Re: False attributions, and the right to comment.

[Guest guest]

LRight on Sara.

Re: Re: False attributions, and the right to

comment.

:

With all due respect, you're missing the point here.

You and keep talking about " psychological stress. " The rest of

us are talking about physiological stress -- a condition which

psychological stress has been well-proven to contribute to, but

hardly tells the whole story.

This is a huge part of the larger problem, in my estimation. I'm here

talking about what happened to me when I had the year from hell. And

you keep telling me I'm describing something that was all in my head.

This was not all in my head. The year I got sick began with me in a

100-hour-a-week job that had me sleeping under my desk for six hours

a night, for nights on end, for 10 weeks straight. I was living on

coffee on Chinese food. I did not bathe more than twice a week. I was

managing two other people, and five projects, and running my

equipment 24/7. And it was still more work than we could get done.

Then, the day that project ended, I got divorced. Anybody who doesn't

think that profound and sudden grief (I really had not seen this

coming) doesn't cause physical breakdowns hasn't lost someone they

loved dearly. I moved home to Mom, stopped eating entirely, and cried

for the next six weeks. I only slept when I resorted to Valium.

Then, I got another job that also required 100-hour weeks for the

next three months -- also while eating strange food and also sharing

quarters from people from over 60 countries, who were carrying who-

knows-what bugs. I walked 15 miles a day in that job. By the time it

was over, I was exhausted.

The week that job ended, I was rear-ended while parked out front of a

building in West LA. Five days later, not looking, I plowed the same

car into the back of another vehicle a few miles away. The car was

nearly totated. My neck didn't even fare that well, and hasn't been

the same since.

Still, another job was waiting, this one with a political campaign. I

was driving 1200 miles a week, sleeping on couches (with my bad

neck), and subsisting on rubber chicken. I was also falling apart

financially, so I couldn't afford to see doctors for the increasing

numbers of minor illnesses that kept cropping up. It was now

September; I'd been under constant stress since early February. My

body was starting to show the wear and tear.

In mid-October, I got a bladder infection that, within the space of

four hours, exploded into a kidney infection. Without insurance, I

couldn't afford to be hospitalized, so they sent me home with a

massive bottle of doxycyline (an antibiotic that makes me grotesquely

ill) and told me to stay off my feet for the next two weeks.

In late October, my beloved great-uncle died. I got up out of my sick

bed, wobbly but committed, and flew to Phoenix for the funeral.

I got back on my feet just in time for Election Day -- now seriously

weak, but at least strong enough to pack up a rental truck move once

more (this would be the fourth move in the past eight months) to the

Bay Area. That winter -- the winter of '84-85, when CFS was sweeping

California (Incline was hardly the whole story that year) -- was the

winter I finally collapsed.

Gee? You think my grueling work schedule, four moves, a divorce, a

death in the family, financial stress, months on end of bad food and

worse sleep, and two car accidents might have made me somewhat, ahem,

fragile?

What I am talking about here is NOT mere " psychological stress. " I'm

talking about being blown out emotionally, physically, financially,

and every other way a human being can be. That's what " allostatic

load " is: a prolonged state in which the body is sustaining low-grade

abuse on many fronts, to the point where it eventually ceases to

function well enough to avoid damage. (And it did damage me: by

February of that winter, my thyroid was in total free-fall, to the

point where my periods simply stopped for 10 months.)

As long as those of us who experienced the stress keep saying

" physiological stress " and people like you keep telling us we're

talking about something that was all in our heads, we will not be

having the same conversation.

And, in fact, talking to you is going to continue to feel a hell of a

lot like talking to all those other people who minimize and

disbelieve what we've experienced.

In short: You are doing it again. Please STOP.

Sara

On Sep 7, 2006, at 8:07 PM, Du Pre wrote:

> Hello,

> I think I would agree with on this issue regarding the fact that

> Myalgic Encephalomyelitis/CFS epidemics break out among a group of

> people

> because of infection or toxic chemical exposure. Some of those

> people may

> have a little more psychological stress that others; however, this

> stress idea

> did not deserve to become front and center issue with the newly

> coined disease name,

> Chronic Fatigue Syndrome.

> For example, here in the Sacramento area, there were three

> outbreaks of

> Myalgic Encephalomyelitis (I hate to use the coined term--CFS---of

> the CDC):

> 1. Mercy San Hospital---200 hospital staff & spreading to

> children of hospital

> staff

> and from there to the children's teachers

> 2. Rosedale Hospital in Roseville, California--

> 11 or more cases of ME diagnosed among staff on third-floor of

> hospital--

> Roseville is a town adjacent to Sacramento.

> 3. Elk Grove High School, a suburb of Sacramento--epidemic among

> teachers and

> students

>

> My point here is that groups of people came down with the

> disease due to

> viral or chemical assault, and excess psychological stress does not

> explain these

> epidemic

> outbreaks.

> For me personally, I handled stress quite well BEFORE getting

> the disease, Myalgic

> Encephalomyelitis,

> but of course a serious neuroimmune disease THEREAFTER makes one

> prone to all kinds of

> stressors.

> However, the CDC is trying to build up the case for a genetic

> susceptibility to

> stress from birth.

> This is just wrongheaded, as I said, because for the first 38 years

> of my life, I

> showed no

> particular susceptibility to stress. I handled stress quite well,

> thank you.

> And also I'm not a Type A personality.

> As one former park ranger in my support group says, there was only

> one Type A

> personality

> in the whole group of park rangers that came down with Myalgic

> Encephalomyelitis in

> the 90s.

> I do not need any doctor to use the words " fatigue " or " stress "

> in any medical

> appointment.

> Du Pre

> Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

> " By words the mind is winged. " Aristophanes

> Website for National Alliance for Myalgic Encephalomyelitis: http://

> www.name-us.org

>

>

>

>

>

[Guest guest]

, how many people were working at Mercy San Hospital, and

how many children were there--and what portion got sick? What portion

recovered? And to what extent?

Similarly with Rosedale Hospital (if on one floor, its likely an

environmental toxin)--how many on that floor got sick, and how many

worked there? Who recovered, when,a nd how?

Etc.

I mean, we know that one is more likely to get the common cold with

stress (either physical or mental). We know that the stress of

marathon running generates more Upper Respiratory Infections than

normal. We know that the stress of not sleeping enough causes more

illness. We know that emotional stress leads to exacerbations in

chronic illnesses.

Why should this be different?

Why is anyobdy even arguing over etiology? Weren't we supposed to be

looking at treatment solutions? No matter what, once you've got " ME "

you're stressed, so looking at ways to handle stress is important.

> 1. Mercy San Hospital---200 hospital staff & spreading to

children of hospital

> staff

> and from there to the children's teachers

> 2. Rosedale Hospital in Roseville, California--

> 11 or more cases of ME diagnosed among staff on third-floor of

hospital--

> Roseville is a town adjacent to Sacramento.

> 3. Elk Grove High School, a suburb of Sacramento--epidemic among

teachers and

> students

>

> My point here is that groups of people came down with the

disease due to

> viral or chemical assault, and excess psychological stress does not

explain these

> epidemic

> outbreaks.

> For me personally, I handled stress quite well BEFORE getting

the disease, Myalgic

> Encephalomyelitis,

> but of course a serious neuroimmune disease THEREAFTER makes one

prone to all kinds of

> stressors.

> However, the CDC is trying to build up the case for a genetic

susceptibility to

> stress from birth.

> This is just wrongheaded, as I said, because for the first 38 years

of my life, I

> showed no

> particular susceptibility to stress. I handled stress quite well,

thank you.

> And also I'm not a Type A personality.

> As one former park ranger in my support group says, there was only

one Type A

> personality

> in the whole group of park rangers that came down with Myalgic

Encephalomyelitis in

> the 90s.

> I do not need any doctor to use the words " fatigue " or " stress "

in any medical

> appointment.

> Du Pre

> Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

> " By words the mind is winged. " Aristophanes

> Website for National Alliance for Myalgic Encephalomyelitis:

http://www.name-us.org

>

>

>

>

>

[Guest guest]

Barry Marshall directly swallowed a bolus of bacteria, which is not

the way it happens in the natural world, by the way. You don't get

that large a bolus of h. pylori. In addition, if I recall correctly,

he got well quickly, while one of his colleagues took about 3 years to

get well.

There is individual variation. For instances, studies with allergic

kids show that they have aberrant cortisol responses to a stressor

even durng periods when they are not having allergies.

So, they don't even know they're 'stressed' and yet, their systems

have an underlying vulnerability/abnormality we can represent as

stress (i.e. the stress response).

> Barry Marshalls demonstration was by giving himself ulcers to

> prove his point. The correlation between stress and ulcers was

> strong only because the heightened inflammatory response from

> bacterial infection releases cytokines which lowers stress tolerance.

> It's not " either-or " , it's a matter of complete reversal of the

> cause for the association. They were completely wrong.

> Psychologizers can be proven completely wrong, yet they will still

> say they were right anyway.

> Thanks for proving my point.

> -

>

[Guest guest]

>

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

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

> symptoms and others progressed quickly.<<<<<

**That's true of many viruses.

**Some believe this to show that HIV virus alone is not the cause of AIDS.

Others are suspected to be co-factors

***It may also be true that early CFS researchers were correct..that there are

asymptomatic " carriers " ... some may be passing the disease.

Katrina

>

> >

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

> >

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

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

> >

> > -

> >

>

[Guest guest]

,

Thank you for this reminder of the ME/CFS Epidemics and reality check on

suspected cause. For that, I would take the word of ME Specialists across the

globe and several decades over anyone on this list.

There also was an ME Epidemic in 1965 in Galveston, Texas. This is when and

where I was the year I got a Mystery Illness, which cleared, and 3 months

later... " Mononucleosis and Hepatitis A " . I was hopitalized on clear liquids for

10 days and homebound/mostly bedridden for 6 weeks.

I have no idea what to make of that.

I recovered and had an active life for the next 20 years...until ME/CFS.

When I was in the Hospital, they took vials of blood every morning. Wonder what

they found?

Katrina

>

> Hello,

> I think I would agree with on this issue regarding the fact that

> Myalgic Encephalomyelitis/CFS epidemics break out among a group of people

> because of infection or toxic chemical exposure. Some of those people may

> have a little more psychological stress that others; however, this stress idea

> did not deserve to become front and center issue with the newly coined disease

name,

> Chronic Fatigue Syndrome.

> For example, here in the Sacramento area, there were three outbreaks of

> Myalgic Encephalomyelitis (I hate to use the coined term--CFS---of the CDC):

> 1. Mercy San Hospital---200 hospital staff & spreading to children of

hospital

> staff

> and from there to the children's teachers

> 2. Rosedale Hospital in Roseville, California--

> 11 or more cases of ME diagnosed among staff on third-floor of hospital--

> Roseville is a town adjacent to Sacramento.

> 3. Elk Grove High School, a suburb of Sacramento--epidemic among teachers and

> students

>

> My point here is that groups of people came down with the disease due to

> viral or chemical assault, and excess psychological stress does not explain

these

> epidemic

> outbreaks.

> For me personally, I handled stress quite well BEFORE getting the disease,

Myalgic

> Encephalomyelitis,

> but of course a serious neuroimmune disease THEREAFTER makes one prone to all

kinds of

> stressors.

> However, the CDC is trying to build up the case for a genetic

susceptibility to

> stress from birth.

> This is just wrongheaded, as I said, because for the first 38 years of my

life, I

> showed no

> particular susceptibility to stress. I handled stress quite well, thank you.

> And also I'm not a Type A personality.

> As one former park ranger in my support group says, there was only one Type A

> personality

> in the whole group of park rangers that came down with Myalgic

Encephalomyelitis in

> the 90s.

> I do not need any doctor to use the words " fatigue " or " stress " in any

medical

> appointment.

> Du Pre

> Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

> " By words the mind is winged. " Aristophanes

> Website for National Alliance for Myalgic Encephalomyelitis:

http://www.name-us.org

>

>

>

>

>

[Guest guest]

>>>>>You and keep talking about " psychological stress. " The rest of us are

talking about physiological stress -- a condition which psychological stress has

been well-proven to contribute to, but hardly tells the whole story<<<<<<

excuse me, " the rest of us " ????

This entire subject began because Rich posted his latest Hypothesis that women

with CFS were more EMOTIONALLY stressed prior to illness than men.

How is this post from the same as Doctors who don't believe you? Do you

mean don't believe that stress caused you to get ME/CFS?

No one has said that stress can not cause illness. No one said that your stress

did not make you sick....you have named a number of different conditions that

you think were caused by stress, emotions and diet.(and genes?). This may very

well be true. *No one here* told you that was all in your head.

The vehement objections here are to people saying that *ME/CFS* is caused by

stress and/or poor response to it. And that will never *stop* from " the rest of

us " ....patients, advocates and Physicians...all over the world.

The day it stops is the day we are dead. However, Ramsey's word still lives on,

so hopefully that will be the case.

If you end up in a CFS CBT Clinic for treatment, the responsibility for your

remaining sick will most definitely rest directly on the shoulders of your mind

and your behaviors, which you will also be told are the only things standing in

the way of your getting well.

Katrina

>

> > Hello,

> > I think I would agree with on this issue regarding the fact that

> > Myalgic Encephalomyelitis/CFS epidemics break out among a group of

> > people

> > because of infection or toxic chemical exposure. Some of those

> > people may

> > have a little more psychological stress that others; however, this

> > stress idea

> > did not deserve to become front and center issue with the newly

> > coined disease name,

> > Chronic Fatigue Syndrome.

> > For example, here in the Sacramento area, there were three

> > outbreaks of

> > Myalgic Encephalomyelitis (I hate to use the coined term--CFS---of

> > the CDC):

> > 1. Mercy San Hospital---200 hospital staff & spreading to

> > children of hospital

> > staff

> > and from there to the children's teachers

> > 2. Rosedale Hospital in Roseville, California--

> > 11 or more cases of ME diagnosed among staff on third-floor of

> > hospital--

> > Roseville is a town adjacent to Sacramento.

> > 3. Elk Grove High School, a suburb of Sacramento--epidemic among

> > teachers and

> > students

> >

> > My point here is that groups of people came down with the

> > disease due to

> > viral or chemical assault, and excess psychological stress does not

> > explain these

> > epidemic

> > outbreaks.

> > For me personally, I handled stress quite well BEFORE getting

> > the disease, Myalgic

> > Encephalomyelitis,

> > but of course a serious neuroimmune disease THEREAFTER makes one

> > prone to all kinds of

> > stressors.

> > However, the CDC is trying to build up the case for a genetic

> > susceptibility to

> > stress from birth.

> > This is just wrongheaded, as I said, because for the first 38 years

> > of my life, I

> > showed no

> > particular susceptibility to stress. I handled stress quite well,

> > thank you.

> > And also I'm not a Type A personality.

> > As one former park ranger in my support group says, there was only

> > one Type A

> > personality

> > in the whole group of park rangers that came down with Myalgic

> > Encephalomyelitis in

> > the 90s.

> > I do not need any doctor to use the words " fatigue " or " stress "

> > in any medical

> > appointment.

> > Du Pre

> > Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

> > " By words the mind is winged. " Aristophanes

> > Website for National Alliance for Myalgic Encephalomyelitis: http://

> > www.name-us.org

> >

> >

> >

> >

> >

[Guest guest]

" jill1313 " wrote:

>

> Barry Marshall directly swallowed a bolus of bacteria, which is

not the way it happens in the natural world, by the way. You don't

get that large a bolus of h. pylori. In addition, if I recall

correctly, he got well quickly, while one of his colleagues took

about 3 years to

> get well.

>

> There is individual variation. For instances, studies with allergic

> kids show that they have aberrant cortisol responses to a stressor

> even durng periods when they are not having allergies.

>

> So, they don't even know they're 'stressed' and yet, their systems

> have an underlying vulnerability/abnormality we can represent as

> stress (i.e. the stress response).

>

It was only four years ago that I was talking to a mother and her

teenage daughter who both had ulcers, and couldn't understand why

they both developed them about the same time.

I asked if they had been tested for H Pylori, and they looked at me

askance, not recognizing the term. Their gastroenterologist had

told them " stress " and bad diet. Daughter protested that she hadn't

been under any stress. Mother asked " But why a teenager who has

not had my years of stress " and were told " You're both living in the

same house, probably eating a similar diet " .

Correlation confused with causality again, despite the disparity

which should have been a clue.

They were certainly interested to hear the Barry Marshall story and

contrast that knowledge to the peculiarity that their

gastroenterologist had never mentioned H Pylori to them.

Every time you corner a psychologizer with the fact that emotional

stress has been consistently shown to be completely inadequate as a

causal factor in illnesses of known etiology, they suddenly switch

to Selye " Stressors " and attempt to say that they mean ALL " stress " .

Then after the moment has passed, they quickly revert to placing

stress in an " emotional context " and only making enough passing

reference to the vague possibility of " stressors " to keep

their " emotional stress " foot shoved in the door.

When the discussion of " stress " could swing either way, ME/CFSers

are rarely given the benefit of the doubt towards the physiological

kind.

-

[Guest guest]

I picked this up from a lyme list I'm on. Maybe it's one of the reasons we're

having this conversation about *stress*. If we stressed ourselves into a

disease that already has a stigma attatched to it with all the disrespectful

names then who would want to be labeled a type A personality with all that

judgement that goes along with it. Here's what the person on the lyme list

wrote and I think it's not that uncommon of a belief.

I personally have researched and researched trying to find the cause

of my maladies but Lyme or being stigmatised with a Syndrome (CFS,

ME, FMS etc) is all I can find.

Du Pre <isaiah40@...> wrote:

Hello,

I think I would agree with on this issue regarding the fact that

Myalgic Encephalomyelitis/CFS epidemics break out among a group of people

because of infection or toxic chemical exposure. Some of those people may

have a little more psychological stress that others; however, this stress idea

did not deserve to become front and center issue with the newly coined disease

name,

Chronic Fatigue Syndrome.

For example, here in the Sacramento area, there were three outbreaks of

Myalgic Encephalomyelitis (I hate to use the coined term--CFS---of the CDC):

1. Mercy San Hospital---200 hospital staff & spreading to children of

hospital

staff

and from there to the children's teachers

2. Rosedale Hospital in Roseville, California--

11 or more cases of ME diagnosed among staff on third-floor of hospital--

Roseville is a town adjacent to Sacramento.

3. Elk Grove High School, a suburb of Sacramento--epidemic among teachers and

students

My point here is that groups of people came down with the disease due to

viral or chemical assault, and excess psychological stress does not explain

these

epidemic

outbreaks.

For me personally, I handled stress quite well BEFORE getting the disease,

Myalgic

Encephalomyelitis,

but of course a serious neuroimmune disease THEREAFTER makes one prone to all

kinds of

stressors.

However, the CDC is trying to build up the case for a genetic susceptibility to

stress from birth.

This is just wrongheaded, as I said, because for the first 38 years of my life,

I

showed no

particular susceptibility to stress. I handled stress quite well, thank you.

And also I'm not a Type A personality.

As one former park ranger in my support group says, there was only one Type A

personality

in the whole group of park rangers that came down with Myalgic Encephalomyelitis

in

the 90s.

I do not need any doctor to use the words " fatigue " or " stress " in any medical

appointment.

Du Pre

Poetry website: http://www.angelfire.com/poetry/soareagle/index.html

" By words the mind is winged. " Aristophanes

Website for National Alliance for Myalgic Encephalomyelitis:

http://www.name-us.org

[Guest guest]

Did you know that eradicating h pylori increases the risk of

esophageal cancer?

There is a balance in everything.

>

> It was only four years ago that I was talking to a mother and her

> teenage daughter who both had ulcers, and couldn't understand why

> they both developed them about the same time.

> I asked if they had been tested for H Pylori, and they looked at me

> askance, not recognizing the term. Their gastroenterologist had

> told them " stress " and bad diet. Daughter protested that she hadn't

> been under any stress. Mother asked " But why a teenager who has

> not had my years of stress " and were told " You're both living in the

> same house, probably eating a similar diet " .

> Correlation confused with causality again, despite the disparity

> which should have been a clue.

> They were certainly interested to hear the Barry Marshall story and

> contrast that knowledge to the peculiarity that their

> gastroenterologist had never mentioned H Pylori to them.

>

> Every time you corner a psychologizer with the fact that emotional

> stress has been consistently shown to be completely inadequate as a

> causal factor in illnesses of known etiology, they suddenly switch

> to Selye " Stressors " and attempt to say that they mean ALL " stress " .

> Then after the moment has passed, they quickly revert to placing

> stress in an " emotional context " and only making enough passing

> reference to the vague possibility of " stressors " to keep

> their " emotional stress " foot shoved in the door.

>

> When the discussion of " stress " could swing either way, ME/CFSers

> are rarely given the benefit of the doubt towards the physiological

> kind.

> -

>

[Guest guest]

Edy Rayfield <edyrayfield@...> wrote:

> Maybe it's one of the reasons we're having this conversation

about *stress*. If we stressed ourselves into a disease that

already has a stigma attatched to it with all the disrespectful

names then who would want to be labeled a type A personality with

all that judgement that goes along with it.

>

I had an interesting conversation with Dr about this.

He goes to great lengths to reassure patients that they aren't

imagining things, and that their illness is truly " real " .

As we moved through different names for this illness, when each one

gained the slightest notoriety, psychologizers descended like

vultures with their " help " and notions of causality.

The name didn't matter, it was the unexplained nature of a new

phenomonen that caused them to circle and swarm, attracted by this

opportunity.

They put so much pressure on people to admit that they possessed

some mental failings and personal shortcomings that " allowed " the

illness, that it is almost impossible to evade some admission that

yours was not a perfect life. And most people eventually gave in.

This is reflected when people are almost apologetic for getting

CFS. Dr saw that this illness didn't care, and tries to

lift the self blame from patients that psychologizers work so hard

to CREATE. A " blame the patient " philosophy that is promoted to the

entire world as the real reason for each individuals failing health.

Dr will tell you flat out that no matter what mistakes you

may have made, or how much stress you may have had, he has seen

people who had none of these factors yet were hit with illness

anyway.

It wouldn't be so bad if psychologizers were only free to carry on

their belief systems in isolation from actual treatment, as they

must do for illnesses whose etiology is known, but for each emerging

illness, they emerge once more and work to create a climate that has

at its very heart a deliberate intent to deprive sufferers of

physiological therapies for a " real " illness.

And while this climate and their influence is steadily decreasing

as more evidence is accumulated, their very existence, persistence,

and ability to stand in the way of sufferers stands as an insult to

patients and a potential threat to anyone in the future who may have

the misfortune to approach the medical system again with

an " unexplained illness " .

-

[Guest guest]

" jill1313 " wrote:

> Did you know that eradicating h pylori increases the risk of

> esophageal cancer?

> There is a balance in everything.

Selective control of " Good vs. Bad " intestinal Flora by antibiotics

is problematic. Chemotherapy has always been known to have a risk vs.

benefit characteristic.

The role of science is to help us understand why factors got out of

balance.

And what can be done about it.

-

[Guest guest]

On Sep 8, 2006, at 8:13 AM, erikmoldwarrior wrote:

> Every time you corner a psychologizer with the fact that emotional

> stress has been consistently shown to be completely inadequate as a

> causal factor in illnesses of known etiology, they suddenly switch

> to Selye " Stressors " and attempt to say that they mean ALL " stress " .

> Then after the moment has passed, they quickly revert to placing

> stress in an " emotional context " and only making enough passing

> reference to the vague possibility of " stressors " to keep

> their " emotional stress " foot shoved in the door.

Show me where I have ever ONCE said stress -- of any flavor -- is a

" causal factor. " I would never argue such a thing, because I don't

believe it.

I have argued that stress creates fertile ground for pathogens.

Extremely fertile ground, in fact. Pathogens that might have been

readily rebuffed by a healthy person get a much stronger chance in

someone whose body is compromised by poor sleep, poor food, and poor

self-care. And that's consistent with centuries of scientific findings.

In my case, I had an unknown viral illness in 1977 that I'd come back

from slowly. By 1984, I was almost back to normal. Then I had this

bad year -- and was sent to bed for the following two years.

What caused it? The virus, or the stress? There's no way I can say it

was anything but both.

The context I am arguing is not just an emotional one. Never was. I

think my long post made that point clear -- why are you having such a

hard time with this?

I give up. I cannot possibly be more clear: some of you are so thick

that you cannot read the words I write. You simply jerk your knees,

continuing to argue against points I have not made, points you only

think you heard, points that are nothing more than projections of

your fears and have nothing to do with me at all.

The problem here is not my ability to express myself clearly. The

problem here is your complete inability to listen to what's being said.

I'm done with you. You obviously know so much more then all the

immunologists who've been telling us for decades that it's a bad idea

to run your body down.

Sara

[Guest guest]

>

> Hello,

> I think I would agree with on this issue regarding the fact that

> Myalgic Encephalomyelitis/CFS epidemics break out among a group of

people

> because of infection or toxic chemical exposure. Some of those

people may

> have a little more psychological stress that others; however, this

stress idea

> did not deserve to become front and center issue with the newly

coined disease name,

> Chronic Fatigue Syndrome.

Contracting an infectious diseaase is dependent on the status of the

immune system at the time of the contact - sometimes it is very

specific weakness in the immune system which allows this. This is why

many people come in contact with pathogens but only a cetain

percentage contract the disease. Sometimes this is a genetic weakness

sometimes acquired. One can have these immune weaknesses with or

without stress disorders. Of course once the disease has established

itself the individual will be under the stress of having chronic

infections - this stress and the many possible pathologies that

develop are self feeding stressors and can end a relatively healthy

person with severe stress disorders mental and physical. Many of the

mental symptoms are directly caused by the pathogens as they attack

the nervous system and the brain. Some of the mental symptoms come as

a result of the stress of losing control of ones life. Many people

have these diseases for years with no explanation or a viable

diagnosis and certainly no treatment - they are isolated and desperate

so it stands to reason that many will have great difficulty adjusting.

For those with mental symptoms caused by the pathogen - medicines or

other techniques for mental and emotional disorders will have no

effect. For those with stress disorders caused by the psychological

stress of having a chronic debiitating disease perhaps medicines and

stress management techniques will be helpful. But learning to live

well with this disease is certainly not a cure - it is a coping

strategy. Antidepressants or meditation or whatever has no power over

infectious states. For a large percentage of people this means they

must come to live with a disease that is destroying their lives and

seems to be getting worse and noone has as yet been able to help them

at all - adjustment to such circumstances is a very big adjustment

indeed. This stress contributes to the decline but of course it is in

no way the cause of the disease.

[Guest guest]

I like that, that Dr. is so reassuring. You can't imagine how many

doctors have wanted me to seek therapy or see a pshyciatrist, or put me on

anti-depressents. One doc even had the audacity to say in the old days they

called it " swooning " . The thing I don't quite understand is when one is accused

of thinking their way into illness, just how is that possible when it's the

furthest thing from your mind, you're barely into your 20s and you've never

heard of the symptoms you've got and are expecting to be grabbing life by the

tail for a long time. Then shazzam! Turn a corner and step into another

universe.

erikmoldwarrior <erikmoldwarrior@...> wrote: Edy Rayfield

<edyrayfield@...> wrote:

> Maybe it's one of the reasons we're having this conversation

about *stress*. If we stressed ourselves into a disease that

already has a stigma attatched to it with all the disrespectful

names then who would want to be labeled a type A personality with

all that judgement that goes along with it.

>

I had an interesting conversation with Dr about this.

He goes to great lengths to reassure patients that they aren't

imagining things, and that their illness is truly " real " .

As we moved through different names for this illness, when each one

gained the slightest notoriety, psychologizers descended like

vultures with their " help " and notions of causality.

The name didn't matter, it was the unexplained nature of a new

phenomonen that caused them to circle and swarm, attracted by this

opportunity.

They put so much pressure on people to admit that they possessed

some mental failings and personal shortcomings that " allowed " the

illness, that it is almost impossible to evade some admission that

yours was not a perfect life. And most people eventually gave in.

This is reflected when people are almost apologetic for getting

CFS. Dr saw that this illness didn't care, and tries to

lift the self blame from patients that psychologizers work so hard

to CREATE. A " blame the patient " philosophy that is promoted to the

entire world as the real reason for each individuals failing health.

Dr will tell you flat out that no matter what mistakes you

may have made, or how much stress you may have had, he has seen

people who had none of these factors yet were hit with illness

anyway.

It wouldn't be so bad if psychologizers were only free to carry on

their belief systems in isolation from actual treatment, as they

must do for illnesses whose etiology is known, but for each emerging

illness, they emerge once more and work to create a climate that has

at its very heart a deliberate intent to deprive sufferers of

physiological therapies for a " real " illness.

And while this climate and their influence is steadily decreasing

as more evidence is accumulated, their very existence, persistence,

and ability to stand in the way of sufferers stands as an insult to

patients and a potential threat to anyone in the future who may have

the misfortune to approach the medical system again with

an " unexplained illness " .

-

[Guest guest]

Mercuria wrote:

> The context I am arguing is not just an emotional one. Never was.

I think my long post made that point clear -- why are you having

such a hard time with this?

>

> I give up. I cannot possibly be more clear: some of you are so

thick that you cannot read the words I write. You simply jerk your

knees, continuing to argue against points I have not made, points

you only think you heard, points that are nothing more than

projections of your fears and have nothing to do with me at all.

>

> The problem here is not my ability to express myself clearly. The

> problem here is your complete inability to listen to what's being

said.

> I'm done with you. You obviously know so much more then all the

> immunologists who've been telling us for decades that it's a bad

idea to run your body down.

> Sara

The immunologists concepts do not apply here.

As Dr Cheney said right from the start, this particular illness has

absolutely nothing to do with " running the body down " .

It didn't hit people who were known to be immune impaired, quite

the opposite, just like Royal Free in which the vast majority of ME

cases bypassed the sick patients in the hospital and primarily hit

the nurse trainees.

The severity of this illness appears to be more based upon the

STRENGTH of the immune over-response.

When we looked at how many of us were athletes, didn't do drugs,

had a good diet, had none of the " risk factors " of being run down

and burned-out that was so often implicated - and contrasted the

amazing numbers of drug addicts, couch potatoes, high

stress " yuppies " who DIDN'T get the illness, it was pretty apparent

that theorizers had it completely backwards. We often wished we HAD

been those overstressed burnout drug users because it seemed like

almost none of them became ill.

We want researchers to look at this as an illness which not only

didn't restrict itself to people with an overabundance of " stress

and stressors " , it even acted in total opposition in enough cases to

show that their conceptual model doesn't fit the facts.

This anomaly is similar to the way that gastroenterologists refused

to look at unstressed children with ulcers as being a violation of

their fundamental concepts of causality.

I'm certainly not against reducing emotional stress or any other

factor to help lighten the burden, but sufferers have to face the

fact that psychologizers are seizing upon stories of " stress

reduction " improvement as confirmation that their assessment of

mental illness is accurate, and their primary focus of therapy is

even being demanded by the patients themselves.

Mixing " stress " and " stressors " without distinction, and

considering them to be " immunologically identical " allows whatever

portion of " emotional stress " that is being implicated to be used in

support of their behavioral-based treatment programs.

-

> 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.

-Sara

>

[Guest guest]

>

> :

>

> With all due respect, you're missing the point here.

>

> You and keep talking about " psychological stress. " The rest of

> us are talking about physiological stress -- a condition which

> psychological stress has been well-proven to contribute to, but

> hardly tells the whole story.

The story shared here is quite common. The story does not even have to

be as dramatic as this poster related. Even 'relatively' healthy

people can contract infections - infections that eventually destroy

their otherwise 'normal' lives.

I think we should be careful not to think that diseases like these are

new. Nothing could be further from the truth. These types of disease

have been described in the medical literatuue of every culture ancient

and modern. I was raised in a traditional culture in India and my

father and grandfather were traditional physicians - and they often

discussed these types of diseases (mainly because these diseases were

seen as difficult to manage) - example there is one disease process

which closely resembles HIV/AIDS this disease is called 'collapse of

immunity' - this disease has several manifestations several of which

have the same description and etiology as CFS and FMS. These diseases

for past thousand years have been believed to be caused by infections

which have overwhelmed the immune system and left the individual

vulnerable to a host of defeciency states. The end result of these

diseases is a type of exhaustive state caused by long term attempts to

deal with the collapse of the immune system. This is the same idea as

the modern concept of 'immune defeciency syndrome'.

I know that at least in the case of GWS Dr Nicholson has found a

genetically engineered version of the pathogens and this is beleieved

to be a germ warfare version of commonly occuring bacteria (like

mycoplasma). But regardless of that fact the further fact is that

these bacteria that have been genetically altered are in reality

common bacteria found everywhere in nature. These bacteria were

originally picked becuase of the fact that they are difficult to

diagnose and to treat - mycoplsma were seen as a perfect bacteria for

germ warfare because of these facts. But these bacteria have been

infecting human beings for ever. These types of disease in traditional

socities are quite common. In modern times these diseases usually get

put in the catagory of depression disease but the traditional

physicians do not treat it as a depressive disease they see it as an

infection and treat it as such - but the traditional doctors treat it

as an infection and get limited results using these protocols. In

traditional medicine many infections are considered incurable and now

we know why - it is very difficult to cure viral and mycoplasma

infections. Traditional medicine works fairly well with ordinary

infections but has no power over viral and other types of infection.

The traditional approach was to reduce the pathogens and strengthen

the immune system so that it will get the infection under control -

this is succesful in most infections - but in others it was useless.

Such diseases as were not benefited were put in a category of

incurable diseases. They were called incurable because no matter what

the doctor did it did not resolve the case. We still have such

incurable diseases but thankfully there are new insights being

developed that have already put thousands of people in remission from

these 'incurable' diseases.

[Guest guest]

On Sep 8, 2006, at 12:17 PM, erikmoldwarrior wrote:

>

>> 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.

> -Sara

If you're quoting this as some kind of refutation, it doesn't work.

What I'm describing here is post-exertional malaise -- THE cardinal

symptom that defines Hyde's description of ME.

When I take good care of myself and don't overdo, I feel better.

When I overexert myself -- whether that means getting too much

exercise, getting too little sleep, or spending too much time with my

mother -- I crash. It's called push/crash. You may have heard some of

us discussing it here in the past. There are any number of studies

suggesting that staying in a push/crash cycle makes us significantly

worse; and that breaking that cycle can do much to enable us to get

better.

Are you now arguing that post-exertional malaise and push/crash

should be dismissed as having nothing to do with ME, because they're

just another example of that non-existent psychological stress?

Sheesh.

Sara

[Guest guest]

" Vinod Kumar " wrote:

> I think we should be careful not to think that diseases like these

are new. Nothing could be further from the truth. These types of

disease have been described in the medical literatuue of every

culture ancient and modern.

>

We spent years having people tell us that " no such illness could

exist " , because they had " never seen it before " and that it was

impossible to overlook an illness that caused people to lose their

jobs and huddle in a darkened room, school children to be unable to

stand up and not recover, inability to tolerate noisy places or

sunlight, all the strange things that people had no remembrance of

ever encountering.

You can look back at the written testimony of doctors and the

universal theme is that this was completely outside their

experience, knowledge and recognition.

As far as they were concerned, either a nonexistent illness or an

entirely new one.

Patients scoured the country looking for doctors who had the

slightest knowledge of this - without succcess.

You can still read their stories.

Suddenly, almost overnight in the early 1990's, the concept changed

from " CFS can't exist because we've never seen it before " to " So

common that CFS doesn't stand out from the ordinary experience of

normal people " .

You have to actually observe this bizarre mental paradigm shift

from " Never seen it " to " So common that it's just ordinary " to

believe it!

The manner in which peoples brains just shift gears without

noticing they've put their minds in reverse is staggering.

But you can look at the written testimony of the past and find it.

Yes this type of illness has been described in the literature. I

met someone in 1980 who described the illness to me perfectly, and I

got in trouble with my friends for defending her, saying " Nobody

could make this up " . They had believed the doctor when he diagnosed

her with " Doctor Seeking Behavior " : " a mental disorder of sickness

beliefs seeking validation through doctor approval " .

The doctor told her friends and family that the worst thing they

could do was " enable " her illness by believing her.

I chose to believe her.

So I was on the lookout for more cases like this. I asked others

about clues for people with this strange " fatigue " and they simply

didn't know what I was talking about.

All that changed in 1985, when I watched this explode through a

population that had absolutely no familiarity with it.

So while the illness definitely existed before, the way society

responded is a testament to the vastly increased prevalence of

something that was not common enoough for society to have confronted

it in any meaningful or memorable way.

-

[Guest guest]

Mercuria wrote:

> If you're quoting this as some kind of refutation, it doesn't

work. What I'm describing here is post-exertional malaise -- THE

cardinal symptom that defines Hyde's description of ME.

>

> When I take good care of myself and don't overdo, I feel better.

> When I overexert myself -- whether that means getting too much

exercise, getting too little sleep, or spending too much time with

my mother -- I crash. It's called push/crash. You may have heard

some of us discussing it here in the past. There are any number of

studies suggesting that staying in a push/crash cycle makes us

significantly worse; and that breaking that cycle can do much to

enable us to get better.

>

> Are you now arguing that post-exertional malaise and push/crash

should be dismissed as having nothing to do with ME, because

they're just another example of that non-existent psychological

stress?

>

> Sheesh.

> Sara

>

Your former statements mixed the " stress of divorce and moving "

along with physical stress without distinction.

Now you assert that you weren't including emotional stress at all.

It would be so much easier to distinguish " mental stress " from

infections, toxins and overexertion if we just referred to the

latter as " infections, toxins, and overexertion " .

But this would deprive psychologizers of their most useful tool:

They can't be pinned down whether they mean one or the other.

Not to mention that none of these so called physical " stressors "

ever demonstrated any more capacity to create CFS than " emotional

stress " has done in comparable, or even more extreme cases of

hardship.

Those of us in the CFS epidemic didn't have the luxury being well

enough to have " post exertional stress " - " The Hallmark of ME " .

Our difficulties were more on the order of trying to stand up.

It was described in a book called " Osler's Web " .

You may have heard some of us discussing it in the past.

-

HILLARY JOHNSON TALKS ABOUT CHRONIC FATIGUE SYNDROME AND HER NEW

BOOK, OSLER'S WEB

Is chronic fatigue syndrome (CFS) an illness made up by emotionally

troubled people, or is it a legitimate medical illness?

Yes, it is absolutely a legitimate illness. In fact, studies show

that CFS is among the most severe of all medical diseases known to

man. In the last decade, there have been an abundance of scientific

studies that prove CFS carries with it a large range of

immunological abnormalities. In addition, scientists have shown that

the disease causes significant brain problems, in the form of

multiple small anatomical holes in the brain with concurrent I.Q.

losses. Cognitive--or thinking--problems, including short- and long-

term mem ory loss, inability to perform math calculations and to

appropriately " process " visual-spatial relationships are just some

of the problems CFS sufferers must cope with on a daily basis. Most

recently, in 1995, cardiologists at s Hopkins demonstrated that

CFS sufferers have a brain defect that results in abnormally low

blood pressure and low blood volume throughout their bodies.

Finally, although CFS has been repeatedly dismissed as a " yuppie

disease, " some studies show that the hardest hit segments of the

population are blue collar workers and the poor. This disease does

not respect class lines--everyone is at risk, including teenagers

and even very young children.

If CFS is for real, why does it get such a bad rap? Why do people

think it's just a condition of lazy people and malingerers?

The biggest single problem is the name, which not only fails to

describe the severity of the disease but which actually inspires

hostility toward the sufferer. People with CFS cannot get well

merely by getting more sleep, or, conversely, by exercising more. As

a matter of fact, telling CFS patients to force themselves to " go

out and get the muscles working " is about the worst prescription;

vigorous exercise only exacerbates the symptoms.

You say CFS is more serious than the name implies. What do you mean?

" Fatigue " is a most inadequate word in this case. There are elite-

class marathon cyclists with this disease who can no longer walk to

the corner; there are previously fit adults with CFS who are so weak

they must shower while seated on lawn chairs. Many CFS sufferers are

confined to wheelchairs, or to their beds. Once caught in the grip

of this disease, there are days when brushing your teeth or raising

a glass of water to your lips requires effort tantamount to pushing

a boulder up a mountain. Most seriously, intellectual abilities are

adversely affected. Commonly, the I.Q.s of CFS patients fall,

sometimes dramatically. Severely ill CFS patients have all the

symptoms of viral encephalopathy, including " ataxia, " which means

they cannot walk unaided because their brain and their limbs aren't

communicating.

[Guest guest]

So tell me how this endless arguing benefits me? At least with the

Yasko discussion we had an end goal of treatment in mind. Maybe it's

time to take a break from reading this list (for me).

-- In , " erikmoldwarrior "

<erikmoldwarrior@...> wrote:

>

> " Vinod Kumar " wrote:

> > I think we should be careful not to think that diseases like these

> are new. Nothing could be further from the truth. These types of

> disease have been described in the medical literatuue of every

> culture ancient and modern.

> >

>

> We spent years having people tell us that " no such illness could

> exist " , because they had " never seen it before " and that it was

> impossible to overlook an illness that caused people to lose their

> jobs and huddle in a darkened room, school children to be unable to

> stand up and not recover, inability to tolerate noisy places or

> sunlight, all the strange things that people had no remembrance of

> ever encountering.

> You can look back at the written testimony of doctors and the

> universal theme is that this was completely outside their

> experience, knowledge and recognition.

> As far as they were concerned, either a nonexistent illness or an

> entirely new one.

> Patients scoured the country looking for doctors who had the

> slightest knowledge of this - without succcess.

> You can still read their stories.

>

> Suddenly, almost overnight in the early 1990's, the concept changed

> from " CFS can't exist because we've never seen it before " to " So

> common that CFS doesn't stand out from the ordinary experience of

> normal people " .

>

> You have to actually observe this bizarre mental paradigm shift

> from " Never seen it " to " So common that it's just ordinary " to

> believe it!

> The manner in which peoples brains just shift gears without

> noticing they've put their minds in reverse is staggering.

> But you can look at the written testimony of the past and find it.

>

> Yes this type of illness has been described in the literature. I

> met someone in 1980 who described the illness to me perfectly, and I

> got in trouble with my friends for defending her, saying " Nobody

> could make this up " . They had believed the doctor when he diagnosed

> her with " Doctor Seeking Behavior " : " a mental disorder of sickness

> beliefs seeking validation through doctor approval " .

> The doctor told her friends and family that the worst thing they

> could do was " enable " her illness by believing her.

> I chose to believe her.

> So I was on the lookout for more cases like this. I asked others

> about clues for people with this strange " fatigue " and they simply

> didn't know what I was talking about.

> All that changed in 1985, when I watched this explode through a

> population that had absolutely no familiarity with it.

> So while the illness definitely existed before, the way society

> responded is a testament to the vastly increased prevalence of

> something that was not common enoough for society to have confronted

> it in any meaningful or memorable way.

> -

>

[Guest guest]

On Sep 8, 2006, at 3:00 PM, erikmoldwarrior wrote:

>

> Your former statements mixed the " stress of divorce and moving "

> along with physical stress without distinction.

Yes. I made the distinction. I pointed out that the divorce was

accompanied by weeks of non-existent sleep and a total lack of

appetite. Those comprise serious physical stressors, on top of the

clear physical effects on people's bodies when they are actively

grieving after a severe loss.

Moving: same deal. There are lists that prioritize life's most

stressful events. Moving (along with divorce and the death of a

relative) is in the top ten. I don't know about you, but when I move,

I tend to eat less well because I don't have a functional kitchen.

And I sleep less well, because I'm sleeping in makeshift places that

are not my own bed. When I had an exercise routine, it usually was

the first thing that went to hell during a move. The rest of my self-

care routine is disrupted as well, because all the gear involved is

in boxes. And I'm living in a new place, with new molds and bugs and

climate to get used to. The physical effects are not inconsiderable.

> Now you assert that you weren't including emotional stress at all.

People under emotional stress are often in situations that also

create substantial physical stress as well, as I show above. You are

trying once again to separate a bunch of stuff that all goes

together, and all plays a role.

> It would be so much easier to distinguish " mental stress " from

> infections, toxins and overexertion if we just referred to the

> latter as " infections, toxins, and overexertion " .

> But this would deprive psychologizers of their most useful tool:

> They can't be pinned down whether they mean one or the other.

, after over a year, it's really insulting that you don't know me

well enough by now to know that I do indeed argue that they are ALL

inextricably involved.

>

> Not to mention that none of these so called physical " stressors "

> ever demonstrated any more capacity to create CFS than " emotional

> stress " has done in comparable, or even more extreme cases of

> hardship.

I never argued that they had any MORE capacity. But you seem to be

arguing that they have LESS than the usual effect -- because you

consider it un-PC for any emotional factor to be remotely involved in

the cause, progress, or cure of CFS or ME.

But when you accept that, you've allowed your so-called

" psychologizers " to define, on your behalf, what the disease is or is

not. I thought that's precisely what you DIDN'T want to do -- but

you're giving them that victory.

This argument started because I was willing to stand up on behalf of

the many silent members of this list who DO recognize that there was

a stress component in the progress of their disease. Rich has said

that he has heard off-line from many of us. I had the audacity to say

out loud that silencing us and demeaning or denying our experience

was both bad science, and harmful to the purposes of this list -- and

yet it happens, every time one of us dares to speak up. It is wrong.

I asked for it to stop.

Which you took as an open invitation to prove my point for me. And

you continue to prove it, over and over again, every time you respond

to one of my posts. You ARE trying to silence me and denigrate my

experience of what happened. That is exactly what I said would

happen. You are giving everyone a perfect example of how it happens

-- and how ignorant and hateful it is, too.

I would never presume to deny your experience the way you seek to re-

interpret and denigrate mine. You call yourself a " warrior, " but real

warriors do not turn their weapons on people on their own side. Any

real officer would put you far on the sidelines, because you are

irrational, angry, and out of control. Those are things a true

warrior can never afford to be.

But I have won this argument, about three times over now. Concede

your defeat, please, and go home. Or continue to harass me, and watch

me report your ass to Ken. Because I'm quite sure that repeatedly

insulting and harassing other members who are simply recounting their

experiences has GOT to be a violation of whatever rules he uses to

run this list.

Sara

[Guest guest]

Mercuria wrote:

> This argument started because I was willing to stand up on behalf

of the many silent members of this list who DO recognize that there

was a stress component in the progress of their disease. Rich has

said that he has heard off-line from many of us. I had the audacity

to say out loud that silencing us and demeaning or denying our

experience was both bad science, and harmful to the purposes of this

list -- and yet it happens, every time one of us dares to speak up.

It is wrong. I asked for it to stop.

>

Yes, I know that many feel that stress is a major contributor to

their illness, but Rich has said many times that he believes CFS is

from a combination of " stress and stressors " so I stood up on behalf

of all of us who caught " Yuppie Flu " - " the flu from Hell " which

didn't care about anyones emotional state.

Those of us who perceive CFS in that way would like treatment for a

physiological illness and let the mental state take care of itself -

preferably by reduction of inflammatory cytokines as infection

subsides.

When it comes to presenting " CFS " , I thought it should be clear

that we have no precedent or knowledge of any kind of emotional

state that can result in this specific illness, even as a partial

contributor.

After all these years of having this illness dismissed as AIYH, and

having research denied on that basis, it amazes me if I ever hear

someone make any reference to the role of emotions in their illness

without wishing it plainly understood that if their physiological

illness were addressed, there would be no need for any palliative

psychiatric interventions.

Remember when Herpes raced through the population?

People would say that " Stress causes Herpes " because they would have

a flare-up after an emotional problem? And prior to Acyclovir,

people tried all kinds of stress reduction to " get rid of Herpes " .

But no amount of stress can ever " cause Herpes " if one doesn't have

the viral infection. And peoples mental state didn't seem to have

much of a role in whether one catches Herpes or not.

I'm all in favor of Herpes sufferers reducing stress to control

their infection, but I got myself in trouble with them for saying

that stress cannot cause Herpes in exactly the same way I make

people angry for insisting that stress cannot cause CFS.

And they say " You cannot leave stress out of it " .

When it comes to the basic issue of whether or not one has a virus

or catches I virus - I believe that I can.

If you view the role of stress as nothing more than an exacerbating

factor in CFS, then I'm sorry and apologize for my misunderstanding

-

[Guest guest]

,

Thank you for the posts about CFIDS from Osler's Web, and about the mentality of

Bugs, and about the CFIDS Docs who have risked their careers for us, when we've

had no one else.

Katrina

>

> > This argument started because I was willing to stand up on behalf

> of the many silent members of this list who DO recognize that there

> was a stress component in the progress of their disease. Rich has

> said that he has heard off-line from many of us. I had the audacity

> to say out loud that silencing us and demeaning or denying our

> experience was both bad science, and harmful to the purposes of this

> list -- and yet it happens, every time one of us dares to speak up.

> It is wrong. I asked for it to stop.

> >

>

> Yes, I know that many feel that stress is a major contributor to

> their illness, but Rich has said many times that he believes CFS is

> from a combination of " stress and stressors " so I stood up on behalf

> of all of us who caught " Yuppie Flu " - " the flu from Hell " which

> didn't care about anyones emotional state.

> Those of us who perceive CFS in that way would like treatment for a

> physiological illness and let the mental state take care of itself -

> preferably by reduction of inflammatory cytokines as infection

> subsides.

>

> When it comes to presenting " CFS " , I thought it should be clear

> that we have no precedent or knowledge of any kind of emotional

> state that can result in this specific illness, even as a partial

> contributor.

> After all these years of having this illness dismissed as AIYH, and

> having research denied on that basis, it amazes me if I ever hear

> someone make any reference to the role of emotions in their illness

> without wishing it plainly understood that if their physiological

> illness were addressed, there would be no need for any palliative

> psychiatric interventions.

>

> Remember when Herpes raced through the population?

> People would say that " Stress causes Herpes " because they would have

> a flare-up after an emotional problem? And prior to Acyclovir,

> people tried all kinds of stress reduction to " get rid of Herpes " .

> But no amount of stress can ever " cause Herpes " if one doesn't have

> the viral infection. And peoples mental state didn't seem to have

> much of a role in whether one catches Herpes or not.

> I'm all in favor of Herpes sufferers reducing stress to control

> their infection, but I got myself in trouble with them for saying

> that stress cannot cause Herpes in exactly the same way I make

> people angry for insisting that stress cannot cause CFS.

> And they say " You cannot leave stress out of it " .

> When it comes to the basic issue of whether or not one has a virus

> or catches I virus - I believe that I can.

>

> If you view the role of stress as nothing more than an exacerbating

> factor in CFS, then I'm sorry and apologize for my misunderstanding

>

> -

>

[Guest guest]

Two standout experiences for me with doctors:

I asked doctor 1 when I was first diagnosed with MCS - what did I do to deserve

this? I'm doing all the " right things " . She smiled, shook her head and said,

" shit happens. " I remembered that conversation every time someone tried to tell

me it was all in my head.

Doctor 2 called my husband into his office after examining me. He said " it's not

all in her head, she's very, very sick. She's lucky to be alive. " My husband

nearly fell over with shock. A year later he admitted that up until then he had

thought it was psychological. I'd been sick for eight years.

I am forever grateful for these powerful, positive, supportive messages.

Re: False attributions, and the right to comment.

Edy Rayfield <edyrayfield@...> wrote:

> Maybe it's one of the reasons we're having this conversation

about *stress*. If we stressed ourselves into a disease that

already has a stigma attatched to it with all the disrespectful

names then who would want to be labeled a type A personality with

all that judgement that goes along with it.

>

I had an interesting conversation with Dr about this.

He goes to great lengths to reassure patients that they aren't

imagining things, and that their illness is truly " real " .

As we moved through different names for this illness, when each one

gained the slightest notoriety, psychologizers descended like

vultures with their " help " and notions of causality.

The name didn't matter, it was the unexplained nature of a new

phenomonen that caused them to circle and swarm, attracted by this

opportunity.

They put so much pressure on people to admit that they possessed

some mental failings and personal shortcomings that " allowed " the

illness, that it is almost impossible to evade some admission that

yours was not a perfect life. And most people eventually gave in.

This is reflected when people are almost apologetic for getting

CFS. Dr saw that this illness didn't care, and tries to

lift the self blame from patients that psychologizers work so hard

to CREATE. A " blame the patient " philosophy that is promoted to the

entire world as the real reason for each individuals failing health.

Dr will tell you flat out that no matter what mistakes you

may have made, or how much stress you may have had, he has seen

people who had none of these factors yet were hit with illness

anyway.

It wouldn't be so bad if psychologizers were only free to carry on

their belief systems in isolation from actual treatment, as they

must do for illnesses whose etiology is known, but for each emerging

illness, they emerge once more and work to create a climate that has

at its very heart a deliberate intent to deprive sufferers of

physiological therapies for a " real " illness.

And while this climate and their influence is steadily decreasing

as more evidence is accumulated, their very existence, persistence,

and ability to stand in the way of sufferers stands as an insult to

patients and a potential threat to anyone in the future who may have

the misfortune to approach the medical system again with

an " unexplained illness " .

-

[Guest guest]

Thanks ,

For bringing up the Royal Free ME outbreak. A few months ago I met one of the

survivors. She was a

young doctor at the hospital and still has ME.

She mentioned that she had been fit and strong when the outbreak occured. They

had many ill and

vulnerable patients but she was hit worse than they were.

This doctor was in a different department and not responsible for their care.

She was not stressed

out and under pressure.

Before I was hit by ME I was well, happy and able to run around the hills very

well.

We are either talking about 2 very different patient populations or diseases

here, or as said

in an earlier email this disease has changed so much so that the non-acute onset

presentation is

different.

Kindest regards,

Annette

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