The role of Exclusionary Evidence

[Guest guest]

I am appalled to see the consistent implication of formerly

benign " stresses and stressors " presented as critical factors of

etiology.

If it didn't cause CFS before - it lacks the capacity to do so NOW

unless something changed.

The association by CFSers of all the various triggers that preceded

their final descent into illness has reached such a ridiculous stage

that I have heard people claim that " antibiotics caused CFS " and " an

accident caused CFS " .

Jodi Basset even reports that one person is claiming that her

illness started after exposure to loud noise, and thus " Noise caused

CFS " .

Why is it so difficult to see that these are " cars that just

happened to be on the bridge when it collapsed " .

Yes the bridge collapsed when the truck drove over it.

Does that mean the " Trucks cause bridges to collapse " ?

Yes I am aware that the bridge didn't drop until the final insult

overburdened it - but bear in mind that the bridge was built to

support these loads and has a long history of doing so.

The bridge would not have collapsed under any such customary burden

if its strength had not been compromised.

THAT is the cause - not the usual and normal burden.

When someone proposes that avoidance of an emotion or an exertion

could have prevented this illness, what recourse does the doctor

have other than to propose that these activities should be avoided

as precipitators of chronic illness?

Exercise?

Prescription drugs?

Emotional responses?

You've got to be kidding!

-

[Guest guest]

>

> I am appalled to see the consistent implication of formerly

> benign " stresses and stressors " presented as critical factors

of

> etiology.

> If it didn't cause CFS before - it lacks the capacity to do so NOW

> unless something changed.

,

You answered your own question in the statement above.

Chronic, long-term stressors are considered FACTORS, just a

piece of the puzzle when it comes to CFS. I don't think anyone

here has said stress alone CAUSED my CFS.

Stress, especially unremitting, long-term stress over months or

years, definitely suppresses the immune system. To deny that

fact surely is " ridiculous " .

Respectfully,

Dan

> The association by CFSers of all the various triggers that

preceded

> their final descent into illness has reached such a ridiculous

stage

> that I have heard people claim that " antibiotics caused CFS "

and " an

> accident caused CFS " .

> Jodi Basset even reports that one person is claiming that her

> illness started after exposure to loud noise, and thus " Noise

caused

> CFS " .

>

> Why is it so difficult to see that these are " cars that just

> happened to be on the bridge when it collapsed " .

> Yes the bridge collapsed when the truck drove over it.

> Does that mean the " Trucks cause bridges to collapse " ?

>

> Yes I am aware that the bridge didn't drop until the final insult

> overburdened it - but bear in mind that the bridge was built to

> support these loads and has a long history of doing so.

> The bridge would not have collapsed under any such

customary burden

> if its strength had not been compromised.

> THAT is the cause - not the usual and normal burden.

>

> When someone proposes that avoidance of an emotion or an

exertion

> could have prevented this illness, what recourse does the

doctor

> have other than to propose that these activities should be

avoided

> as precipitators of chronic illness?

> Exercise?

> Prescription drugs?

> Emotional responses?

>

> You've got to be kidding!

> -

[Guest guest]

> ,

>

> You answered your own question in the statement above.

> Chronic, long-term stressors are considered FACTORS, just a

> piece of the puzzle when it comes to CFS. I don't think anyone

> here has said stress alone CAUSED my CFS.

>

> Stress, especially unremitting, long-term stress over months or

> years, definitely suppresses the immune system. To deny that

> fact surely is " ridiculous " .

>

> Respectfully,

>

> Dan

What stress?

You mean living in that horrific hell hole Incline Village?

I think most of us rather liked it up there and are pretty satisfied

that there was no finer place on Earth.

I didn't see many unremitting, long-term stressors lurking around

there and they didn't appear to be any kind of a factor at all.

Straus said that the construct of CFS was based on patients

impressions. I can see now where these ideas are from and I guess

I'll probably have to apologize to him - apparently many CFSers DO

believe this.

I suspect that as long as CFSers present their illness as being self

induced from emotional overresponses and an inability to PACE

themselves physically, doctors will view this illness as such and

treat CFSers accordingly.

-

[Guest guest]

I like your analogy. Make this a wooden bridge, and add termites and

birds that eat the termites. That is closer to our situation. We have

bugs ready at any time to eat our bodies. We have immune functions (the

birds) that eat the bugs. Stress (lots of noisy traffic on the bridge)

or other factors may scare away the birds (lower immunity). If the

birds stay away too long the termites start eating into the bridge.

Once the termites are deep, the birds can not hope to get them (Borrelia

and CWD organisms that reside in the cells.). Then one day, for no

apparent reason, a heavy truck rolls over the bridge, and the

termite-infested bridge collapses. I think that is closer to the truth

for CFS. The fact that someone thinks they were well before sudden

onset of illness does not make it true.

Stress may be a critical factor for some PWC. Such as those with poor

stress-managing genetics. People with Pyroluria, for example, a genetic

illness, have a kind of OCD in the adrenal system, they can not turn off

the fight-flight response very easily once it is triggered (anger,

anxiety, etc). They are more prone to all kinds of illnesses, and often

have ADD and related syndromes, which gives them trouble with

self-regulation in general. I don't think anyone has measured CFIDS

people for the incidence of these types of conditions, but that would be

an interesting study.

SPAM-LOW: The role of Exclusionary Evidence

I am appalled to see the consistent implication of formerly

benign " stresses and stressors " presented as critical factors of

etiology.

If it didn't cause CFS before - it lacks the capacity to do so NOW

unless something changed.

The association by CFSers of all the various triggers that preceded

their final descent into illness has reached such a ridiculous stage

that I have heard people claim that " antibiotics caused CFS " and " an

accident caused CFS " .

Jodi Basset even reports that one person is claiming that her

illness started after exposure to loud noise, and thus " Noise caused

CFS " .

Why is it so difficult to see that these are " cars that just

happened to be on the bridge when it collapsed " .

Yes the bridge collapsed when the truck drove over it.

Does that mean the " Trucks cause bridges to collapse " ?

Yes I am aware that the bridge didn't drop until the final insult

overburdened it - but bear in mind that the bridge was built to

support these loads and has a long history of doing so.

The bridge would not have collapsed under any such customary burden

if its strength had not been compromised.

THAT is the cause - not the usual and normal burden.

When someone proposes that avoidance of an emotion or an exertion

could have prevented this illness, what recourse does the doctor

have other than to propose that these activities should be avoided

as precipitators of chronic illness?

Exercise?

Prescription drugs?

Emotional responses?

You've got to be kidding!

-

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

_____

[Guest guest]

> ,

>

> You answered your own question in the statement above.

> Chronic, long-term stressors are considered FACTORS, just a

> piece of the puzzle when it comes to CFS. I don't think anyone

> here has said stress alone CAUSED my CFS.

>

> Stress, especially unremitting, long-term stress over months or

> years, definitely suppresses the immune system. To deny that

> fact surely is " ridiculous " .

>

> Respectfully,

>

> Dan

Tammy's reply:

Thank you Dan..............you took the words right out of my

mouth. LIke you said.........noone has claimed that stress was

the " cause " ..............but it does as you say suppress the immune

system which can allow other things to come into play. It is not

rocket science to know that stress suppresses the immune system. I

agree with your post wholeheartedly.

Tammy

>

>

>

>

>

> > The association by CFSers of all the various triggers that

> preceded

> > their final descent into illness has reached such a ridiculous

> stage

> > that I have heard people claim that " antibiotics caused CFS "

> and " an

> > accident caused CFS " .

> > Jodi Basset even reports that one person is claiming that her

> > illness started after exposure to loud noise, and thus " Noise

> caused

> > CFS " .

> >

> > Why is it so difficult to see that these are " cars that just

> > happened to be on the bridge when it collapsed " .

> > Yes the bridge collapsed when the truck drove over it.

> > Does that mean the " Trucks cause bridges to collapse " ?

> >

> > Yes I am aware that the bridge didn't drop until the final

insult

> > overburdened it - but bear in mind that the bridge was built to

> > support these loads and has a long history of doing so.

> > The bridge would not have collapsed under any such

> customary burden

> > if its strength had not been compromised.

> > THAT is the cause - not the usual and normal burden.

> >

> > When someone proposes that avoidance of an emotion or an

> exertion

> > could have prevented this illness, what recourse does the

> doctor

> > have other than to propose that these activities should be

> avoided

> > as precipitators of chronic illness?

> > Exercise?

> > Prescription drugs?

> > Emotional responses?

> >

> > You've got to be kidding!

> > -

[Guest guest]

> > ,

> > Stress, especially unremitting, long-term stress over months or

> > years, definitely suppresses the immune system. To deny that

> > fact surely is " ridiculous " .

> > Dan

>

> Tammy's reply:

> Thank you Dan..............you took the words right out of my

> mouth. LIke you said.........noone has claimed that stress was

> the " cause " ..............but it does as you say suppress the

immune system which can allow other things to come into play. It is

not rocket science to know that stress suppresses the immune

system. I

> agree with your post wholeheartedly.

> Tammy

Many have claimed that stress is the cause.

The role of exclusionary evidence is to point out that stress has no

history of causing this illness and that some people who succumbed

to CFS were at the happiest, most stress free period in their lives.

Factors of stress demonstrate no capacity to cause this illness and

reduction results in no cures.

Professor Wessely cannot persist in a vacuum. Only the continued

support of stress as a significant factor allows psychologizer view

to be promoted and considered therapeutically relevant.

When Professor Wessely is gone, there are many others ready to move

into the niche that is created for them by CFSers who support and

promote the importance of maladaptive behaviors in the creation and

perpetuation of this illness.

-

[Guest guest]

,

With all due respect, you're taking one " outbreak " , and your own

experience, and relating that to everyone else's. Obviously

long-term extreme stress wasn't a factor in your case, but that

doesn't negate that fact that it may have been in many other

cases.

As for pacing oneself, again, that is just PART of recovering from

this -- or ANY -- illness. If one has a raging sinus infection, what

is part of the advice a doctor gives the patient? REST, pace

yourself, don't overdo it, etc..

It's often PART of the picture -- but not THE cause or causes.

Respectfully,

Dan

>

>

> > ,

> >

> > You answered your own question in the statement above.

> > Chronic, long-term stressors are considered FACTORS, just

a

> > piece of the puzzle when it comes to CFS. I don't think

anyone

> > here has said stress alone CAUSED my CFS.

> >

> > Stress, especially unremitting, long-term stress over months

or

> > years, definitely suppresses the immune system. To deny

that

> > fact surely is " ridiculous " .

> >

> > Respectfully,

> >

> > Dan

>

>

> What stress?

> You mean living in that horrific hell hole Incline Village?

> I think most of us rather liked it up there and are pretty satisfied

> that there was no finer place on Earth.

> I didn't see many unremitting, long-term stressors lurking

around

> there and they didn't appear to be any kind of a factor at all.

>

> Straus said that the construct of CFS was based on

patients

> impressions. I can see now where these ideas are from and I

guess

> I'll probably have to apologize to him - apparently many CFSers

DO

> believe this.

> I suspect that as long as CFSers present their illness as being

self

> induced from emotional overresponses and an inability to

PACE

> themselves physically, doctors will view this illness as such

and

> treat CFSers accordingly.

> -

[Guest guest]

,

I think you are using a very narrow definition of stress. Stress is a

general term, or I could say 'adrenal stress' as Ken suggested. Yes,

there is 'adrenal stress' and also 'behavioral stress.' To me they both

are in the 'class' of stress. But for your sake I will use now 'adrenal

stress' for an example. A biowar bug produces adrenal stress, a

physical accident or injury produces adrenal stress, a chronic infection

produces adrenal stress, and cancer produces adrenal stress. Some of

these stresses may be invisible until enough damage is done to the body

that there is a system failure (like the bridge example). But there are

more visible stress examples as well - over-exercising produces adrenal

stress. Also, an overachiever lifestyle produces adrenal stress, so

even 'stress' in the modern behavioral sense produces 'adrenal stress.'

So adrenal stress may build up with or without our knowledge. Some

people seem aware of this and others do not.

Also, I respectfully disagree with the idea that there is no research

that backs this thread. There have been thousands of studies that

connect various types of adrenal and behavioral stressors with various

diseases, often involving some sort of fatigue syndrome. Much of this

started with the concept of General Adaptive Syndrome (GAS), with Dr.

Hans Seyle as the originator of the concept 80 years ago. Seyle

discovered early in his career as a biochemist that he could produce the

SAME diseases in rats with many DIVERSE types of stressors. He

discovered this effect accidentally, while searching for a new hormone.

He found when he injected hormones the rats got a disease. But when he

used toxin injections they got the same diseases. Eventually he figured

out that all the injections were causing adrenal exhaustion from stress.

This led to the discovery of a 3-stage adaptation failure syndrome,

which CLOSELY parallels the CFS model of Cheney. Seyle and others

following his line of research eventually proved through thousands of

studies that prolonged chronic stress of any type, biological, or other,

often leads to GAS (a form of CFS essentially, leading to eventual

disease). Here is a good link with the story of this discovery:

http://www.brainconnection.com/topics/printindex.php3?main=fa/selye

(Summary of Hans Seyle's story)

I don't think you can just dismiss all this research just because a few

fringe therapists are over-extending the theory and trying to say there

are no co-infections. They are clearly wrong. But to throw out this

entire careful explanation that is proven would also be wrong. There

will always be fools and detractors on the fringes, but the truth of

this condition is probably somewhere in the middle. I tend to take this

GAS research very seriously.

Dr. Teitelbaum strongly believes in this concept and references Selye's

work. I'm sure Cheney is also aware of this and would agree that stress

of ALL KINDS is involved in CFIDS.

I think there is a lot of evidence that we have a complicated version of

GAS. Probably the relevant difference between us and the rats in

Seyle's experiments is the specific stressors involved, we have

different toxins and bugs and other stressors today.

Here are more links about GAS, and also GAS and CFIDS.

http://www.icnr.com/articles/thenatureofstress.html (A technical but

good paper by Seyle)

http://www.holistichealthtopics.com/HMG/cfs.html (GAS and CFIDS, a

holistic view with co-infections)

Also, there is a Teitlebaum paper that mentions GAS and CFS somewhere.

--Kurt

SPAM-LOW: Re: The role of Exclusionary

Evidence

> > ,

> > Stress, especially unremitting, long-term stress over months or

> > years, definitely suppresses the immune system. To deny that

> > fact surely is " ridiculous " .

> > Dan

>

> Tammy's reply:

> Thank you Dan..............you took the words right out of my

> mouth. LIke you said.........noone has claimed that stress was

> the " cause " ..............but it does as you say suppress the

immune system which can allow other things to come into play. It is

not rocket science to know that stress suppresses the immune

system. I

> agree with your post wholeheartedly.

> Tammy

Many have claimed that stress is the cause.

The role of exclusionary evidence is to point out that stress has no

history of causing this illness and that some people who succumbed

to CFS were at the happiest, most stress free period in their lives.

Factors of stress demonstrate no capacity to cause this illness and

reduction results in no cures.

Professor Wessely cannot persist in a vacuum. Only the continued

support of stress as a significant factor allows psychologizer view

to be promoted and considered therapeutically relevant.

When Professor Wessely is gone, there are many others ready to move

into the niche that is created for them by CFSers who support and

promote the importance of maladaptive behaviors in the creation and

perpetuation of this illness.

-

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

_____

[Guest guest]

Dear !

" Many have claimed that stress is the cause.

The role of exclusionary evidence is to point out that stress has no

history of causing this illness and that some people who succumbed

to CFS were at the happiest, most stress free period in their lives. "

Stress, or what we see as stress (that always depends on our ability

to cope with things) is not healthy for us. It is bad for the immune

system, that is a fact.

Why somebody became ill will be different from person to person, you

will not be able to find " THE CAUSE " , though I believe that the

mechanism in all of us may be the same. So I think it is pretty well

possible that for one person it was stress, for the other not.

To me CFS is like any other chronic disease. Why somebody came down

with cancer or MS remains unclear, stress is discussed in both

disease. But none will doubt that these are very serious conditions. A

fortnight ago I saw someone talking on TV about his Parkinson, telling

that stress is really bad for him. Stress is discussed anywhere.

Wessely will never stop talking about stress, I am sure of that. This

has nothing to do with us, rather with his reputation.

BW

[Guest guest]

I understand where is coming from and the reasons he has given

for not overplaying the roles of stress in ME/CFS.

Living in the UK I am painfully aware of such how such an emphasis

influences attitudes, hence only CBT and GET are to be offered to

PWME/CFS. If this is what ME/CFSers are saying themselves then there

is no need for our governments to spend money on research and

treatments since we can be taught how to deal, and live, with

everyday emotional stressors; and/or exercised out of our

deconditioning. The psychologisers here will sometimes talk about

patients getting stuck in the in the flight/fright mode, but this too

can be fixed with CBT and GET.

I lived in a village when I became ill; no stress in the terms of how

it is often used in debates like this that could be attributed to

lowering my immune system. I know what may have contributed to my

being so severely affected, I am aware also aware this factor may

apply to some others but by no means everyone. I am also aware,

having known others who lived in that village and became ill, that it

could have just happened anyway.

There were many cases of a very neurological form of ME/CFS in this

UK village, it would come in waves as against as an epidemic as in

Incline Village. At a time when few young children were deemed to

have this illness, there were a significant number of cases in

children under the age of ten. The possibility of borreliosis being a

part of the puzzle cannot be dismissed since the village was right

next to forestry land - lots of deer, mice coming into our homes,

many of us spent considerable amounts of time with other animals too.

The majority of people who resided in this village enjoyed an outdoor

life and rural environment; that's why we chose to live and raise our

children there.

As in Incline Village there were no obvious indications of long-term

stress preceding an acute onset, it seemed to hit a lot of otherwise

seemingly healthy people most of whom were coping with life's

challenges.

My second concern in discussions along these lines is the

categorising of personality types. People are deemed to be either A

or B types, introvert or extrovert, yet there are more people whose

personalities fall into the grey area in between than at either end

of the spectrum.

Cheers, Tansy

>

> I am appalled to see the consistent implication of formerly

> benign " stresses and stressors " presented as critical factors of

> etiology.

> If it didn't cause CFS before - it lacks the capacity to do so NOW

> unless something changed.

> The association by CFSers of all the various triggers that preceded

> their final descent into illness has reached such a ridiculous

stage

> that I have heard people claim that " antibiotics caused CFS "

and " an

> accident caused CFS " .

> Jodi Basset even reports that one person is claiming that her

> illness started after exposure to loud noise, and thus " Noise

caused

> CFS " .

>

> Why is it so difficult to see that these are " cars that just

> happened to be on the bridge when it collapsed " .

> Yes the bridge collapsed when the truck drove over it.

> Does that mean the " Trucks cause bridges to collapse " ?

>

> Yes I am aware that the bridge didn't drop until the final insult

> overburdened it - but bear in mind that the bridge was built to

> support these loads and has a long history of doing so.

> The bridge would not have collapsed under any such customary burden

> if its strength had not been compromised.

> THAT is the cause - not the usual and normal burden.

>

> When someone proposes that avoidance of an emotion or an exertion

> could have prevented this illness, what recourse does the doctor

> have other than to propose that these activities should be avoided

> as precipitators of chronic illness?

> Exercise?

> Prescription drugs?

> Emotional responses?

>

> You've got to be kidding!

> -

[Guest guest]

Hi All.

There is a debate going on on the CFS_Research list about why CFIDS

research isn't being funded. I think I know why. I believe that the

CDC early on in the epidemic decided that CFIDS was caused by stress

(Read Osler's Web for more details). They have held fast to this

belief in spite of all the evidence that has accumulated since then.

They have actively promoted this belief among the medical

profession. Why waste money on an imaginary disease when there are

so many " real " diseases to fight?

If you want CFIDS research to continue to receive the kind of funding

that it does now, if you want to have to travel across the country to

find a doctor who believes that you are physically ill, keep on

telling people that stress is a factor in your CFIDS.

Whatever you mean, what most people will hear and think is something

like this: " This person is under stress and is tired, just like me.

But I don't complain about it, I get up and go to work everyday

anyway and so should they. " Not everybody, but most people.

Yes stress lowers the effectiveness of our immune systems. But so

what? If some god awful germ doesn't come along to wreak havoc on

our bodies nothing bad happens. It's the germ that causes the

illness not stress.

Adrenal exhaustion can be treated much more effectively than CFIDS.

I wish my problem was adrenal exhaustion due to chronic stress. But

it's not, it's something much harder to treat and recover from.

Something that isn't understood yet (see paragraph 1).

The belief that stress is the cause of CFIDS is the biggest obstacle

we face to getting well. If you really want to return to a normal

life, fighting the stress theory of CFIDS should be a top priority.

It really is the reason there is no research funding and no doctors

who are willing to take you seriously.

Once we find out what is causing our bodies to malfunction so badly,

or just what the malfunions are (we are a long way from even that),

then we can study what role stress does or does not play in this

illness. Until then we have to encourqage the study of the physical

aspects of CFIDS above the psychological aspects or in 20 years we'll

be about where we are right now.

Tom

[Guest guest]

Hi Kurt.

You're right CFIDS is not a popular disease. That's because most

people and most doctors do not think that it is a disease at all.

Tom

[Guest guest]

Maybe this is true in some places, but not all. Things are changing.

Everyone I talk to knows people with CFS, FM, CFIDS, Lyme Disease, or

some auto-immune condition related to these complexes. They know the

people, they know it is real. They know these people go through

treatment after treatment and nothing works. It is not talked about a

lot in the media yet, but some awareness is growing. 45% of society now

has some form of a chronic health problem, such as an auto-immune

disease, cancer, diabetes, a heart problem, FM/CFS, etc. The doctors

earn their living from this, so they know the facts. I think some

doctors say CFIDS is not a disease simply because they don't have a

treatment for it. They are businessmen, after all. They want you to

describe symptoms of a disease that they can treat. Now, if there were

some effective drug treatment that all doctors could prescribe for

CFIDS, and that drug required a lot of repeat visit 'check-ups' and

repeat testing, and the treatment was endorsed (in the US at least) by

the AMA/FDA/CDC cartel, then you could be sure that ALL doctors would

'believe' in the disease.. And CFIDS would become popular overnight, we

would see TV ads (in the US) for the wonder-drugs with the usual

nauseating pharma disclaimers - basically 'this drug works well for

people who are not sick'.

--Kurt

SPAM-LOW: Re: The role of Exclusionary

Evidence

Hi Kurt.

You're right CFIDS is not a popular disease. That's because most

people and most doctors do not think that it is a disease at all.

Tom

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

_____

[Guest guest]

> ,

> With all due respect, you're taking one " outbreak " , and your own

> experience, and relating that to everyone else's. Obviously

> long-term extreme stress wasn't a factor in your case, but that

> doesn't negate that fact that it may have been in many other

> cases.

>

Uhh, not exactly.

Since I was in the CFS study group and used to refine the parameters

of the symptom set that came to be known as " CFS " , others are

comparing their experience to mine instead of me comparing my

experience to anyone else.

I agree that people have tried to degrade the illness down to a

fatiguing illness consisting of anything and everything and caused

by any combination of stress and stressors, but that doesn't

represent the concurrent complaints of the cohort that brought the

epidemic to public awareness.

Dr Cheney gave me a good lesson in exclusionary evidence.

When the illness was called CEBV, he knew that EBV didn't fit the

facts and found nineteen of us in the US who didn't have Epstein

Barr virus to rule it out. That's why he put me in the study group.

Yet even though Dr Cheney demonstrated that it was possible to have

CFS without EBV, people still argue about the role of EBV.

It's a nonissue and yet somehow people still can't get it through

their heads and continue to argue that because most people have

EBV, it must be a significant factor.

The extension of " Stress " to include anything and everything that

perturbs the immune system in any way means that " Good Nutrition "

and " Happiness " are " stressors " and could be implicated in any sort

of dysregulation. People who die a lingering death from being shot

or stabbed could be said to have succumbed to the stress of their

wounds. It makes the whole concept of " stress " meaningless and only

further confuses the semantic ability to define something

as " causative " .

But it allows psychologizers to say that any illness consists

of " stress " as a significant factor!

Using this Stressologizer logic, one might argue that since

Hangnails and Hemorrhoids cause pain, and therefore create " stress " ,

they must necessarily be a factor in the case of anyone who succumbs

to a stress induced illness. If one argues that CFS is the sum

total of all stresses and that relieving the immune system of any

part of that burden constitutes a treatment, then Manicures and

Preparation H could be called " effective treatments " if they reduce

any portion of the pain and associated " stress " .

While relieving stress is good for anybody, the lack of correlation

and consistent failure of any level of stress to cause CFS means

that it is a factor that has no more than an incidental role and

should not be implicated as a significant factor any more than one

would blame Hangnails or Hemorrhoids - painful though they may be.

-

[Guest guest]

Hi !

> I agree that people have tried to degrade the illness down to a

> fatiguing illness consisting of anything and everything and caused

> by any combination of stress and stressors, but that doesn't

> represent the concurrent complaints of the cohort that brought the

> epidemic to public awareness.

>

None says that CFS was just exhaustion or normal fatigue.

I imagine two people with diabetes, discuss about the cause for their

illness. One is sixty years old, very fat, has eaten Mc s and

lots of sugary foods the past 30 years. The other a young female,

healthy eater etc. They will be unable to find the same cause, except

that now the same thing is going wrong in their bodies.

Both have the same disease, maybe not the same subgroup, and

definitely not the same cause for their illness. Whereas in one case

one can blame the diet, there is no cause visible in the other.

Best wishes

[Guest guest]

> one can blame the diet, there is no cause visible in the other.

>

Look at the way a housewife, Polly Murray discovered Lyme Disease.

The doctors were diagnosing children in Lyme Connecticut with Juvenile

Rheumatoid Arthritis at a rate that defied statistical probability.

When she pointed this out to the doctors, they simply fell back on

their diagnosis and chose to ignore the abnormality that a the

illness " did not fit the facts " by staying within it's statistical box.

Polly Murray persisted despite the obstinance, denial and outright

hostility from doctors - but she was right - and her book " The

Widening Circle " is another addition to the long list of illnesses

that patients were forced to defend over the objections of doctor who

are apparently blinded by their training to rely solely on tests they

already possess, which doesn't allow for anything " new " .

Dr Cheney and Dr saw the same thing.

There was no identified pathogen, stress or stressor that has the

capacity to create an illness anything like this in a group setting.

It didn't fit the facts and they asked for help.

The rest is history.

A history that has been repeated over and over, yet we still don't

learn from it.

-

[Guest guest]

Yes, good point that if the infection is gone the toxins could persist

in detox-compromised people (genetic liver problems?). I think the

Shoemaker protocol could help that. Have you explored this approach?

Although some say Bowen is not precise for the specific strain, they

always can culture out Borrelia Burgdorferi from their positive findings

so I tend to trust that test. But of course you must have the antigen

to get a positive.

I have wondered about this explanation (Borreliosis for Incline Village)

because I know several people with Lyme Disease from that area, I know

there is a long-standing problem in that general area with tick-borne

infections. RM Spotted fever, for example. Did some of the Incline

Village outbreak people have joint pain along with the fatigue and other

symptoms? Or rashes?

--Kurt

SPAM-LOW: SPAM-LOW: Re: The role of

Exclusionary Evidence

>

>

> Just a thought - was Borrelia, or any other spirochete tested for

> exclusion with this population?

>

> --Kurt

Yes, but since then we've learned that the testing was unreliable and

is meaningless and doesn't actually rule out Borreliosis.

We COULD do Bowen or IGENEX but there is a complicating factor that I

already noted in the old messages.

Recirculating unmetabolized toxins can create illness with or without

the presence of any bacteria whatsoever.

-

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

_____

[Guest guest]

While your theory may have some validity, Osler's Web was

written ten years ago. I think the reasons CFIDS doesn't get

decent research funding are number one -- the stupid name,

and two, the probability that there are hundreds of combinations

of causes, and number three, the connection between the

chemicals our government allows to be used in food and the

environment that may be a big part of our immune dysfunction. If

they were clearly implicated, it would be ligitation city.

" Yes stress lowers the effectiveness of our immune systems.

But so

what? If some god awful germ doesn't come along to wreak

havoc on

our bodies nothing bad happens. It's the germ that causes the

illness not stress. "

I disagree on both counts. EVERYONE comes into contact with

these germs or whatever, and a lot of people have stress to

some degree in their lives. It's our IMMUNE DYSFUNCTION that

makes us and keeps us sick, and added stress, which we feel

more than others, doesn't help.

Just my two cents.

d.

>

> Hi All.

>

> There is a debate going on on the CFS_Research list about

why CFIDS

> research isn't being funded. I think I know why. I believe that

the

> CDC early on in the epidemic decided that CFIDS was caused

by stress

> (Read Osler's Web for more details). They have held fast to

this

> belief in spite of all the evidence that has accumulated since

then.

> They have actively promoted this belief among the medical

> profession. Why waste money on an imaginary disease when

there are

> so many " real " diseases to fight?

>

> If you want CFIDS research to continue to receive the kind of

funding

> that it does now, if you want to have to travel across the country

to

> find a doctor who believes that you are physically ill, keep on

> telling people that stress is a factor in your CFIDS.

>

> Whatever you mean, what most people will hear and think is

something

> like this: " This person is under stress and is tired, just like me.

> But I don't complain about it, I get up and go to work everyday

> anyway and so should they. " Not everybody, but most people.

>

> Yes stress lowers the effectiveness of our immune systems.

But so

> what? If some god awful germ doesn't come along to wreak

havoc on

> our bodies nothing bad happens. It's the germ that causes the

> illness not stress.

>

> Adrenal exhaustion can be treated much more effectively than

CFIDS.

> I wish my problem was adrenal exhaustion due to chronic

stress. But

> it's not, it's something much harder to treat and recover from.

> Something that isn't understood yet (see paragraph 1).

>

> The belief that stress is the cause of CFIDS is the biggest

obstacle

> we face to getting well. If you really want to return to a normal

> life, fighting the stress theory of CFIDS should be a top priority.

> It really is the reason there is no research funding and no

doctors

> who are willing to take you seriously.

>

> Once we find out what is causing our bodies to malfunction so

badly,

> or just what the malfunions are (we are a long way from even

that),

> then we can study what role stress does or does not play in

this

> illness. Until then we have to encourqage the study of the

physical

> aspects of CFIDS above the psychological aspects or in 20

years we'll

> be about where we are right now.

>

> Tom

[Guest guest]

There are examples of funding given for diseases with all of your three

problems. Stupid names, well, most rare diseases have stupid names.

Unknown cause, well, that is the primary REASON to fund research for

many weird diseases, to try and figure out the cause. Possible

implications to business and government regulation, well, think about

the 'downwinders' and nuclear fallout illness, that did get funding

eventually, or some of the toxin problems uncovered in the 60s, or GWI

which has had big funding, those all imply litigation city but still

were funded. The agencies are not all that evil, they are just

political. And politics is about popularity rather than 'truth and

justice'.

I still maintain that it is the unpopularity of the disease that is

blocking the funding. CFIDS is just not a hot topic, it is not cool.

There is no political pressure to fund our disease. I welcome anyone to

prove me wrong. show me how CFIDS is popular and a hot topic. (grin)

However, on your second point, I must agree this is a good way to look

at it. If we did not have the high toxin load (from modern food

industry etc), then maybe we would not get sick. But really, ANY of

these things can compromise the immune system - toxins, stressors of all

kinds, and bugs. Maybe the real problem is to find out which of these

is involved in each individual case, maybe it varies. There are big

problems on this planet in all three categories right now, very bad

toxin exposures, very bad bugs, and very bad chronic stressors of all

types. Or maybe it is some other factor we have not even considered,

maybe none of the above. There is a lot of undiscovered territory here

still.

--Kurt

SPAM-LOW: Re: The role of Exclusionary

Evidence

While your theory may have some validity, Osler's Web was

written ten years ago. I think the reasons CFIDS doesn't get

decent research funding are number one -- the stupid name,

and two, the probability that there are hundreds of combinations

of causes, and number three, the connection between the

chemicals our government allows to be used in food and the

environment that may be a big part of our immune dysfunction. If

they were clearly implicated, it would be ligitation city.

" Yes stress lowers the effectiveness of our immune systems.

But so

what? If some god awful germ doesn't come along to wreak

havoc on

our bodies nothing bad happens. It's the germ that causes the

illness not stress. "

I disagree on both counts. EVERYONE comes into contact with

these germs or whatever, and a lot of people have stress to

some degree in their lives. It's our IMMUNE DYSFUNCTION that

makes us and keeps us sick, and added stress, which we feel

more than others, doesn't help.

Just my two cents.

d.

>

> Hi All.

>

> There is a debate going on on the CFS_Research list about

why CFIDS

> research isn't being funded. I think I know why. I believe that

the

> CDC early on in the epidemic decided that CFIDS was caused

by stress

> (Read Osler's Web for more details). They have held fast to

this

> belief in spite of all the evidence that has accumulated since

then.

> They have actively promoted this belief among the medical

> profession. Why waste money on an imaginary disease when

there are

> so many " real " diseases to fight?

>

> If you want CFIDS research to continue to receive the kind of

funding

> that it does now, if you want to have to travel across the country

to

> find a doctor who believes that you are physically ill, keep on

> telling people that stress is a factor in your CFIDS.

>

> Whatever you mean, what most people will hear and think is

something

> like this: " This person is under stress and is tired, just like me.

> But I don't complain about it, I get up and go to work everyday

> anyway and so should they. " Not everybody, but most people.

>

> Yes stress lowers the effectiveness of our immune systems.

But so

> what? If some god awful germ doesn't come along to wreak

havoc on

> our bodies nothing bad happens. It's the germ that causes the

> illness not stress.

>

> Adrenal exhaustion can be treated much more effectively than

CFIDS.

> I wish my problem was adrenal exhaustion due to chronic

stress. But

> it's not, it's something much harder to treat and recover from.

> Something that isn't understood yet (see paragraph 1).

>

> The belief that stress is the cause of CFIDS is the biggest

obstacle

> we face to getting well. If you really want to return to a normal

> life, fighting the stress theory of CFIDS should be a top priority.

> It really is the reason there is no research funding and no

doctors

> who are willing to take you seriously.

>

> Once we find out what is causing our bodies to malfunction so

badly,

> or just what the malfunions are (we are a long way from even

that),

> then we can study what role stress does or does not play in

this

> illness. Until then we have to encourqage the study of the

physical

> aspects of CFIDS above the psychological aspects or in 20

years we'll

> be about where we are right now.

>

> Tom

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

_____

[Guest guest]

Kurt or anyone-

Do we really know of anyone who was diagnosed w/ 'CFS' who was

then free of all stress for 2-3 years or more? If they were

married, they had marital obligations. If they were single, they

were on their own. The only person I can think of who was dx'd

w/ CFS and was married and didn't have financial worries was Ken L.,

and he is other recovered or doing much better. I don't want to

speak for Ken, he is just the least stressed PWC I have heard of.

I am sure his description of his stress level is different than

what I belieive it to be. Regards,

Mike C.

> ,

>

> I don't think you can just dismiss all this research just because

a few

> fringe therapists are over-extending the theory and trying to say

there

> are no co-infections. They are clearly wrong. But to throw out

this

> entire careful explanation that is proven would also be wrong.

There

> will always be fools and detractors on the fringes, but the truth

of

> this condition is probably somewhere in the middle. I tend to take

this

> GAS research very seriously.

>

> Dr. Teitelbaum strongly believes in this concept and references

Selye's

> work. I'm sure Cheney is also aware of this and would agree that

stress

> of ALL KINDS is involved in CFIDS.

>

> I think there is a lot of evidence that we have a complicated

version of

> GAS. Probably the relevant difference between us and the rats in

> Seyle's experiments is the specific stressors involved, we have

> different toxins and bugs and other stressors today.

<<<<snip<<<<<

[Guest guest]

In the book 'Chronic Fatigue Unmasked' there are many examples given of

people who learned to and were able to significantly recover after

adjusting their levels of stress, and Posenecker correlates the stress

reduction with the ability to recover from CFS. However, I believe he

was working with people who had less virulent co-infections, where

stress really did play more of a role (mostly in the 70s-80s).

Regardless of the cause, CFS clearly involves a problem with the HPA

axis, and that is our stress control center! You just can't get around

the importance of stress management, and stress coping strategies in the

treatment of CFS.

SPAM-LOW: Re: The role of Exclusionary

Evidence

Kurt or anyone-

Do we really know of anyone who was diagnosed w/ 'CFS' who was

then free of all stress for 2-3 years or more? If they were

married, they had marital obligations. If they were single, they

were on their own. The only person I can think of who was dx'd

w/ CFS and was married and didn't have financial worries was Ken L.,

and he is other recovered or doing much better. I don't want to

speak for Ken, he is just the least stressed PWC I have heard of.

I am sure his description of his stress level is different than

what I belieive it to be. Regards,

Mike C.

> ,

>

> I don't think you can just dismiss all this research just because

a few

> fringe therapists are over-extending the theory and trying to say

there

> are no co-infections. They are clearly wrong. But to throw out

this

> entire careful explanation that is proven would also be wrong.

There

> will always be fools and detractors on the fringes, but the truth

of

> this condition is probably somewhere in the middle. I tend to take

this

> GAS research very seriously.

>

> Dr. Teitelbaum strongly believes in this concept and references

Selye's

> work. I'm sure Cheney is also aware of this and would agree that

stress

> of ALL KINDS is involved in CFIDS.

>

> I think there is a lot of evidence that we have a complicated

version of

> GAS. Probably the relevant difference between us and the rats in

> Seyle's experiments is the specific stressors involved, we have

> different toxins and bugs and other stressors today.

<<<<snip<<<<<

This list is intended for patients to share personal experiences with

each other, not to give medical advice. If you are interested in any

treatment discussed here, please consult your doctor.

_____

[Guest guest]

d -

It is true that Osler's Web was written more than 10 years ago, but nothing

more definite has been found about CFS since then, due to lack of adequate

NIH research funding for this disease.

You list three reasons why NIH funding is so low, and I agree only with the

first one. The name, the name, the name, the trivializing, insulting and

degrading name Chronic Fatigue Syndrome..

I worked in biomedical research for 33 years, and know the NIH research

grant funding process very well. To receive adequate research grants, the

applicant's research topic must be judged important to finding new info

about fundamental biological processes that can be applied to a disease, or

a new therapy for a disease. In either case, the disease must be well

recognized, and have a scientific name.

Sorry folks, the silly name Chronic Fatigue Syndrome will get your research

grant application laughed out of the first screening.. Unless it is for a

trivial amount, such as less than $50,000, as a secondary research topic in

your lab. To be a main research topic in a university or drug industry lab,

the grant funding needs to be at least $1,000,000 per year. The grant has

to pay the Principal Investigator's salary and those of at least 6 other

people, such as technicians, grad students and postdoctoral fellows working

on the main lab theme.

Most people are amazed when they learn that university biomedical

researchers are not paid a dime by the university they work for, if we are

talking about big time, effective research institutions. Their salaries,

and

all their staff, and lab operating expenses, have to be paid from their

grant funding.. The university gives them a title and lots of other work to

do, such as teaching, but does not even give them a free room to work in, as

the university gets a big cut off the top of the grant..

And then there are many unknown pressures for CFS researchers, such as how

their peers and families react to the name Chronic Fatigue Syndrome.. " What

does your husband/wife (father, brother, son, daughter) do for a living? "

Reply - " He/she is a PhD in biomedical research " . " Hey, that is wonderful,

what disease does he research? " Reply - " Chronic Fatigue Syndrome " The

questioner then breaks out in a big horse laugh! I've had this happen to me

many times when I tell people I have Chronic Fatigue Syndrome, so sure would

not want to stake my career on its research, if I was a brilliant young

scientist.. Or even an old one..

Sometimes I fantize about a multibillionaire industrialist who has a 17 year

old child who is hit with sudden-onset CFS. He sets up a $10 billion CFS

research foundation and tries to hire the best scientists in the world to

develop a cure to save his child from an agonizing and 20% functional

lifetime with CFS. But strangely enough, no top scientists want to work,

for any amount of money, in the new CFS Research Foundation, due to the

professional ridicule they would suffer working on this trivial fatigue

disease, and tell him just that.

So, the multibillionaire industrialist, who knows the power of semantics,

rounds up some bagmen and packs $5 million in cash each into 20 big attaché

cases, to be delivered to top NIH and CDC officials, with the understanding

that another case of identical cash will be delivered to them if immediate

action is

taken to

change the name of Chronic Fatigue Syndrome to a valid and serious

scientific name, with none of the three present words in it.

And so an emergency meeting is called, and the disease name is changed in

two days. Immediately, applications pour into the new research foundation,

and 100 top scientists are hired and a 10-day oral drug, which is a complete

and permanent cure is developed within 18 months..

As our Texan friends have always said, any problem can be solved if you use

the right

terminology and throw enough money at it! Do that, and it just disappears!

Mort Caldwell

Biomedical Engineer

Age 64, CFS since 1994

Career ended by CFS in 1995

Now at about 20% functionality

Re: The role of Exclusionary Evidence

>

>

> While your theory may have some validity, Osler's Web was

> written ten years ago. I think the reasons CFIDS doesn't get

> decent research funding are number one -- the stupid name,

> and two, the probability that there are hundreds of combinations

> of causes, and number three, the connection between the

> chemicals our government allows to be used in food and the

> environment that may be a big part of our immune dysfunction. If

> they were clearly implicated, it would be ligitation city.

>

> " Yes stress lowers the effectiveness of our immune systems.

> But so

> what? If some god awful germ doesn't come along to wreak

> havoc on

> our bodies nothing bad happens. It's the germ that causes the

> illness not stress. "

>

> I disagree on both counts. EVERYONE comes into contact with

> these germs or whatever, and a lot of people have stress to

> some degree in their lives. It's our IMMUNE DYSFUNCTION that

> makes us and keeps us sick, and added stress, which we feel

> more than others, doesn't help.

>

> Just my two cents.

>

> d.

>

>

>

>

> >

> > Hi All.

> >

> > There is a debate going on on the CFS_Research list about

> why CFIDS

> > research isn't being funded. I think I know why. I believe that

> the

> > CDC early on in the epidemic decided that CFIDS was caused

> by stress

> > (Read Osler's Web for more details). They have held fast to

> this

> > belief in spite of all the evidence that has accumulated since

> then.

> > They have actively promoted this belief among the medical

> > profession. Why waste money on an imaginary disease when

> there are

> > so many " real " diseases to fight?

> >

> > If you want CFIDS research to continue to receive the kind of

> funding

> > that it does now, if you want to have to travel across the country

> to

> > find a doctor who believes that you are physically ill, keep on

> > telling people that stress is a factor in your CFIDS.

> >

> > Whatever you mean, what most people will hear and think is

> something

> > like this: " This person is under stress and is tired, just like me.

> > But I don't complain about it, I get up and go to work everyday

> > anyway and so should they. " Not everybody, but most people.

> >

> > Yes stress lowers the effectiveness of our immune systems.

> But so

> > what? If some god awful germ doesn't come along to wreak

> havoc on

> > our bodies nothing bad happens. It's the germ that causes the

> > illness not stress.

> >

> > Adrenal exhaustion can be treated much more effectively than

> CFIDS.

> > I wish my problem was adrenal exhaustion due to chronic

> stress. But

> > it's not, it's something much harder to treat and recover from.

> > Something that isn't understood yet (see paragraph 1).

> >

> > The belief that stress is the cause of CFIDS is the biggest

> obstacle

> > we face to getting well. If you really want to return to a normal

> > life, fighting the stress theory of CFIDS should be a top priority.

> > It really is the reason there is no research funding and no

> doctors

> > who are willing to take you seriously.

> >

> > Once we find out what is causing our bodies to malfunction so

> badly,

> > or just what the malfunions are (we are a long way from even

> that),

> > then we can study what role stress does or does not play in

> this

> > illness. Until then we have to encourqage the study of the

> physical

> > aspects of CFIDS above the psychological aspects or in 20

> years we'll

> > be about where we are right now.

> >

> > Tom

>

>

>

>

>

>

> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>

[Guest guest]

" CFS " is a lousy name for sure, but what excuse do they have for

ignoring the hundred or so other names?

Funny how ProMED epidemioloists can respond to things

like " Undiagnosed deaths " or " Undiagnosed Febrile Illness " and yet

remain somehow oblivious to this one - under all of its various

names.

I didn't think that ME was so bad but it seems to be taking quite

the hit in the UK.

Low NK Cell syndrome in Japan seemed like a reasonable thing to call

it, but ditto there too.

Interesting how the effects of bacteria and viral infections are now

called " stresses from bacteria or virus.. "

We used to call these things " infections " and the results " sickness "

but now I guess everything is just some type of " stress " .

We'll have to re write the history books how Hitler shoved people

into " Stress chambers " and the way the " Bubonic Stress " wiped out so

many people during the " StressPlague " .

-

[Guest guest]

Hi Mort,

Thanks for your extremely informative reply. The name really is

problem number one -- in so many areas, as you said. I never

really thought about it in terms of how it affects research funding

though.

I love your fantasy. I live in Seattle, the home of Bill Gates and

, and our local group has been trying to figure out a

way to approach them -- but I suppose we'd need to start a

non-profit first, before we could apply for a grant -- and our grant

would just be to help those with CFIDS meet emergency

expenses. Why do these billionaires and celebrities have all

these fundraisers, yet never seem to give much directly (with the

except of Bill and Gates)?

You said that nothing more definite has been found out about

CFS in the last 10 years -- I guess that's where we'll have to

agree to disagree. The ciguatera research, the hypercoagulation

studies, and more, have all been added to the " pot " in the last

4-5 years. And hopefully more that we aren't even aware of.

I thank you so much for your post, and hope tomorrow is a

" better " day for all of us..

d.

> > >

> > > Hi All.

> > >

> > > There is a debate going on on the CFS_Research list

about

> > why CFIDS

> > > research isn't being funded. I think I know why. I believe

that

> > the

> > > CDC early on in the epidemic decided that CFIDS was

caused

> > by stress

> > > (Read Osler's Web for more details). They have held fast

to

> > this

> > > belief in spite of all the evidence that has accumulated

since

> > then.

> > > They have actively promoted this belief among the medical

> > > profession. Why waste money on an imaginary disease

when

> > there are

> > > so many " real " diseases to fight?

> > >

> > > If you want CFIDS research to continue to receive the kind

of

> > funding

> > > that it does now, if you want to have to travel across the

country

> > to

> > > find a doctor who believes that you are physically ill, keep

on

> > > telling people that stress is a factor in your CFIDS.

> > >

> > > Whatever you mean, what most people will hear and think

is

> > something

> > > like this: " This person is under stress and is tired, just like

me.

> > > But I don't complain about it, I get up and go to work

everyday

> > > anyway and so should they. " Not everybody, but most

people.

> > >

> > > Yes stress lowers the effectiveness of our immune

systems.

> > But so

> > > what? If some god awful germ doesn't come along to

wreak

> > havoc on

> > > our bodies nothing bad happens. It's the germ that causes

the

> > > illness not stress.

> > >

> > > Adrenal exhaustion can be treated much more effectively

than

> > CFIDS.

> > > I wish my problem was adrenal exhaustion due to chronic

> > stress. But

> > > it's not, it's something much harder to treat and recover

from.

> > > Something that isn't understood yet (see paragraph 1).

> > >

> > > The belief that stress is the cause of CFIDS is the biggest

> > obstacle

> > > we face to getting well. If you really want to return to a

normal

> > > life, fighting the stress theory of CFIDS should be a top

priority.

> > > It really is the reason there is no research funding and no

> > doctors

> > > who are willing to take you seriously.

> > >

> > > Once we find out what is causing our bodies to malfunction

so

> > badly,

> > > or just what the malfunions are (we are a long way from

even

> > that),

> > > then we can study what role stress does or does not play in

> > this

> > > illness. Until then we have to encourqage the study of the

> > physical

> > > aspects of CFIDS above the psychological aspects or in 20

> > years we'll

> > > be about where we are right now.

> > >

> > > Tom

> >

> >

> >

> >

> >

> >

> > This list is intended for patients to share personal

experiences with each

> other, not to give medical advice. If you are interested in any

treatment

> discussed here, please consult your doctor.

> >

[Guest guest]

D,

I agree 120%. Every living being has stress. Without it there would be no

life. Some people are wired differently by birth (genetics), from

environment and nurture for their response to stress by whatever form it is

presented. Among them infection and illness are on the list. There is no

good scientific basis for measuring stress and stress response to the

business of ordinary living and exposures, social, environmental or

otherwise. As illness sets in, so does stress. Whether the stress is from

the illness or part of the factors that set one up for illness, the point is

you are now ill and a vicious cycle is more likely than not to perpetuate

this cycle. Worn out adrenals from burnout (extreme and prolonged

stress(es)) may cause one type of stress related illness or be a factor in

many illnesses. But there is always more happening here. There is the real

trigger and the situation in which the trigger is presented. Then the

trigger may precede the illness but the stressors trip the switch. This doe

not mean you were not already in a state of dis-ease but that you did not

have symptoms until something else happened in your body and your life.

I think. And this is just my opinion that a dead horse is being beaten to

death on this stress issue. No of the problems with CFIDS research and our

understanding of the dis-ease that it is lies in the way old and dis-proven

research is never disposed of. The old junk is just dug up and reused as if

it is gospel by whoever needs it for support or whoever is not knowledgeable

of the whole knowledge base out there. AND, no one is.

To try to match ones stress to some one else's is a waste of time. We do not

all respond to nor do our stressors come in matching elements that can be

compared as less not at this level in this type of forum.

This is what is so sad and prolongs findings cause and treatment and cures.

Since the whole world of living human beings has stress and some a lot worse

than anything we as PWC have had, and some a lot less but the entire

universal is not sick with CFS or any one stress related disorder, we must

look for and put energy in the triggers that bring this illness on in people

no matter what they stress situation is or has been.

Shalom, W

-----Original Message-----

Re: The role of Exclusionary Evidence

While your theory may have some validity, Osler's Web was

written ten years ago. I think the reasons CFIDS doesn't get

decent research funding are number one -- the stupid name,

and two, the probability that there are hundreds of combinations

of causes, and number three, the connection between the

chemicals our government allows to be used in food and the

environment that may be a big part of our immune dysfunction. If

they were clearly implicated, it would be ligitation city.

" Yes stress lowers the effectiveness of our immune systems.

But so

what? If some god awful germ doesn't come along to wreak

havoc on

our bodies nothing bad happens. It's the germ that causes the

illness not stress. "

I disagree on both counts. EVERYONE comes into contact with

these germs or whatever, and a lot of people have stress to

some degree in their lives. It's our IMMUNE DYSFUNCTION that

makes us and keeps us sick, and added stress, which we feel

more than others, doesn't help.

Just my two cents.

d.

>

> Hi All.

>

> There is a debate going on on the CFS_Research list about

why CFIDS

> research isn't being funded. I think I know why. I believe that

the

> CDC early on in the epidemic decided that CFIDS was caused

by stress

> (Read Osler's Web for more details). They have held fast to

this

> belief in spite of all the evidence that has accumulated since

then.

> They have actively promoted this belief among the medical

> profession. Why waste money on an imaginary disease when

there are

> so many " real " diseases to fight?

>

> If you want CFIDS research to continue to receive the kind of

funding

> that it does now, if you want to have to travel across the country

to

> find a doctor who believes that you are physically ill, keep on

> telling people that stress is a factor in your CFIDS.

>

> Whatever you mean, what most people will hear and think is

something

> like this: " This person is under stress and is tired, just like me.

> But I don't complain about it, I get up and go to work everyday

> anyway and so should they. " Not everybody, but most people.

>

> Yes stress lowers the effectiveness of our immune systems.

But so

> what? If some god awful germ doesn't come along to wreak

havoc on

> our bodies nothing bad happens. It's the germ that causes the

> illness not stress.

>

> Adrenal exhaustion can be treated much more effectively than

CFIDS.

> I wish my problem was adrenal exhaustion due to chronic

stress. But

> it's not, it's something much harder to treat and recover from.

> Something that isn't understood yet (see paragraph 1).

>

> The belief that stress is the cause of CFIDS is the biggest

obstacle

> we face to getting well. If you really want to return to a normal

> life, fighting the stress theory of CFIDS should be a top priority.

> It really is the reason there is no research funding and no

doctors

> who are willing to take you seriously.

>

> Once we find out what is causing our bodies to malfunction so

badly,

> or just what the malfunions are (we are a long way from even

that),

> then we can study what role stress does or does not play in

this

> illness. Until then we have to encourqage the study of the

physical

> aspects of CFIDS above the psychological aspects or in 20

years we'll

> be about where we are right now.

>

> Tom