Re: Re: CFS, teachers and stress

[Guest guest]

On Jul 15, 2006, at 12:32 AM, kattemayo wrote:

>

> Many people (most I know, and MOI) with ME/CFS were in the Prime of

> Life, and happiest time of our lives when we got smashed to

> smithereens.

>

> I know hundreds, and there are millions, of HIGH STRESS people who

> do not have this hideous disease.

And probably don't have our genetic profiles, either.

>

> Even earliest studied connections between stress and CFS have

> been vastly perverted in a couple of ways:

>

> A) One was that high stress, physical or other, the year before, or

> at the time... might make one more suceptable? to contracting

> " it " ...but there still was an " it " ...what is " it " ?

> {Some people might be more suceptible to a flu epidemic, but there

> still has to be a flu virus to get the flu}

>

> Somewhat related to this model, I did have alot of stress a year,2

> *before*.}

>

>>> We know that a high percentage of school teachers have cfs.<<<<

>

> If so, viral/contagion could account for that. Day care workers are

> notorious for being sick alot...lots of bugs around in close quarters.

> There is also high percentage of health care workers/nurses with CFS.

>

> Another is that AFTER contracting CFS, there is extreme

> " stress " intolerance...this ranges from a long trip, a move,

> shopping, simple conversation, an emotional exchange, noise, or too

> much movement in the room. Depending on severity of case.

> The system being so fragile and mal-functioning due to " it " and

> *resulting* damage.

I had what may have been the precipitating illness about seven years

before I got seriously sick.

But the year I finally crashed was (and remains) the single most

stressful year of my life. That year, I had:

One divorce, and one rebound breakup (the rebound was with a guy who

also had CFS-type issues)

Four inter-city moves (including two mold-infested houses, one of

which was built on a toxic site)

Three 10-week work projects that required 100 hours+/week

Two car crashes (in the space of one week)

One serious kidney infection, followed by

Two weeks of antibiotics I was seriously reactive to

Two deaths in the family

One unwanted pregnancy

Persistent financial crunches

By the time the year ended, I was such a wreck my body went on strike

and refused to produce a period for the next 10 months. Now, I know

that this is a classic symptom of a thyroid in free fall. At the

time, though, I didn't have insurance, so there was no doctor on the

scene to notice that my health was collapsing.

The genetic and viral preconditions may all have been there -- but

I'm not at all convinced I would have gotten that sick if 1984 hadn't

put me through the stress grinder the way it did.

Sara

[Guest guest]

On Jul 15, 2006, at 4:45 PM, kattemayo wrote:

> It seems to me that that maybe some super genetic person could

> *maybe* have that level of stress and not become ill.

Thanks for that validation. When I went back and added it all up, I

was boggled, too.

> But

>

> A) I don't think it would take faulty genes, or *even* a pathogen

> to have health compromised under those conditions. But that still

> would seem more recoverable than what you've experienced.

I'd suggest that it took both (or all three -- genes + pathogen +

stress) to get me here. I was pretty robust before I got sick.

> If there was a viral outbreak around, or one already lurking, it

> would not even have to be virulent to take you. or anyone, down.

> If it was a hard-hitting one, you would surely be of the most

> vulnerable for it to take hold, IMO. That still would be an

> " it " ...opportunistic to the max.

That's my take on it, too. I was very soft ground for whatever was

around. The stress didn't cause my illness -- but it opened the door

and invited it right on in.

And I do have faulty genes on at least a few fronts. The known ones

include a serious predisposition to viral myocarditis, and a SNP in

at least one important methylation gene. I'm sure I'll find out more

when I do the genetic tests, but these two are pretty clear already.

In a year like '84, when I was already weakened by stress, it makes

sense that these two fronts would be among the first places my

defenses would fall.

> In 1985, I was in a wonderful, promising time of life. My first hit

> was hard and unique...the flu that does not go away...then waxing

> and waning for months. IT was crystal clear that it was " something

> different " . I could feel it at cellular level. I even got HIV

> tests, the only unique extreme immune thing I knew of. It left an

> awful daily sore throat waxing and waning for years, plus most

> other classic CFS sx...immune, cognitive, weird muscle pain. But

> the 1st onslaught had lifted enough to push through. I was on

> parallel positive growth in life and spritually healing time.

> Eating, living well and healthy. I was geared to do " more " when

> feeling bad, such as hit the spa, swim, etc.

> Never dreaming that would make me worse. Even tho, it was after

> that that the throat/exhaustion/pain would flare.

Check. By '87, I was back up and at 'em, working 60+ hours/week,

running 10 miles, hiking, traveling, partying on. I still needed a

complete rest day (or two) every weekend, but mostly, I'd pulled out

of the first trough.

The second one hit in '93, after the birth of my second child. That

one put me down for seven years.

> I can't believe what I'd still been trying to show up for...like

> work, new career offers and Board meetings of a community

> center...speechless, more or less slumping.

> I now see this as denial, perserverance, no outside reality check,

> but also brain impairment!

Yes!!! I carried on like nothing was happening. It's just boggling

now to see what I tried to take on. Two kids, a house, a marriage,

important corporate and magazine clients, board memberships, running

a conference....and that was just 1992....

> The clinic I went to repeatedly said " nothing abnormal is

> indicated " . I lay on the floor when waiting to be seen. I had heard

> of CFS and had papers copied. They refused to read or evaluate me

> for it. They refused a brain scan. They suggested a Psychiatrist

> and anti-depressants. They put me on Disability, but required an in-

> person re-certification every few weeks.

At least you got disability. I'm still trying to figure out how to

make that happen. (Anybody know a good disability attorney in the

Seattle area who can make a case for CFS?)

> I still had no idea that at that very time, and for the last

> years, tens of thousands were having an identical experience!!!!

> Including in my own community.

I didn't, either. I didn't even have a diagnosis until 1997 -- and

even at that, the doctor didn't even think to refer me to a CFS

specialist. Since I was in the Bay Area (and had first-rate

insurance) at the time -- and there were half a dozen good ones

within an hour's drive -- this is unconscionable to me now.

> This is why " original CFS " and those with it...the outbreak...for

> which a name was needed and assigned...pitiful as it is...matters

> so much. We still have it, and the damage, and many are STILL lying

> 22+ hours, in dark, quiet rooms, torture, or have taken their

> lives, or died in their sleep. I am " lucky " ...semi-functional, with

> all of the symptoms, including babbling idiocy often, but not

> always,and Diastolic Dysfunction, Lactate spikes in brain, impaired

> executive function, tons more...but some treatments.

And you've at least had all the proper tests, which I'm still trying

to get.

> No one else in my family has ever had anything remotely similar,

> tho I think some may have " some " MCS, and one gifted nephew has ADD

> (as does my sister-in-law, his mother).

My grandmother and dad both had post-polio syndrome. I hate looking

in the mirror and seeing myself become them, but there it is.

> There is no way on Earth that I believe that stress, psyche, or

> genes are the *cause* of this debacle. But those 3 certainly have

> been altered by it.

Exactly. It's understandable that people get very upset whenever this

subject comes up, given how many people have tried to tell us it's

all just stress-induced.

But the connection between stress and immune function is so clear now

as to be indisputable. Stress doesn't make you sick: but it depletes

immune function, creating the conditions that will enable pathogens

to find you and gain a stronger foothold than they might otherwise.

Especially in those places where you may already have a genetic

weakness.

> AS for the CDC, they should be held accountable for crimes against

> humanity...they did not do their mandated job...investigation,

> public alert/education/research.

Cort's not wrong. They have been better the past five years or so, at

least on the research front.

But we and our doctors deserve up-to-date, accurate information on

the whys and hows of the disease, preferably from experts who've

spent decades treating it. The fact that they're not generating any

of this -- well, it's far less than we deserve.

If they'd done this to AIDS patients, there would have been riots in

the streets. But we're just too tired for that.

Sara