Re: Cort: overlaps and distinctions

August 19, 2006

Sara,

I can see better where you are coming from about focusing on the genes.

THis won't go down very well, but I do not anticipate genetics will keep us out

of the Psych, Pharma, or other restrictive realms.

AS a matter of fact, people who are getting gene testing might want to do some

homework on what may be the outcome of genetic/stressor findings on one's

record...especially the younger.

Do not count on Medical records remaining private, either. They are streamlining

them, to be available in totality in an instant to any Medical or other Agency.

In the April 06 CDC Press Conference, announcing the CFS gene/stressor findings,

Reeves of the CDC, the primary investigator of CFS for 20 years, said a

promising result of these studies, will be treatments such as Quote: " Cognitive

Behavioral Therapy and/or medications " .

This is at the same time that Klimas has a positive article in MS.

Magazine about the genes affected being of the Immune and CNS systems.

Which direction do we think these will be skewed in deciding direction,

Policies, Health Care, benefits and treatments for us?

Then, there is also the Bush plan to screen the entire US population for Mental

Illness, with goal being to give custom made drugs to each person. It's called

the Freedom Intitiative or something like that, and it already began in some

states with screening mothers and school children. You can google it under " Bush

to screen US population for Mental Illness " .

My own County, with many years need for Mental Health services, ALL OF A SUDDEN

has had a 20% jump in it's budget and are hiring bunches of new people (not all

professionals).

There is a Wellness Center planned to teach people how to eat, manage their

medications and mental illnesses better. This sounds Fabulous and I hope and

pray it helps.

But I also know that ME/CFS and OTHER DISEASES are being diverted more to

psychological and stress- " coping " disorders.

With all of the hard Science in ME/CFS and other diseases discovered, but

misinterpreted, unfunded, forgotten, or dimissed already, this only progresses.

The modern field of genetics is in infancy stage. Obviously, with it's exciting

potentials, there is a rush to utilize it, and to be the first to make

discoveries. There's nothing wrong with that per se.

But Geneticists themselves say they do not really understand it all yet,

Scientifically, and that there are Humongous ethics issues involved (as I know

you know).

They include

A) WHO will decide the direction of Medicine, Research, Treament, and Social

policies based on Genetics...and what will those be?

There are already major expensive rip-offs from Laboratories and others

providing genetic testing and counsel for patients.

By whom and how is that being

monitored?

There are also many other exciting aspects of Genomes...I guess maybe it's one

debate area...

but how the Genes are currently expressing is more important to some than just

the ones we have sitting there.

That is the work that Jonathon Kerr, Enlander, and Gow are doing. Part of

it will be named after our CFSFMEx list member who passed away in Dec 05...

Breckenridge.

It's all very relevant and exciting, including to see what our genes tell us

about these pathways.

But jumping on the findings of " CFS-Like " people's genes findings, which seems

to include abandoning or dismissing the exciting ME/CFS specific

Research/Researchers (and need to showcase/fund) is a little scary to me, and

frankly, similar to business as usual.

Especially when no one doing it seems to be aware of all that may be involved in

this " Genetics " and ME/CFS day and age.

AS you said, even people with better genes and AIDS still died.

" Funky genes " aren't going to save us, as things look so far.

Katrina

> >> Why is it so hard to credit the idea that people whose bodies aren't

> > under biochemical stress -- who are relatively healthy, happy, eating

> > well, and so on -- are more resistant to breaking down under the

> > neuroimmune onslaught of CFS? At the very least, it may hit them more

> > slowly. This is true of every other disease under the sun; it's why

> > people try to eat well, get enough exercise, and generally stay

> > healthy.

> >>

> >> I'm not arguing that general good health is the only factor; but that

> > it probably plays some kind of role that shouldn't be discounted

> >> entirely.

> >

> > Doctors and society in general have worked vigorously to discount the

> > notion that an epidemic has occurred - and the argument they use

> > is " You can't discount the fact that you are probably mentally weak,

> > genetically susceptible, and didn't take good care of yourself " .

> > No matter how many times you point out that the epidemic " spread like

> > an epidemic " , this " clue " is discounted and dismissed: " Well, I

> > didn't

> > get it - so it must have been something YOU did wrong " .

> > I just described, again, how this illness raged through a population

> > and gets blamed on " allostatic load " and " stress " when it just plain

> > didn't act like burnout and bad diet - and you respond by reinforcing

> > the argument that these factors should not be discounted.

> > Don't you want researchers to discount them at least to the extent of

> > recognizing that it is not " normal " for this illness to happen at all,

> > to anyone?

>

> Thanks for at least asking me if I agree with your strawman. Of

> course I don't agree with it. But that also doesn't mean I want these

> factors discounted entirely -- mainly because the plain fact is that

> for every other infectious disease known to humankind, being

> genetically susceptible and physically weakened counts for quite a

> bit when it comes to who gets sick, and how sick they get.

>

> Fact is, people who get measles, malaria, mono, and everything else

> in between are subject to genetic susceptibility; and their

> resistance is only as good as their relative strength when the

> infection hit. If we try to argue that CFS is the first disease for

> which this isn't true, we're basically saying that this is somehow

> different than any other infection under the sun. And that doesn't

> really help the cause, either. That's a very daring scientific claim

> to make, and extreme claims require extreme proof. I don't think

> we're likely to summon that proof. If we did, we'd have to change

> some of the fundamental assumptions of modern medicine. ly, my

> dear, I think we've already got quite enough on our plate without

> adding that burden to it as well.

>

> I think evidence is building for the idea that genetics counted for a

> whole hell of a lot here, It explains why vigorously healthy people

> got so whacked by it; and why some people regained much of their lost

> function while others withered away. It also goes a long way toward

> explaining the various subgroups. In fact, it explains all these

> variations much more reasonably than any pathogen-based answer we've

> come up with over the past 20 years.

>

> If it's a choice between " you have bad genes " and " you're a crazy

> goldbricker, " there's no question which one I'll cop to first. And it

> may ultimately come down to just that choice. I didn't choose this

> damned disease; and I'm open to any scientific theory that explains

> how it chose me. " Bad genes " fits better than any thesis I've heard

> anyone come up with so far -- not least because it proves

> conclusively that we have a medical issue, not a psychological one.

>

> Sara

>

August 19, 2006

Except for a total unwillingness to mess with antibiotics, (and thank you, Jill,

for explaining more reasons to feel that way), I agree with Jill's view here,

especially how the three elements may combine.

The thing is, if the third element between bugs and genes IS environment,

infectious events are going to continue increasing. Various bugs we may not yet

have discovered, will emerge as debilitating or lethal. What then? More and more

people on a lifetime of more and more antibiotics? I suppose that is a possible

way to go.

Since there is no end in sight to the corruption of the planet, that leaves us

with only the genetics to work with. Work arounds.

That has its down side, too; you enable people with vulnerabilities to breed

more like themselves instead of letting natural selection run its course and

eliminate their genes from the pool.

There is another problem that I have never heard recognized, probably because it

is too inflammatory. I learned of it through my late husband, who lived a tribal

lifestyle for 85 yrs, starting in 1890. He told me that it used to be the case

that if an infant survived a serious illness in it's first year, the parents

could feel confident that this child would have a long, healthy, life. (Mind;

the only treatments were herbal and spiritual for the most part.)

But we, now, use heroic measure to preserve the lives and breeding potential of

every child born. Think of what that does for the gene pool.

I am not proposing we abandon the infants or the technology we have created to

weaken ourselves. That is not gonna happen anyhow. I do not know the answer.

Adrienne

Re: Cort: overlaps and distinctions

That, or there are environmental loads on these genes that they are

not prepared for. One researcher mentioned to me and was going to try

and find a study he'd run across a while back, where one group of

squirrels sickened from bubonic plague (they are carriers, esp rock

squirrels) and another group did not. The difference was the heavy

metal content in their soil.

So it is possible that industrialization has led to levels of metals,

pesticides, poisons...a depleted food supply...levels of sugar in the

diet that are too high, indiscriminate use of antibiotics changing

bowel flora, generations of children too many of whom were raised on

baby formula etc etc. We not only have epidemics of autism and high

rates of CFIDS we have an epidemic of type two diabetes, even in

children, and obesity.

It is also true that some of the bugs in ticks might be bioweaponized,

perhaps mycoplasma was genetically altered, and/or perhaps the bugs in

ticks have combined in novel and synergistic ways to make some people

very sick.

It is also true as Adrienne posted that genetics makes some people

uniquely vulnerable to any pathogen and others less vulnerable and

others not at all. No pathogen is universally destructive.

And there have always been outbreaks; what tends to happen with all

pandemics or outbreaks is they are more virulent initially. The

pathogens that do best are the less virulent ones that can coexist

with the host fairly amicably, so as epidemics spread they become milder.

All the above is true, and likely to vary in its significance

according to time, individual genetics, individual load, virulence of

the particular pathogen (depending on its novelty in appearing in a

particular group), and so on.

To me, it isn't a good answer, although its an adequate answer and

better than nothing, to take antibiotics in perpetuity. This has a

downside, in breeding resistant bugs of all kinds within your own

ecossytem, passing those resistant bugs on to others, suffering

breakthrough infections from those resistant bugs, and giving other

species such as fungi the upper hand. Over time this heavy

antimicrobial therapy has a downside. It is far better than lying in

bed without a life, if you can tolerate it. But if one were to have to

remain on antimicorbial therapy it would be better at least to pulse

it when the infection flared up.

Also, antibiotics do work as anti inflammatories, which is why

biotechs are trying to isolate that aspect of minocycline. And valtrex

apparently may work on excess adenosine, which can be elevated in some

folks.

The answers are complex and each individual needs to study and

experiment and find their own way.

> So it is our task to explain to researchers that that even if they

> find a genetic correlation, that there must still be an " x factor " that

> is causing these genes to be expressed at an increasing rate of

> prevalence which exceeds reproductive possibility.

> -

>

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.

August 19, 2006

On Aug 19, 2006, at 6:26 AM, kattemayo wrote:

> THis won't go down very well, but I do not anticipate genetics will

> keep us out of the Psych, Pharma, or other restrictive realms.

>

> AS a matter of fact, people who are getting gene testing might want

> to do some homework on what may be the outcome of genetic/stressor

> findings on one's record...especially the younger.

>

> Do not count on Medical records remaining private, either. They are

> streamlining them, to be available in totality in an instant to any

> Medical or other Agency.

Two things here. First: I'm a futurist, and this is an issue that

gets debated often and at very high levels within the profession.

Second, the geneticist who was in charge of assembling the database

of information gathered for the Human Genome Project is a close

social friend of my husband's and mine. (He's now a professor of

genetics at a university here.) As you might imagine, there are few

people in the world who've spent more time thinking about the

implications of this information than he has. It's something that

gets discussed whenever we're together with these friends.

So these are issues I'm hardly unaware of. And my opinion is: we are

not going to stop this particular train. But riding it is going to

bring us to a very different place, and probably not a bad one in the

end.

One of the rules of thumb among futurists is that " All technology is

dehumanizing in its first generation. " If you think about it

historically, it's hard to find exceptions. New technologies require

paradigm shifts. They pose challenges we're not conceptually prepared

to handle. They surprise us with their demands. Beyond that, they're

almost always half-baked from a design perspective -- after all,

we've never done this before -- which means they create practical

problems (pollution, disease, social effects) that take time to

emerge, get recognized, and work through.

Eventually, a second generation emerges (as is happening with both

automobiles and nuclear power plants right now, to cite two examples)

that usually resolves about 70% of the major problems, and is

typically several times less damaging to society and the environment.

At the same time, society evolves rules and paradigms that allow it

to maximize the benefits, and guard against the dangers. At that

point, the technology (whatever it is) becomes accepted as a normal

and reasonable part of our experience.

With that in mind: Yes, we're going to be at a stage in 20 years or

so where everybody gets their whole genome mapped at birth. (It's too

expensive now, but is coming down in price at an exponential pace.

Our geneticist friend says we're less than a decade, perhaps much

less, from a test that will map our entire genome for under $1000.)

So, yeah, that information's going to be in everybody's computerized

medical files.

And what we are going to learn from this is that everybody has " bad

genes " of one kind or another. Weaknesses and susceptibilities

abound. You want to cut people out of insurance pools -- you're going

to have cut *everybody* out, until there's nobody left to insure. You

can't run a health care system by just focusing on the healthiest 10%

of the population, which is what the insurance companies will try to

do (no change there). But, in the end, this attempt will be the thing

that finally illegitimizes them, and results in their being removed

from the scene altogether.

Politically, all that information should serve as a reminder to the

last First World nation without national health care that the only

way to deal with this is to spread the risk and provide government-

sponsored medical services for everybody. You want your issues

covered? Then pony up for other people to get their issues covered,

too. It's called sharing the risk, and it's what insurance -- and

government -- is supposed to do when it's working right.

Socially, yes, there are going to be some horrible stories emerge in

the early years. Governments, insurance companies, employers, and

others will get into the information and use it to hurt people. There

will be news stories, ghastly events, massive class-action suits,

sweeping new laws. That's what it looks like when society assimilates

a new technology. It'll take a few decades before we get the rules

and systems worked out in ways that maximize the good and protect

people from the bad.

At the same time, the technology itself will move forward. My friend

the geneticist says we're less than 10 years from the first

treatments that will actually allow us to make permanent corrections

to " bad genes. " Once we can make such corrections on any gene --

probably 20 to 30 years from now -- all the above concerns will be

pretty much irrelevant. You've got bad genes, no problem. we fix 'em.

Of course, that will have the potential to unleash a whole new set of

issues about how we change ourselves. And in the process, it will

create political, social, medical, and scientific shockwaves of its own.

Worrying about it doesn't stop it. But looking ahead and planning for

it can help us manage the change, and direct it in ways that increase

benefit and reduce harm.

As for CFS/ME: It seems highly likely to me that, as this unfolds and

we understand more about the genes involved, the boundaries that

define this disease are going to shift radically. Given how badly

they were defined in the first place, I'm not afraid of this, either

-- as long as those redefinitions bring us closer to something more

accurately resembling truth -- a quality we've been very short on in

the history of this disease. I've got no pet definition to defend

here: the disease parameters we've got now seem clearly designed to

prevent us from finding answers, rather than helping us. If finding a

common gene set helps restore some clarity to this badly muddled

effort and puts it back on track, I say bring it on.

Sara

August 19, 2006

Do I hear here a basic outlook that we are actually progressing toward a better

future? Or just a different one?

I am personally balanced between optimism and pessimism. I have no information

that tells me humankind is one whit better off that it was at any other point in

time. There are more people, and they tend to live longer, but I don't know that

that adds up to improvement. Nor do I know that about any apparent change for

the better.

Adrienne

Re: Re: Cort: overlaps and distinctions