With Cfs its usually

> some prolong stress that we may or may not reconize. Stress can be

> defined as emotional, environmental or biological (viruses,

> bacteria etc.).

> >

>

> For those of us in the Incline Village epidemic, HHV6a seemed to

be

> the commonality as determined by Dr .

> If one defines stress as anything which perturbs immune response,

> there is virtually NOTHING that can't be defined as " stress " ,

which

> kind of defeats the purpose of using a term that is supposed to

> connote the presence of an abnormal challenge outside of the range

> of customary norms.

> But that broad definition does allow psychologizers to say " See?

> Toldja so! Stress is the cause of EVERYTHING " , just as we said!

> Bacteria and viruses are " infections " .

> Toxic exposures are " poisons " .

> Car crashes, bullet and stab wounds are " trauma " .

> But " stress " is...?

>

> -

>

December 5, 2005

" jasonlbreckenridge " wrote:

there is 'negative stress' and 'postive stress'. positive stress

motivates humans to accomplish incredible things. negative stress

obviously brings us down. stress is needed to motivate humans to

achieve, its about what type, how much etc. most Cfs people are Type-

A personalities, with poor stress coping, abundant endogenous

viruses and bad genes. I am not a pscoloigzer or whatever but

coping with any negative stressor , or eliminating it will help Cfs.

>

Couldn't hurt, but I think most people figure that avoiding any

negative stress is a normal and natural response to anything that

makes us feel bad, and have always tried to control and eliminate

anything negative - as best they can.

The trouble with psychologizers is that no matter how much we

explain that we are normal people, leading normal lives, enduring

normal stress in a normal way, and that we've been overwhelmed by

a " flu-like illness " that has dropped us in our tracks, they keep

insisting that the illness is irrelevant and we should concentrate

on correcting our dysfunctional behaviors and negative attitudes.

This is comparable to someone with Herpes seeking medical help and

instead being told that since stress can induce flare-ups, they

should get counseling and avoid all stress. Furthermore,

psychologizers assume that since stress is associated with flare-

ups, that any signs of infection are an indication of an

inappropriate mental attitude, which, if corrected or controlled,

would have kept the virus under control. They interprete any

flare-up as proof that the sufferer didn't keep their mind under

control.

Sure, avoiding " negative stress " is a good thing, but does anybody

really need to be told that? Or worse, to be blamed for " bad

thinking " in the face of an illness that really doesn't seem to care?

This concept of CFSers being type A personalities with poor stress

coping habits is something that psychologizers spread because they

blame CFSers incessant complaints on an inability to cope instead of

a " real " illness. If there is any 'type A' association to the

severity of patients complaints, it might just be that aggressive

personality types tend to reject the doctors verdict somewhat more

strenuously than others.

Funny how psychologizers can get away with blaming CFS on being too

lazy and at the same time, blame it on being type A supermotivated

burnout cases. Can't they see this is completely opposite?

We have two diametrically opposed concepts of " blame the patient "

psychologizers. What we need to do is point out that the true

obstacle to having their concept prevail is not CFSers, but the

group holding the extreme opposite view. Then they can declare war

on each other and hopefully have less time to try and destroy CFSers

lives and credibility.

-

December 5, 2005

, I really love your posts on this stuff. They are just perfect.

I was going to say something about the idea that we're type-A's with

" poor stress coping " , but you said it so well. We need to stop

spreading this type of misperception about ourselves. There's a huge

danger in wanting to get well so desperately that we pathologise

certain things about ourselves... wanting them to be wrong with us so

we can 'fix' them.

I now realise I have and always have had excellent stress-coping

skills. I was led to believe differently by psychologisers. I believed

them because I wanted to, as I thought it would get me well. There was

a time, before the bad virus that triggered this severe stage, that

avoiding 'negative' things helped me have some type of a life. I would

never want to be this sick, but in some way I'm grateful because I

know what it's like for those strategies not to work anymore. And

since becoming this sick, I've realised it's not my fault or anything

to do with how I cope with things. And trying to avoid anything

'negative' skewed my view on life enormously.

I wholeheartedly agree that 'stressors' and stress are an inseparable

part of life, and that we naturally try to avoid them anyway. A big

problem is that once you have this illness, things that maybe you once

were applauded for you are now considered to be 'stressing' about. Eg

The Type A things - suddenly I had people telling me I'm an

overachiever, when actually I just had really normal ambitions. I've

been told things like 'because you're so intelligent, you stress out

more', which is rubbish. I've always been able to use my intelligence

to problem-solve, and felt confident and calm as a person because I

knew this about myself.

I think that if you're someone with this illness who is in a position

to cut back on things that are tiring you out or can pursue specific

strategies for coping with stress, then it's a good idea. But you

probably are already doing this anyway. But it's important to classify

what you're doing correctly - which is relieving some of the burden

because you have an illness that is in itself, an overwhelming

'stress'. There's a huge danger in saying 'I'm doing this because this

(partially) causes my illness'.

But some people aren't in this position. I don't believe recovery will

or should have to depend on lowering stress, because it means those

who can't help their situations or change them in any way will be

excluded from recovery. People making a case for stress being a

'cause' often say, we have an infection or a trigger, but it's the

stress that allows it to proliferate and emphasise that this is the

defining factor for us. But this is illogical - there's no evidence we

have more stress than non-PWCs (not counting that which our illness

causes) or that those with the highest levels of stress develop CFS.

Why don't people like the contestants on 'The Apprentice' all get

sick, if that was the case? So, logically, the thing that

differentiates us is the organic illness - whatever it really is...

infection, toxic exposure, faulty gene expression.

Some people can't change their life situations, and also, the illness

can make some of us too tired to pursue 'stress relief' options.

Options like those listed in that article like yoga, meditation or

therapy are stressful to me because they involve an exertion that is

way too much for me, physically or mentally.

Another huge problem for us is how do these people talking about

stress causing illness define stress? It's all quite relative. There's

the danger that you give anyone in authority this idea that stress

causes our sickness and they can define this to suit themselves.

I don't think I agree with this concept of positive and negative

stress either. I think stress by definition is something that pushes

us beyond our limits, and beyond challenging them in a constructive

way - to a place where we no longer feel good. I'd say 'positive

stress' could be defined as 'challenges', and 'negative stress' is

stress. It's like if you were to do a resistance exercise... there's a

point where some resistance will challenge the muscle and make it

grow, and there's a point where too much will hurt and damage it.

I hope that collectively we move away from this idea of 'stressors'.

As I've said before, I have issue with us continually framing this

within a tired old naturopathic model when more interesting and

accurate frameworks are emerging. Naturopathic ideology has always

tried to reduce things down to a neat little theory where everything

is accounted for, hence reducing everything that damages the body to

the concept of being a 'stressor'. As said so well,

bacteria/viruses are 'infections' etc. To call them stressors implies

that their only action of note is to stress our bodies, rather than

the specific damaging actions they have. Even if you want to call this

stress, we have to be sensitive to the fact that our choice of

language is important, as the psychologisers do not use the term

'stress' this way. We don't want to give them any fodder to further

their frightening crusade.

> there is 'negative stress' and 'postive stress'. positive stress

> motivates humans to accomplish incredible things. negative stress

> obviously brings us down. stress is needed to motivate humans to

> achieve, its about what type, how much etc. most Cfs people are Type-

> A personalities, with poor stress coping, abundant endogenous

> viruses and bad genes. I am not a pscoloigzer or whatever but

> coping with any negative stressor , or eliminating it will help Cfs.

> >

>

> Couldn't hurt, but I think most people figure that avoiding any

> negative stress is a normal and natural response to anything that

> makes us feel bad, and have always tried to control and eliminate

> anything negative - as best they can.

> The trouble with psychologizers is that no matter how much we

> explain that we are normal people, leading normal lives, enduring

> normal stress in a normal way, and that we've been overwhelmed by

> a " flu-like illness " that has dropped us in our tracks, they keep

> insisting that the illness is irrelevant and we should concentrate

> on correcting our dysfunctional behaviors and negative attitudes.

> This is comparable to someone with Herpes seeking medical help and

> instead being told that since stress can induce flare-ups, they

> should get counseling and avoid all stress. Furthermore,

> psychologizers assume that since stress is associated with flare-

> ups, that any signs of infection are an indication of an

> inappropriate mental attitude, which, if corrected or controlled,

> would have kept the virus under control. They interprete any

> flare-up as proof that the sufferer didn't keep their mind under

> control.

> Sure, avoiding " negative stress " is a good thing, but does anybody

> really need to be told that? Or worse, to be blamed for " bad

> thinking " in the face of an illness that really doesn't seem to care?

> This concept of CFSers being type A personalities with poor stress

> coping habits is something that psychologizers spread because they

> blame CFSers incessant complaints on an inability to cope instead of

> a " real " illness. If there is any 'type A' association to the

> severity of patients complaints, it might just be that aggressive

> personality types tend to reject the doctors verdict somewhat more

> strenuously than others.

> Funny how psychologizers can get away with blaming CFS on being too

> lazy and at the same time, blame it on being type A supermotivated

> burnout cases. Can't they see this is completely opposite?

> We have two diametrically opposed concepts of " blame the patient "

> psychologizers. What we need to do is point out that the true

> obstacle to having their concept prevail is not CFSers, but the

> group holding the extreme opposite view. Then they can declare war

> on each other and hopefully have less time to try and destroy CFSers

> lives and credibility.

> -

>

December 6, 2005

I agree about the whole psychologing thing overall in what both of

you are saying, seriously. I just view this differently I guess -

from a larger , perhaps too big of picture. For example, What about

oxidative stress? It actually has the word 'stress' in it because

that is what it is to the body biologially, but really its the

breaking down and destruction of tissues from reactive oxygen

molecules which is a normal part of aging. How and why would we

break down that term even further, you know? Also, there is solid

evidence that people with Fibromyalia and CFS due indeed have pre-

existing psycological disorders (anxiety, post tramtic stress,

childhood truama, Fm-car accidents etc..). I can attest that i have

always has social anxiety, though it never really injured me, until

i went to college with this social anxiety, had a fulltime

girlfriend, my own apartment, full time job, and starting eating not

so well, all stressors in my case that built up and exploded in my

face with a sinus infection and EBV reativation.

I am not trying to be anti-serious-immune problem in CFS, i actually

believe that, but I think that stress , since it can be biologially,

environmental and psycological all has to be accounted for in

initating any disease process. Sugar and hi GI foods is stress to

the body, and some people get diseases like diabetes from it, again

the core concept is who what when where how a negative stressor

created a disease or phsycal ailment.

I think I am looking more from the overall top view of life in this

case I guess. I really do think stress, atitude, ambition etc all

correlate to disease and healthy living. There are people much worse

off than us, that are very happy and not stressed, successful, or

famous.

I think its coming down to the fact that CFS has been treated so

terribly that we all are a bit resentcful of the whole world of

psycology and the word stress.

My keyboard keys are stickin sorry for these typos.

JL

> > there is 'negative stress' and 'postive stress'. positive

stress

> > motivates humans to accomplish incredible things. negative

stress

> > obviously brings us down. stress is needed to motivate humans

to

> > achieve, its about what type, how much etc. most Cfs people are

Type-

> > A personalities, with poor stress coping, abundant endogenous

> > viruses and bad genes. I am not a pscoloigzer or whatever but

> > coping with any negative stressor , or eliminating it will help

Cfs.

> > >

> >

> > Couldn't hurt, but I think most people figure that avoiding any

> > negative stress is a normal and natural response to anything

that

> > makes us feel bad, and have always tried to control and

eliminate

> > anything negative - as best they can.

> > The trouble with psychologizers is that no matter how much we

> > explain that we are normal people, leading normal lives,

enduring

> > normal stress in a normal way, and that we've been overwhelmed

by

> > a " flu-like illness " that has dropped us in our tracks, they

keep

> > insisting that the illness is irrelevant and we should

concentrate

> > on correcting our dysfunctional behaviors and negative attitudes.

> > This is comparable to someone with Herpes seeking medical help

and

> > instead being told that since stress can induce flare-ups, they

> > should get counseling and avoid all stress. Furthermore,

> > psychologizers assume that since stress is associated with flare-

> > ups, that any signs of infection are an indication of an

> > inappropriate mental attitude, which, if corrected or

controlled,

> > would have kept the virus under control. They interprete any

> > flare-up as proof that the sufferer didn't keep their mind under

> > control.

> > Sure, avoiding " negative stress " is a good thing, but does

anybody

> > really need to be told that? Or worse, to be blamed for " bad

> > thinking " in the face of an illness that really doesn't seem to

care?

> > This concept of CFSers being type A personalities with poor

stress

> > coping habits is something that psychologizers spread because

they

> > blame CFSers incessant complaints on an inability to cope

instead of

> > a " real " illness. If there is any 'type A' association to the

> > severity of patients complaints, it might just be that

aggressive

> > personality types tend to reject the doctors verdict somewhat

more

> > strenuously than others.

> > Funny how psychologizers can get away with blaming CFS on being

too

> > lazy and at the same time, blame it on being type A

supermotivated

> > burnout cases. Can't they see this is completely opposite?

> > We have two diametrically opposed concepts of " blame the

patient "

> > psychologizers. What we need to do is point out that the true

> > obstacle to having their concept prevail is not CFSers, but the

> > group holding the extreme opposite view. Then they can declare

war

> > on each other and hopefully have less time to try and destroy

CFSers

> > lives and credibility.

> > -

> >

>

December 6, 2005

Thanks and for your very logical and very articulate

thoughts on this subject.

One of the things I really hate about CFIDS (and there are so many

things to choose from) is being told that stress causes it. I really

appreciate having this misconception rebutted so elegantly. It

really helps me to cope with this illness.

, I know your intentions are good and I know that stress

reduction is good for just about everyone, but stress reduction will

not cure CFIDS and we need to put to death the idea that stress is in

any way integral to the illness of CFIDS in the vast, vast majority

of cases, anyway.

Then doctors and researchers may be able to get the funding needed

and will be able to work on real solutions to our illness without

having to deal with the scorn from " mainstream medecine " .

Tom

December 6, 2005

On Dec 5, 2005, at 2:16 PM, wrote:

> I was going to say something about the idea that we're type-A's with

> " poor stress coping " , but you said it so well. We need to stop

> spreading this type of misperception about ourselves. There's a huge

> danger in wanting to get well so desperately that we pathologise

> certain things about ourselves... wanting them to be wrong with us so

> we can 'fix' them....

There's a fine line here. I do believe that stress plays a role in

the illness, though it's not remotely the role the shrinks like to

think it plays.

I used to be a high achiever, too. And, for a long while, I thought

that " overdoing " had something to do with my illness. I know now that

that's mostly wrong...mostly.

My understanding is that the predisposition for CFS may come on long

before the actual onset of the disease. As you say: we get hit by a

virus, by toxins, or by bad genes that set us up for a later

illness. In my case, it was almost certainly a case of " mono " I had

at age 19, though there may have been other factors and genetic

predispositions before that.

That's the first step. The second step for a great many of us occurs

later down the road when we get hit with some major life stress --

either physical or emotional -- that pulls the trigger, and away we

go into full-blown CFS. For me, this was 1984, seven years after the

mono. That year, in the space of eight months, I wrote a book, got

divorced, got a 100-hour-per-week job, moved three times, had two car

accidents in the space of a week, fell in love again, had a kidney

infection that almost hospitalized me and required a month-long

course of antibiotics I'm allergic to....Stress? What stress? I was

fine...right up until I finally went to bed and didn't get up again

for the next two years.

You are right, of course, that it's not that we're under more stress

than anyone else. Everybody has bad years like that one. What's

different about us is that our bodies have been set up by earlier

events not to tolerate high-normal stress levels as well. Most people

under the same load get a little burned out, take a vacation, and

recover. We collapse, and may not get up again for years...if ever.

I've found that managing the level of stress in my life has done much

to speed my recovery. (In the last six years, I've gone from a severe/

30% functional level to a mild/75% level, and am still improving.)

Repeatedly working myself into crashes makes me sicker in the long

run. Scrupulously avoiding them allows my body to heal. seems to

suggest that finding a sustainable level and staying at it is somehow

capitulating to the disease; but I've found that maintaining a steady

pace and being careful not to exceed it has been a critical piece of

my success over the past few years. It's how I'm " fighting " -- and

winning.

One of the gifts of ME is that it's forced me to make much more

focused choices about what matters and where my life priorities lie.

Choosing the trade-offs -- skipping a dinner party on Friday night

and turning in early so I'll have the energy to take my kids to Harry

Potter on Saturday afternoon -- is no different than my diabetic aunt

making food exchanges to manage her blood sugar level. She's working

within her limits, picking and choosing so she can have more of what

she wants and stay well. And so am I.

The longer I do that, the healthier I get, and the more I can do in

the long run. I'm taking another big step next month, going back to

grad school part-time. I've been working up to this for the last

couple years, and I think I'm ready to handle it.

> I wholeheartedly agree that 'stressors' and stress are an inseparable

> part of life, and that we naturally try to avoid them anyway. A big

> problem is that once you have this illness, things that maybe you once

> were applauded for you are now considered to be 'stressing' about. Eg

> The Type A things - suddenly I had people telling me I'm an

> overachiever, when actually I just had really normal ambitions. I've

> been told things like 'because you're so intelligent, you stress out

> more', which is rubbish. I've always been able to use my intelligence

> to problem-solve, and felt confident and calm as a person because I

> knew this about myself.

This is so true. Look at the list of high achievers who've gotten CFS

-- athletes, artists, musicians, businesspeople, intellectuals. Was

Blake " overachieving? " Sheesh. Give me a break.

> I think that if you're someone with this illness who is in a position

> to cut back on things that are tiring you out or can pursue specific

> strategies for coping with stress, then it's a good idea. But you

> probably are already doing this anyway.

Actually, it's embarrassing to recall how long it took me to

understand and accept that I had to do this. I considered myself

Perfectly Normal for years -- even after I got my diagnosis. I

continued to expect myself to perform at the same level I always had

-- marriage, house, kids, career, creative life, sports, all of it. I

refused to look at the fact that I was spending five days a week in

bed -- except for the constant guilt trip I ran on myself for not

" getting anything done. "

Call me Cleopatra, because I am the Queen of Denial.

Accepting the reality, cutting back, making choices, and pursuing

strategies was the beginning of recovery. But accepting the reality

was far and away the hardest part.

> But it's important to classify

> what you're doing correctly - which is relieving some of the burden

> because you have an illness that is in itself, an overwhelming

> 'stress'. There's a huge danger in saying 'I'm doing this because this

> (partially) causes my illness'.

Well...I'll happily say that NOT doing stuff does seem to be helping

me get better. Putting along in second gear (with occasional, planned-

for, well-managed bursts into third), I am healing. Trying to

maintain freeway speeds does make me sicker.

I won't say that the stress caused my illness, although I certainly

believe that it helped trigger it. But I will say that avoiding

stress is doing much to make me functional, if not well.

> But some people aren't in this position. I don't believe recovery will

> or should have to depend on lowering stress, because it means those

> who can't help their situations or change them in any way will be

> excluded from recovery.

I'm confused by this. We can't say that lowering stress is a good

thing, because not everybody can do it?

Eating a balanced, healthy diet is a good thing, but not everybody

can do it. Getting competent dental care is a good thing, but not

everybody can afford that, either. I'm not clear how the relative

appropriateness of a medical solution is related to its accessibility.

Ideally, PWCs should be able to back off, rest, collect disability,

and focus on healing to the extent that they can. I'm not sure what

purpose is served in saying that we shouldn't say that out loud,

because it's out of reach for too many people. Things that are good

are good on their own merits, regardless of who can acquire them. We

*should* have the right to live our lives at a pace we can manage,

with full support of our society.

> People making a case for stress being a

> 'cause' often say, we have an infection or a trigger, but it's the

> stress that allows it to proliferate and emphasise that this is the

> defining factor for us. But this is illogical - there's no evidence we

> have more stress than non-PWCs (not counting that which our illness

> causes) or that those with the highest levels of stress develop CFS.

I don't think this is illogical. The " stress trigger " thesis has a

lot going for it -- IF you don't separate it from the environmental,

genetic, and viral preconditions that lay the ground for that

triggering event. (It's when you divorce the two that things get weird.)

I don't think anybody reasonable would say that we have MORE stress

than other people. We just respond to the same stress load in a much

more dramatic way, because of an already-present predisposition.

> Why don't people like the contestants on 'The Apprentice' all get

> sick, if that was the case? So, logically, the thing that

> differentiates us is the organic illness - whatever it really is...

> infection, toxic exposure, faulty gene expression.

Right.

> Some people can't change their life situations, and also, the illness

> can make some of us too tired to pursue 'stress relief' options.

> Options like those listed in that article like yoga, meditation or

> therapy are stressful to me because they involve an exertion that is

> way too much for me, physically or mentally.

This is where a few sessions of cognitive behavioral therapy CAN be

really useful, IMHO. As you say, one person's " stress relief options "

are another person's poison. The trick is to find what reduces *your*

stress level, regardless of what " experts " think should work. The

solutions must be personally tuned to where you are, what resources

you have, and what your priorities in life are. CBT is, in fact, an

excellent tool for clarifying that kind of thing. It's patently

ridiculous to think it can cure ME -- but it can help you get

creative about how you're going to live better with it.

> Another huge problem for us is how do these people talking about

> stress causing illness define stress? It's all quite relative. There's

> the danger that you give anyone in authority this idea that stress

> causes our sickness and they can define this to suit themselves.

That's true. What I consider undue stress, you may consider an

exhilerating challenge -- or just another routine, everyday matter.

Still, there are a handful of common life stressors that seem to hit

everybody pretty hard. Marriage, divorce, pregnancy, loss of parents,

moving, job changes, crime, accidents and surgeries...these are major

life events that do add significantly to most people's emotional and

physical load.

My husband is a management consultant specializing in the effects of

work stress on people. His description of what happens to people's

health, cognition, and quality of work when they put in more than

three 60-hour weeks in a row, or simply lose one hour of sleep a

night for a week, are truly frightening. That's not even " stressful "

by most corporate standards today, but there's ample research

documenting that the physical and mental toll is far greater than

anyone reckons.

I guess I'm arguing that there is an objective definition of " stress "

that most people would readily recognize.

> I don't think I agree with this concept of positive and negative

> stress either. I think stress by definition is something that pushes

> us beyond our limits, and beyond challenging them in a constructive

> way - to a place where we no longer feel good. I'd say 'positive

> stress' could be defined as 'challenges', and 'negative stress' is

> stress. It's like if you were to do a resistance exercise... there's a

> point where some resistance will challenge the muscle and make it

> grow, and there's a point where too much will hurt and damage it.

Yes. Exactly.

> As said so well,

> bacteria/viruses are 'infections' etc. To call them stressors implies

> that their only action of note is to stress our bodies, rather than

> the specific damaging actions they have.

I think the bacteria/virus/iinfections play an important role in

creating the conditions for this disease. But I think physical and

mental stress do, too: it's certainly been my experience over 28

years that I consistently got sicker during times of maximum stress,

and improved somewhat when the stress released.

The key to getting well over the long term was realizing that I had

some control over the level of stress in my life, and actively

starting to manage for it in a much more conscious way.

> Even if you want to call this

> stress, we have to be sensitive to the fact that our choice of

> language is important, as the psychologisers do not use the term

> 'stress' this way. We don't want to give them any fodder to further

> their frightening crusade.

It's a tough subject, because stress does play a role -- probably in

triggering the disease process, and certainly in the way we have to

re-arrange our lives around it from there on. If we let the shrinks

turn this into a taboo subject simply because we don't accept their

definitions, we risk cutting ourselves off from strategies that may

really help us. Being that reactive means that they win -- and we lose.

So we have to be honest in defining for ourselves what " stress "

really means -- and does -- to us. It's too important to deny or

ignore...or to allow other people to define or co-opt the entire

discussion for us.

Sara

December 6, 2005

" stress reduction will

not cure CFIDS "

Yes it will if you define stress as it should be defined.

Biological, environmental, psycological. 3 types of stress, not just

psycological which everyone seems to be thinking stress is. Ever

study Dr. Hans Selye? Very important person in developing stress

theory. I suggest reading about his ideas.

If someone has CFS from living in a house with fungus, than moves

out and is cured of CFS, isnt that ridding oneself of an

environmental, or even biological stressor, leading to a cure?

Endorphins are actually the master stress 'dealing' link to immune

connection. Endorphins control the immune system. Anything that

makes you feel a negative emotion can lower endorphins and therefore

the immune system. Everything is interconnected. Its not just....

stress.... oh yeah thats not it.. i got an infection, well, why did

you get that infection......gluthathione depletion? I believe Rich

has stated in his papers that stress depletes glutathione, as well

as magnesium.

So really if you trace things back there is always a stressor.

The only real (and debatable) thing is inherted genes, that make you

less able to deal with a 'stressor' (bio, environment, psyco). This

may be the key in CFS, or it may be an aquired stressor which

evidence does support both actually.

I think in the end, it comes down to survival of the fittest, which

fits in well with the stressor concepts.

A good question is, why can some people recover, and others not. If

recovery is possible then they may have eliminated all the

stressors, or had less of them, or less of the big ones.

also, why do some people, like me, i am 23, get it early, and others

at 40.

All the herpes viruses take advantage of any stress on your body,

especially EBV. Did anyone read the NASA astronuats study? When they

were going up into space in the shuttle, there EBV titers rised

signfcantly. Good study. There is another on pubmed about stress,

EBV and its possible trigger for CFS.

JL

>

> Thanks and for your very logical and very

articulate

> thoughts on this subject.

>

> One of the things I really hate about CFIDS (and there are so many

> things to choose from) is being told that stress causes it. I

really

> appreciate having this misconception rebutted so elegantly. It

> really helps me to cope with this illness.

>

> , I know your intentions are good and I know that stress

> reduction is good for just about everyone, but stress reduction

will

> not cure CFIDS and we need to put to death the idea that stress is

in

> any way integral to the illness of CFIDS in the vast, vast

majority

> of cases, anyway.

>

> Then doctors and researchers may be able to get the funding needed

> and will be able to work on real solutions to our illness without

> having to deal with the scorn from " mainstream medecine " .

>

> Tom

>

December 6, 2005

, I appreciate what you are saying and in response to both your

messages, I wanted to write a few things.

The general use of the word 'stress' does imply psychological stress,

and it seems in this article that's what they were referring to. It's

a term that I think we need to avoid because of all the obstacles

this has already put before us, and all the heartache it has caused.

And I did mention that even as a broader concept, the involvement of

'stress' still doesn't sit that well with me. I think that if you talk

about pathogens as stressors only and therefore say that technically

getting rid of 'stress' will cure us that it only classifies these

things in terms of the fact that they overwhelm our bodies' ability to

cope, rather than their specific actions.

I think the idea that we have been exposed to high-stress situations

or trauma is meaningless without the data to show that we have been

exposed more so than others who don't develop the disease.

I agree that stress and lifestyle play a part in overall health. But

another issue for me is that we can be misled into thinking that if we

do all the things that should make you healthy, we'll get well. This

can take away from the fact that we have a specific illness that needs

a targetted treatment. I know that you definitely support the latter

idea, but I'm just speaking out against any type of promotion of the

idea that stress is a key factor.

> >

> > Thanks and for your very logical and very

> articulate

> > thoughts on this subject.

> >

> > One of the things I really hate about CFIDS (and there are so many

> > things to choose from) is being told that stress causes it. I

> really

> > appreciate having this misconception rebutted so elegantly. It

> > really helps me to cope with this illness.

> >

> > , I know your intentions are good and I know that stress

> > reduction is good for just about everyone, but stress reduction

> will

> > not cure CFIDS and we need to put to death the idea that stress is

> in

> > any way integral to the illness of CFIDS in the vast, vast

> majority

> > of cases, anyway.

> >

> > Then doctors and researchers may be able to get the funding needed

> > and will be able to work on real solutions to our illness without

> > having to deal with the scorn from " mainstream medecine " .

> >

> > Tom

> >

>

December 6, 2005

,

I do not think that " if we do all the things that should make you

healthy, we'll get well " .

Things in the past , genetics , uncontrollable situations & attitude

can hinder full progress or recovery for sure.

I wasnt posting the article for my support of it btw. Just because

it was interesting about NPY, because NPY is a very complex and

interesting peptide involved in the stress, immune and addictions.

Dopamine is involved in the addiction end, and dopamine is directly

linked to endorphins where the immune system comes in.

So actually, I was posting it in support of a physical explaination

on stress, and neuropeptides interactions.

I basically have become a life extensionist so I have a werid

perspective on how things fit together and causations and

relationships in life. I also am very postive thinker, very

optimistic most of the time. I think all these things are making me

look at stress differently.

Also, there is plenty of studies, on medline/pubmed.com (type in

some logical keywords to locate them) supporting increased childhood

stress, truamas, PTSD, GWS-link, anxiety disorders and other

pyscologial disorders both before the disease or during it in

patients with CFS, FM, PTSD, RLS, TMJ, IBS, Migraine, Anorexia

Basically - all the diseases that are linked with a common thing -

stress.

They also happen to have another link which I am working on, this

link is important and its endorphins, a master stress coper.

Its so interesting how every one of those diseases can be linked to

endorphin-dopamine function, the 'stress-anticipation-reward' system

I like to think.

I cited in an earlier post why all these diseases are linked to

endorphins, i dont think many people read it or maybe i just

explained it terribly. if anyone wants a detailed explnation on any

of those diseases and endorphins and dopamine relation, please do

ask as I am eager to respond and explain. I am currently writing a

paper on this actually which will be a long process I can see!

JL

> > >

> > > Thanks and for your very logical and very

> > articulate

> > > thoughts on this subject.

> > >

> > > One of the things I really hate about CFIDS (and there are so

many

> > > things to choose from) is being told that stress causes it. I

> > really

> > > appreciate having this misconception rebutted so elegantly.

It

> > > really helps me to cope with this illness.

> > >

> > > , I know your intentions are good and I know that stress

> > > reduction is good for just about everyone, but stress

reduction

> > will

> > > not cure CFIDS and we need to put to death the idea that

stress is

> > in

> > > any way integral to the illness of CFIDS in the vast, vast

> > majority

> > > of cases, anyway.

> > >

> > > Then doctors and researchers may be able to get the funding

needed

> > > and will be able to work on real solutions to our illness

without

> > > having to deal with the scorn from " mainstream medecine " .

> > >

> > > Tom

> > >

> >

>

December 6, 2005

" jasonlbreckenridge " < wrote:

>

> " stress reduction will

> not cure CFIDS "

>

> Yes it will if you define stress as it should be defined.

> Biological, environmental, psycological. 3 types of stress, not

just psycological which everyone seems to be thinking stress is.

Ever study Dr. Hans Selye? Very important person in developing

stress theory. I suggest reading about his ideas.<

Obviously the illness is caused by SOMETHING.

Is there anything in existence that doesn't fall into one of those

three categories?

If you define stress so broadly that it means " whatever caused the

condition " then of COURSE it would be " stress " of some type.

Which allows psychologizers to gloat with glee " SEE? Toldja so, it

was stress, just like we said. " which is not quite what they meant.

> If someone has CFS from living in a house with fungus, than moves

out and is cured of CFS, isnt that ridding oneself of an

environmental, or even biological stressor, leading to a cure?<

Yes, but if your interest in finding out what stress or stressor is

causing your illness is dismissed with " Your illness is simply

caused by stress " and they make no effort to help you determine the

toxin or pathogen responsible, and they vaguely implicate anything

and everything as stresses and stressors, it's like saying your

illness is caused by " nothing in particular and everything in

general " .

This is not useful or productive, and this illness doesn't act

like 'anything and everything'. Especially since anything and

everything isn't normally known to cause a flu-like illness from

Hell that ravages your community and destroys your life.

I think that a lot of believe that it is a definite " something "

that our parents and doctors have never seen before, judging by

their inability to recognize or believe it.

> So really if you trace things back there is always a stressor.

The only real (and debatable) thing is inherted genes, that make

you less able to deal with a 'stressor' (bio, environment, psyco).

This may be the key in CFS, or it may be an aquired stressor which

evidence does support both actually.

> JL

Sure, if stress is regarded as anything which perturbs immune

response in any way. It has to be SOMETHING, and whatever it is, if

it causes the slightest pressure or shift, why then, it qualifies

as " stress " of some type.

That's about as useful as saying " Genetic " .

Every structure and function of ANY living cell of any plant, animal

or human is determined by genes. There is absolutely NOTHING

involved with a living thing that is NOT genetic.

Saying that something is genetic isn't saying much, except that an

organic structure is involved.

So let's narrow it down to those " inherited genes " that we are

concerned with.

Well, in order to have a formerly rare and little known illness that

is cause by heritable genes, you have to " inherit " those genes.

If ME/CFS was little known and fairly rare prior to twenty years

ago, does it seem likely that people predisposed to this genetic

illness reproduced at a rate consistent with the rate of increase in

the population?

ME/CFSers would have to breed faster than rabbits to outstrip the

population with their inherited defect and cause this epidemic.

Would a fairly rare 'inherited gene' be likely to inflict upon half

of a symphony orchestra? Half a girls basketball team? Nine

teachers in a single room? Or would this rate of illness prevalence

TRANSCEND the limitations of inheritance rates of a formerly rare

illness?

If it does, then saying that " At least some cases may be genetically

inherited " is like saying " genetically inherited, except when it

isn't - which is most of the time " .

I remember getting a good laugh when FM was invented.

The doctors would say " That muscle pain you are describing is

called " Fibromyalgia " but we don't know the cause " .

" Fibromyalgia? What is that? "

" It is Greek for " muscle pain " . You can pay the receptionist on

your way out " .

Saying that ME/CFS is caused by stress and stressors is about like

that.

-

December 6, 2005

Hi Sara,

Let me just briefly explain my own history. I had this illness in a

slightly different form previously. I've had some degree of CFS always

but mostly fibromyalgia. At 19, a severe version of CFS was triggered

by the chicken pox. I was able to get extremely functional following a

good diet, doing certain natural therapies and never going outside of

my limits in terms of studying and working. Stress reduction was an

important part of this, and I felt a huge difference when I moved out

of the family home.

I was improving continually until I got some virus at age 22, and

again had a severe reaction but this time didn't get better. This time

not only was I still implementing all the same strategies as before,

but my life was fantastic. So it was ridiculous to me that suddenly I

was being told that this was all stress-related.

But I do understand having both forms - one where stress reduction

gives you an improvement, and one where it doesn't.

The point I attempted to make, and I'm sorry if it wasn't clear

enough, is that yes, stress does make this worse and if you have the

predisposition for CFS, something stressful could possibly bring it

on. But I don't believe it's the key factor, and I believe we have to

be careful about claiming that it is. I know that not everyone thinks

it's the key, but my post was to certain points made in the original

post that either directly said this or could be taken this way.

I've addressed a couple of your points below:

> There's a fine line here. I do believe that stress plays a role in

> the illness, though it's not remotely the role the shrinks like to

> think it plays.

I wasn't saying stress has no role (it can definitely make it worse),

I was speaking specifically against the idea that it's part of our

personality that we have " poor stress coping " (not against the idea

that CFS makes it hard to cope with stress).

> > I think that if you're someone with this illness who is in a position

> > to cut back on things that are tiring you out or can pursue specific

> > strategies for coping with stress, then it's a good idea. But you

> > probably are already doing this anyway.

>

> > But it's important to classify

> > what you're doing correctly - which is relieving some of the burden

> > because you have an illness that is in itself, an overwhelming

> > 'stress'. There's a huge danger in saying 'I'm doing this because this

> > (partially) causes my illness'.

>

> > But some people aren't in this position. I don't believe recovery will

> > or should have to depend on lowering stress, because it means those

> > who can't help their situations or change them in any way will be

> > excluded from recovery.

>

> I'm confused by this. We can't say that lowering stress is a good

> thing, because not everybody can do it?

^^^ I put my couple of paragraphs together there above your response

to show that I did write that people who are in the position to

relieve the burden should do so. I haven't said that nobody should

because some of us can't - I would find this absurd. To clarify,

because I can see the ambiguity here: where I wrote " I don't believe

recovery will or should have to depend on lowering stress... " I meant

'recovery should not *only* depend on this and I also meant full

recovery.

Because I'm saying when you're so far gone that everything is

stressful - trying to get your legs to move so you can see a doctor,

trying to get words out of your mouth through the searing jaw pain,

options like CBT are not viable for some. Or if there are many things

in your life that you will never be able to control - which is the

reality for many - then defining this as an illness that stress is the

*key* factor in means that we're relegating these people to a hopeless

future.

Please see below - it all ties in with the point I'm trying to make

about all of this.

> > People making a case for stress being a

> > 'cause' often say, we have an infection or a trigger, but it's the

> > stress that allows it to proliferate and emphasise that this is the

> > defining factor for us. But this is illogical - there's no evidence we

> > have more stress than non-PWCs (not counting that which our illness

> > causes) or that those with the highest levels of stress develop CFS.

>

> I don't think this is illogical. The " stress trigger " thesis has a

> lot going for it -- IF you don't separate it from the environmental,

> genetic, and viral preconditions that lay the ground for that

> triggering event. (It's when you divorce the two that things get weird.)

I'm saying - and this is my point about all of this - is that saying

it's the defining factor is simply illogical, given that we don't have

more stress than non-PWCs. If you get two groups of people with equal

amounts of stress, and one group has an organic disease and the other

doesn't, it's a simple logical deduction that the organic disease is

the defining factor. It's the variable. I wasn't saying the

'illogical' thing was that stress could be a trigger or make us worse.

I completely appreciate your articulate thoughts on all of this, and

especially thank you for your supportive comments. But I really need

to 'stress' (sorry) that this was directly in response to saying

that we have a particular disposition to being more stressed out and

that this is a causal factor, and the issue I have with that.

> It's a tough subject, because stress does play a role -- probably in

> triggering the disease process, and certainly in the way we have to

> re-arrange our lives around it from there on. If we let the shrinks

> turn this into a taboo subject simply because we don't accept their

> definitions, we risk cutting ourselves off from strategies that may

> really help us. Being that reactive means that they win -- and we lose.

>

Again, I do appreciate what you have to say on this, but I'm having

trouble clarifying my point because your responses are quite

off-the-track from what I was specifically talking about. I haven't

said that we should never talk about stress, and I even directly said

that it's to do with how we talk about stress. I wrote that it's

important to know WHY you're trying to reduce stress, and the above

reasons you mentioned are exactly why.

I hope I've made myself understood here and please know that when I

write, I just like to use a really direct style to make sure I'm

getting out what I want to say. I know it probably would seem

friendlier if I used more cushiony, flowery language, but I just can't

do that and express what I need to say as well. I'm just letting you

know that the forthrightness of my language is to do with my

conviction on things, because I know it can be misinterpreted as anger

or coldness, and I don't feel that way.

Take care,

December 6, 2005

>

> " stress reduction will not cure CFIDS "

>

> Yes it will if you define stress as it should be defined.

>

Hi .

Your post demonstrates the problem with the term stress. What you

are saying is:

You will get well if you eliminate everything that is making you sick.

That's true, but not very helpful.

Also, when people in general and medical professionals use the

term " stress " in relation to CFIDS, 99% of them (my estimate) mean

emotional and psychological stress. And that means that our problem

is psychological not physical. I know that's not what you think, but

that's what they think and it's what they think that matters.

Tom

December 6, 2005

" jasonlbreckenridge " < wrote:

> Also, there is plenty of studies, on medline/pubmed.com (type in

some logical keywords to locate them) supporting increased

childhood stress, truamas, PTSD, GWS-link, anxiety disorders and

other pyscologial disorders both before the disease or during it

in patients with CFS, FM, PTSD, RLS, TMJ, IBS, Migraine, Anorexia

>

> Basically - all the diseases that are linked with a common thing -

stress.

> Its so interesting how every one of those diseases can be linked

to endorphin-dopamine function, the 'stress-anticipation-reward'

system I like to think.

>

Professor Wessely has determined that the " stress-anticipation-

reward " system that is stimulated to produce illness in Gulf War

Veterans arises from a psychological state he calls " Risk Aversion " .

I think that may be " psychospeak " for what we uneducated folks

call " Cowardice " .

-

December 6, 2005

>

> ,

>

> I do not think that " if we do all the things that should make you

> healthy, we'll get well " .

I know - and I said that I know you understand that we have a distinct

illness. I was clarifying why I don't personally like things that

poison and disrupt our bodies to be only called stressors. I'm

expressing a personal position that I believe should be put out in

public, not saying that everyone should agree with me (this is not to

you - just a pre-emptive comment in case I'm taken that way...

it can be easy to extrapolate from strong opinions that someone is

being prohibitive about what others should say).

The above attitude does exist and I believe holds us back. In the

context I was mentioning it, I was talking about why the emphasis on

stress and stressors can feed this misperception in the CFS community.

December 6, 2005

,

You said -

" Well, in order to have a formerly rare and little known illness that

is cause by heritable genes, you have to " inherit " those genes.

If ME/CFS was little known and fairly rare prior to twenty years

ago, does it seem likely that people predisposed to this genetic

illness reproduced at a rate consistent with the rate of increase in

the population? "

CFS has been known under hundreds of names dating back to the 1700's

and its name is still be debated and probably will be forever.

Clearly this disease has been around for a long time.

http://www.anapsid.org/cnd/diagnosis/names.html

http://www.aboutchronicfatigue.org/Chronic_fatigue_history.html

http://cndsinfo.net/publications/c4-backtobasics.pdf

> >

> > " stress reduction will

> > not cure CFIDS "

> >

> > Yes it will if you define stress as it should be defined.

> > Biological, environmental, psycological. 3 types of stress, not

> just psycological which everyone seems to be thinking stress is.

> Ever study Dr. Hans Selye? Very important person in developing

> stress theory. I suggest reading about his ideas.<

>

> Obviously the illness is caused by SOMETHING.

> Is there anything in existence that doesn't fall into one of those

> three categories?

> If you define stress so broadly that it means " whatever caused the

> condition " then of COURSE it would be " stress " of some type.

> Which allows psychologizers to gloat with glee " SEE? Toldja so, it

> was stress, just like we said. " which is not quite what they meant.

>

> > If someone has CFS from living in a house with fungus, than

moves

> out and is cured of CFS, isnt that ridding oneself of an

> environmental, or even biological stressor, leading to a cure?<

>

> Yes, but if your interest in finding out what stress or stressor

is

> causing your illness is dismissed with " Your illness is simply

> caused by stress " and they make no effort to help you determine

the

> toxin or pathogen responsible, and they vaguely implicate anything

> and everything as stresses and stressors, it's like saying your

> illness is caused by " nothing in particular and everything in

> general " .

> This is not useful or productive, and this illness doesn't act

> like 'anything and everything'. Especially since anything and

> everything isn't normally known to cause a flu-like illness from

> Hell that ravages your community and destroys your life.

> I think that a lot of believe that it is a definite " something "

> that our parents and doctors have never seen before, judging by

> their inability to recognize or believe it.

>

> > So really if you trace things back there is always a stressor.

> The only real (and debatable) thing is inherted genes, that make

> you less able to deal with a 'stressor' (bio, environment, psyco).

> This may be the key in CFS, or it may be an aquired stressor

which

> evidence does support both actually.

> > JL

>

> Sure, if stress is regarded as anything which perturbs immune

> response in any way. It has to be SOMETHING, and whatever it is,

if

> it causes the slightest pressure or shift, why then, it qualifies

> as " stress " of some type.

> That's about as useful as saying " Genetic " .

> Every structure and function of ANY living cell of any plant,

animal

> or human is determined by genes. There is absolutely NOTHING

> involved with a living thing that is NOT genetic.

> Saying that something is genetic isn't saying much, except that

an

> organic structure is involved.

> So let's narrow it down to those " inherited genes " that we are

> concerned with.

> Well, in order to have a formerly rare and little known illness

that

> is cause by heritable genes, you have to " inherit " those genes.

> If ME/CFS was little known and fairly rare prior to twenty years

> ago, does it seem likely that people predisposed to this genetic

> illness reproduced at a rate consistent with the rate of increase

in

> the population?

> ME/CFSers would have to breed faster than rabbits to outstrip the

> population with their inherited defect and cause this epidemic.

> Would a fairly rare 'inherited gene' be likely to inflict upon

half

> of a symphony orchestra? Half a girls basketball team? Nine

> teachers in a single room? Or would this rate of illness

prevalence

> TRANSCEND the limitations of inheritance rates of a formerly rare

> illness?

>

> If it does, then saying that " At least some cases may be

genetically

> inherited " is like saying " genetically inherited, except when it

> isn't - which is most of the time " .

>

> I remember getting a good laugh when FM was invented.

> The doctors would say " That muscle pain you are describing is

> called " Fibromyalgia " but we don't know the cause " .

> " Fibromyalgia? What is that? "

> " It is Greek for " muscle pain " . You can pay the receptionist on

> your way out " .

> Saying that ME/CFS is caused by stress and stressors is about

like

> that.

> -

>

December 6, 2005

,

This is all about learning. Ever hear of fear conditioning, and fear

extinction? These are concepts i mentioned in the dopamine

connection and the NMDA receptors, as well as the glycine binding

site which actually binds d-serine and is involved in the

pathogenesis of many of these stress syndromes, or perhaps a better

word could be neurosomatic disorder as Dr Jay Goldstein used. He was

a pioneer or CFS/FM and other similar diseases.

I have suspected that CFS and these neurosomatic disorders are

indeed learning disorders in general. If you notice how they study

rates in anxiety studies 'conditioned place precference' 'startle

response' its very interesting to relate and learn how humans learn

and react, from birth to death, we learn, unlearn, and some of us

learn too well (Fibromyalgiaics learn pain signals too well, hence

the NMDA blockers like dextromorphan can help, which inhibit

learning, and pain).

I dont condone the purely psycological aspect, but i like to combine

all aspects of health and medicine to form a unified theory and

treatment. This is where research fails in disease, they dont look

at everything and connect the dots, because it all interconnects if

you objectively look at it, including the pyscologial aspects,

albiet much less than is emphasized, and more of a learning

disorder, neurosomatic problem i would say.

JL

>

> > Also, there is plenty of studies, on medline/pubmed.com (type in

> some logical keywords to locate them) supporting increased

> childhood stress, truamas, PTSD, GWS-link, anxiety disorders and

> other pyscologial disorders both before the disease or during it

> in patients with CFS, FM, PTSD, RLS, TMJ, IBS, Migraine, Anorexia

> >

> > Basically - all the diseases that are linked with a common

thing -

> stress.

> > Its so interesting how every one of those diseases can be linked

> to endorphin-dopamine function, the 'stress-anticipation-reward'

> system I like to think.

> >

>

> Professor Wessely has determined that the " stress-anticipation-

> reward " system that is stimulated to produce illness in Gulf War

> Veterans arises from a psychological state he calls " Risk

Aversion " .

> I think that may be " psychospeak " for what we uneducated folks

> call " Cowardice " .

> -

>

December 6, 2005

,

This misperception of stressors probably funded that study on

neuropeptide Y and stress. Now we have more biological information

to use to learn more and this is relevant because of studies such as

this :

Elevated plasma levels of neuropeptide Y in female fibromyalgia

patients PMID: 10700334

and pubmed TMJ/NPY and many other syndrome diseases that relate to

CFS and many of us here can relate.

And NPY is involved along with endorphins in stress responses. So I

think looking at the whole picture including the stress response is

a good thing because based on everthing I have seen, stress response

problems seem highly prevalant in CFS, FM etc..

A CFS person trying to change a misperception of an illness to the

outside world instead of trying to focus on their innerself,

healing, finding the cause and cure yourself because, personally, I

want to get better and I dont care what anyone thinks anymore,

though I support the cause, as a CFS patient, who typically has a

Type A personality, it strikes me as ironic that even as we are ill

that we may focus on the wrong objective or goal, which is basically

similar to the NCF's phlisophy, and they are doing and funding some

of the most important work now and in the past. If they were like

the AACFS, who plays politics in trying to convince everyone (which

is a good goal, but when you are sick you need to be selfish

sometimes if you want to cure yourself) and the AACFS hasnt funded

anything towards a cause or cure I have seen. The truth is, leave it

up to the people who can do it , Dr De Meirlier, Dr Kerr, Cheney,

. Let them represent us.

Someone reading this group right now that didnt have CFS and didnt

know anythin about it would probably label us all Type A

personalities just by the way we are conversing over this subject!

> >

> > ,

> >

> > I do not think that " if we do all the things that should make

you

> > healthy, we'll get well " .

>

> I know - and I said that I know you understand that we have a

distinct

> illness. I was clarifying why I don't personally like things that

> poison and disrupt our bodies to be only called stressors. I'm

> expressing a personal position that I believe should be put out in

> public, not saying that everyone should agree with me (this is not

to

> you - just a pre-emptive comment in case I'm taken that

way...

> it can be easy to extrapolate from strong opinions that someone is

> being prohibitive about what others should say).

>

> The above attitude does exist and I believe holds us back. In the

> context I was mentioning it, I was talking about why the emphasis

on

> stress and stressors can feed this misperception in the CFS

community.

>

December 6, 2005

>

> Thanks and for your very logical and very

articulate

> thoughts on this subject.

>

> One of the things I really hate about CFIDS (and there are so many

> things to choose from) is being told that stress causes it. I

really

> appreciate having this misconception rebutted so elegantly. It

> really helps me to cope with this illness.

>

> , I know your intentions are good and I know that stress

> reduction is good for just about everyone, but stress reduction

will

> not cure CFIDS and we need to put to death the idea that stress is

in

> any way integral to the illness of CFIDS in the vast, vast

majority

> of cases, anyway.

>

> Then doctors and researchers may be able to get the funding needed

> and will be able to work on real solutions to our illness without

> having to deal with the scorn from " mainstream medecine " .

>

> Tom

Hi Tom

I understand what you are all saying but if one ignores or denies

the stress angle and doesn't learn to deal with it in a healthier

way then there would be no hope of any cure or real improvement no

matter what else you did to your body by way of detoxification,

antibiotics, amalgam removal, etc.

The key here is the adrenals they only have a limited capacity to

function and there are so many studies which show how cortisol is

depleted later in the illness. Once this happens you aren't going

to feel well unless you take extra cortisol or help your adrenals to

recover (if they can) by learning to deal with the stresses in life

in a healthier way than previously; that can only be beneficial.

Denial would be just keep a person with CFS sick.

Pam

December 6, 2005

>

> ,

>

> This misperception of stressors probably funded that study on

> neuropeptide Y and stress. Now we have more biological information

> to use to learn more and this is relevant because of studies such

as

> this :

>

> Elevated plasma levels of neuropeptide Y in female fibromyalgia

> patients PMID: 10700334

>

> and pubmed TMJ/NPY and many other syndrome diseases that relate to

> CFS and many of us here can relate.

>

> And NPY is involved along with endorphins in stress responses. So

I

> think looking at the whole picture including the stress response

is

> a good thing because based on everthing I have seen, stress

response

> problems seem highly prevalant in CFS, FM etc..

>

> A CFS person trying to change a misperception of an illness to the

> outside world instead of trying to focus on their innerself,

> healing, finding the cause and cure yourself because, personally,

I

> want to get better and I dont care what anyone thinks anymore,

> though I support the cause, as a CFS patient, who typically has a

> Type A personality, it strikes me as ironic that even as we are

ill

> that we may focus on the wrong objective or goal, which is

basically

> similar to the NCF's phlisophy, and they are doing and funding

some

> of the most important work now and in the past. If they were like

> the AACFS, who plays politics in trying to convince everyone

(which

> is a good goal, but when you are sick you need to be selfish

> sometimes if you want to cure yourself) and the AACFS hasnt funded

> anything towards a cause or cure I have seen. The truth is, leave

it

> up to the people who can do it , Dr De Meirlier, Dr Kerr, Cheney,

> . Let them represent us.

>

> Someone reading this group right now that didnt have CFS and didnt

> know anythin about it would probably label us all Type A

> personalities just by the way we are conversing over this subject!

>

Hi

I have come to the same conclusion as you, it has taken 5 years for

me to be able to say this and I can feel the difference in my body

now that I am trying to remove the " Type A " bit of my personality.

It is going to be hard work but at least I am now aware. I would

love to know how many Type B personalities develop this illness - a

very tiny proportion I am sure, they would have been happy not to

push themselves to do more when feeling sick, they wouldn't feel

guilty about taking time off to rest cos they were ill. This is

very unlike a Type A personality who would have been beating

themself up all the time instead of really resting and letting their

body recover.

Add to the fact that if we hadn't had a healthy mental upbringing we

would also be taking on board all the viewpoints of those around us

trying their best to make us feel guilty for not doing all the extra

duties we had taken on. Add all these facts in and one is living

under massive stress far more than our bodies are designed to cope

with.

Pam

December 6, 2005

Here's my opinion on this...

There are good stressors and bad stressors- internal stressors and

external stressors, just like there is good food and bad food, good

habits and bad habits... etc.. one thing is always opposed by another

( i.e. progesterone opposes estrogen), pathogens are opposed by our

immune systems - somethings are under your control and some things

aren't.

Generally, trying to keep things in balance seems to be the key-

whether you're talking about your check book or your body or the

environment - or world peace. It's inherent to life itself. I

suppose you could say LIFE itself a major stress.. as it leads the

organism into death... and it's more of a stress to some people than

others.. i.e. us in the USA as opposed to someone in Rawanda.

Perspective is important.

is in his early 20's and is lucky he's learning so young what's

under his control and what's not - he's learning he can make choices

that will lessen what he learns is bad stress for him.. that's a good

thing, as opposed to me- who stayed in a bad marriage for 10 years

before I realized I COULD make some choices to lessen my stress.

He has also taken some resonsibility for educating himself about

his illness (which I think we all have to some degree or another).

And this is a good thing too. Education balances ignorance.

We (on these lists) are all fairly well educated, living in decent

housing- have some people who probably love us - and are not starving

or racked by Malaria, and have water and electricity 24/7... so I

would say our life's stresses are less than a 3rd world African - and

our life-spans bear that out.

So. (Still wondering just what my opinion is ? :-)

Yes- I agree, the degree of stress in ones life is very important,

and depending on just what and how much stress there is can cause a

problem or exacerbate an already exisiting problem or it may be a

greater or lesser component of a problem.

And Yes I also totally agree that they way the word (stress) is used

by the Medical Profession when they can't find an organic or

mechanical reason for a medical problem is infurriating.

That's my 2 cents after living over 50 years in this life.

Barb

PAM WROTE: