Re: IEQ/PIR - & Proposal

[Guest guest]

Sharon, Janet, , others and Group,

--See my proposal at the end.

You are all right on target about the IEQuality group. Very few have

or consider the real world experience of those with a high Personal

Impact Rating (PIR). Most can handle those at a 3, a few can go to

the lower 4s. Only one or two can even comprehend a 5 and 6.

Quick review for those that are new or need a refresher.

Personal Impact Rating is a 6 point scale based on the overall impact

exposures have on your life, irrespective of what causes the

problems, what type of problems or by how much exposure.

PIR 1 - No impact. There are no absolutes but some people insist

nothing affects them. The only time that is true is when you are

dead.

PIR 2 - They recognize impact and a need to do something but they are

easily distracted. Besides, they can ignore it and it will go away.

And that what all of us should do, they insist, just ignore it. An

example for me was tooth after a filling was replaced. The gum was

sore and the tooth reacted to cold. I'd start to call the dentist but

the phone would ring or I had an appointment or I had to go out of

town. I just didn't get around to it.

PIR 3 - It can't wait, you must do something now. But it is easily

remedied and you can (fairly) quickly get back to a routine. The

routine may have changed - get rid of the mold - but you have a

routine. For my tooth, it came and went for two weeks before it got

bad enough to stop my life and I had take care of it. All it needed

was a bite adjustment and I'm back to my routine. Slight

interruption.

PIR 4 - You have no routine because you react to so many exposure

sources so strongly that you are almost always sick, recovering from

exposures or avoiding locations that have made you ill in the past.

You experience many complaints, many doctors, many diagnosis and many

treatment failures. The impact is disruptive and life altering. The

remedy is life altering. Many in this group are at this level.

PIR 5 - Disability. You are too sick to work or take care of family

let alone yourself. Financial ruin is the rule. A number on this

group are a 5.

PIR 6 - The dispossessed. They are the individuals - three or four

hundred estimated - who can get slight relief only by isolating

themselves from as many exposures as possible. They live outside in

tents or porcelan trailors, sometimes moving to high desert regions.

I've had 9 clients reach this point in the past 19 years. Some of you

have experienced this level.

So the state of the Indoor Environmental quality (IEQ) industry is

now at best a 3 to 3+. A few can help the lower 4s but most avoid

them.

The good news is that 5 years ago range of impact fell on deaf ears

with industry leaders, let alone be rejected. About 4 years ago they

started hearing the concept but rejecting it. 3 years ago a

significant number realized - after extended exposures to mold - that

they weren't feeling well either. They began talking about how they

could identify what calls a " mold plume " based on their physical

reactions.

18 months ago those working on national standards allowed language

into the documents that acknowledged the needs of occupants other

than the obvious immune compromised, elderly and infants.

Last October, as I previously reported, a workshop at the IAQA

national conference in Orlando was a real breakthrough and eye

opener. The 500 or so people, representing the 15 disciplines that

make up the indoor environment, unanimously voted on a straw poll

that health effects must be included in any assessment of the indoor

environment. When I asked for dissenting opinions there were none.

When will we see the results? Those in the IEQ industry are, as you

have accurately observed, just beginning to " get it " but they have a

long way to go. Your participation with that group, the cream of the

crop (with some exceptions ;-)) - has had an impact because of the

manner in which you maturely challanged them. The rest of the

industry will lag behind them. Laws and the regulations may never

happen. The ones that practice " crimes against humaneness " will

always be with us. But hopefully we can eventually get standards and

regulations to compell them to act as an adult and create resources

for those disabled by it.

A " killer " difficulty is that what is needed is not just good

consultants and remediators and it is not just educated doctors.

Solutions require an integration of both exposure and medical

treatment. There is no such discipline or profession doing that -

including public health. That is a primary focus of what I do, but no

one else comprehended it until a couple of years ago. Now there are

suddenly a half dozen in the past few months. It takes time.

Sharon's comments are accurate. The IEQuality group are (mostly) good

people doing the best they can while pushing the envelope with a

focus on preventing expsoures such as stopping water damage before

people can get sick from it. A statement by a former skeptic in this

month's Indoor Environment Connections about mold sums it up

perfectly: " Get rid of the water that allows (mold) to grow, and

remove the fungi using precautions to prevent sensitization in

remediators and occupants. "

Prevention is a huge improvement, but in my opinion, is not enough.

It stops short of their obligation to help those already harmed.

PROPOSAL: Let's continue the dialog with IEQuality by posting a joint

letter from this group. Briefly describe your experience with them,

positive and negative, and then state what you need from them. It's a

risk but it may be worth the challenge.

If someone will take the lead I'll assist.

Carl Grimes

Healthy Habitats LLC

-----

>

> Hi ,

>

> I think you are correct in your statement that by and large, what they

> see is not what we see as far as the ill health effects from

> mold/mold toxins. But, if they understand the initial onset symptoms

> of these illnesses, then landlords, tenants, teachers, etc, will be

> warned early on and will know to remove themselves from a potentially

> hazardous situation. The hazardous situation will be rectified.

>

> So is it important that the good folks over on IEQuality intricately

> understand every aspect of the devastation that many on this board

> have experienced from long term mold exposure? I don't think it is.

> What is important is that they understand that mold/toxins may cause

> illness.

>

> You have to realize they are not medical professionals. When they

> give medical advice, they could open themselves to liability. Also,

> many times their clients that hired them are the ones who own the

> buildings. They are in a tough spot. By giving medical advice can

> sometimes breach their duty to their clients - which could open their

> livelyhoods to liability. To give advice or not give advice can be an

> ethical violation and a potential liability either way.

>

> I would love for these guys to be able to give medical warnings like a

> medical expert, but I realize they can't always do that. And there

> is a chance they will get nailed if they do. And if our ethical

> remediators are gone because the liability is too great, then we are

> all in big trouble. Only the cheap charletons will be left to take

> their places.

>

> So what they appear to me to be doing, is addressing what is

> reasonably in the realm of their expertise, which is to clean up the

> buildings efficiently and effectively. That doesn't help those of us

> who are already so sick, but it can help to assure no others walk in

> our shoes.

>

> The way we are going to lick this problem is to stay on the medical

> community to get the doctors trained how to recognize, diagnose and

> treat these illnesses - no matter if they are in their early stages

> or how severe they have become.

>

> Sharon

>

> In a message dated 2/22/2006 9:43:38 AM Pacific Standard Time,

> erikmoldwarrior@... writes:

>

> Despite the presence of the author of the Personal Impact Rating

> scale, the IEQ group as a whole has no real understanding of people

> actually living at an advanced Personal Impact Rating. Studies and

> statistics using " normal " people as controls do not reflect the needs

> of extreme mold responders and testing cannot address the changing

> environmental conditions in a viable " real time " manner. This should

> be quite apparent. Anyone who manifests a response to contaminated

> articles brought out of a contaminated house is misguided to believe

> that their problems are over because their new environment was

> " tested " . At best, even " perfect " testing can only establish a

> baseline for a pristine environment. Those of us who have tested

> ourselves by temporarily retreating to a pristine environment can

> attest to the ease in which contaminated articles may be introduced

> and alter our 'comfort level' beyond an acceptible response. The IEQ

> list is misguided to beleive that that this phenomenon exists only in

> those who have arrived at a PIR that causes them to complain bitterly

> about contact with possessions. There is no reason to conclude that

> the same " effect " is nonexistent in those who are at a lesser PIR and

> cannot point directly at the source of vague and subclinical

> complaints. As we have seen, people at lesser stages of this illness

> can be identified by those of us who have been pushed to an extreme

> yet they will reject the concept until they become too ill to ignore

> it any longer. It will sound counterproductive that I am expressing a

> lack of confidence in the very people who seem most interested in

> helping and appear to be the best source of information, but this

> oversight means that their concepts would have accomplished little or

> nothing for someone at my level of reactivity. Presumably, anyone else

> at my PIR would also receive information that would only be

> applicable to someone that would be expected to recover by simply

> moving and they would be perplexed at their continued sense of

> exposure and illness. I anticipate that the IEQ member asking about

> studies on attics in foggy coastal climates will not find information

> relevant to his requirements in the IEQ group. -

>

[Guest guest]

Ok Ill bite

Janet

[Guest guest]

Carl and All,

I think that is a fantastic idea. I think it is one that could help us

and help them.

As I see it, right now, they are caught in the middle of whether to give

medical advice or not. There is liability for them either way. If they had

some sort of standardized handout that they could give to landlords and

tenants - which described what early onset mold (or chemical) symptoms may look

like - then their personal duty to inform/not inform would be gone.

There is much info that is already written, like the UConn study. What is

it going to take to accomplish something like that? Does that sound logical

to you? What else would be good to include in a letter?

Do you already have a format in mind?

Sharon

[Guest guest]

You two are something! I don't have a specific format in mind other

than to not make it look like we are trying to tell them how to do

their job or that they are somehow bad guys. But we are adding to

what they could be doing to really help people instead of having to

run away from us. I have an appt now and a conf call after so will

respond more this afternoon. I'll be interested in 's response

and anyone else that cares to participate.

Carl

-----

> Ok Ill bite

> Janet

[Guest guest]

Carl,

You can definately count me in of course and I think as many on this

board as possible should also me interested and be a part of.

Constructive dialogue should work wonders. We are all in this

together and we need professionals in the IEQ to work along side us.

Together we would/could be a forminable group of people.

KC

--- In , " Carl E. Grimes " <grimes@...>

wrote:

>

> You two are something! I don't have a specific format in mind

other

> than to not make it look like we are trying to tell them how to do

> their job or that they are somehow bad guys. But we are adding to

> what they could be doing to really help people instead of having

to

> run away from us. I have an appt now and a conf call after so will

> respond more this afternoon. I'll be interested in 's response

> and anyone else that cares to participate.

>

> Carl

>

> -----

> > Ok Ill bite

> > Janet

>

[Guest guest]

" Carl E. Grimes "

> wrote:

I don't have a specific format in mind other than to not make it

look like we are trying to tell them how to do their job or that

they are somehow bad guys. But we are adding to what they could be

doing to really help people instead of having to run away from us. I

have an appt now and a conf call after so will respond more this

afternoon. I'll be interested in 's response and anyone else

that cares to participate.

- Carl

Carl, I'm PIR 6 except that my military training in biowarfare

allowed me to evolve a strategy that enables me to survive inside

towns by living in-between spore plumes by avoidance and

decontaminating after passing through them. I have been able to

drop down to a PIR 4 by building up tolerance so I can work in a

semi " bad " building by shifting even more effort into compensating

by sleeping in an exceptionally pristine " safe zone " .

One would think that describing myself as a Incline Village

survivor and prototype for Chronic Fatigue Syndrome and that this

strategy of myctoxin avoidance resulting in an amazing level of

improvement would have gained their attention.

" CFS " has gotten to be a fairly well known phenomenon in the last

twenty years, and while it sounds arrogant and presumptuous to

others when I say this, I was there at the beginning, and the story

of the public awareness of " CFS " begins with my cohort.

Prior to the Incline Village " Yuppie Flu " epidemic, the illness was

ignored under a multitude of various names that deniers of the

illness continually divided into meaningless small groups that could

be easily ignored forever.

If you trace the history of " Chronic Fatigue Syndrome " , as Dr

Shoemaker says in Desperation Medicine,

" It began in Nevada, in a tiny community on Lake Tahoe known

as " Incline Village. " It was here, starting back in 1985, that two

observant physicians began to notice a strange pattern of symptoms

in patients who complained of blurred vision, faltering short-term

memory and debilitating exhaustion. During the months and years that

followed, this mysterious ailment (Was it cause by a virus?) would

evolve through a series of ever-changing names: Lake Tahoe Disease,

Chronic Epstein-Barr Virus Syndrome, Yuppie Flu.

And finally: Chronic Fatigue Syndrome, or CFS. "

Since I was one of the original cohort selected by Dr Cheney and Dr

to serve as a prototype to define the parameters of CFS -

when that term of " CFS " was created, you can follow the origins of

CFS right back to me.

If anyone uses the term " CFS " they may be using it correctly or they

may be corrupting it in any of the ways the definitions have been

skewed since its creation, but they can trace the term right back to

where I was standing. That alone should have been more than enough

to get people to take a look at what I was claiming.

If I say where I was, what " CFS " is, and what " The Mycotoxin

Connection " has meant to me, what possible reason can they have for

being so conspicuously disinterested? Especially after Dr Shoemaker

validited my experience in Mold Warriors?

For the IEQ to treat my messages with disdain is tantamount to an

absolute denial to take interest in the connection of biotoxin

mediated illness to Chronic Fatigue Syndrome.

For them to completely ignore my posts that describe a PIR that is

far beyond their methodology is failing to acknowledge that people

living at this " extreme level " is significant, meaningful and

relevant to their purvue. As you say, I guess they must be avoiding

us.

Are they truly helpful people if they avoid addressing the type of

PIR that needs help the very most? If they really wanted to learn

what this is like, why don't they do as Dr Shoemaker has instructed

in trying to learn what they can from the people most severely

afflicted who have valuable clues?

I've pointed out many times that the advice of mold experts and the

top mold doctors is complely unsuited and inadequate to my PIR and

that their concepts would not have allowed me to survive,- let alone

recover to a point where I could have had all the great adventures

I've had.

Even fellow mold sufferers view this as a

counterproductive " slamming " of the very doctors who are most

knowledgeable and trying to help us, when what I've been trying to

convey is that if you are not satisfied with the results you've had,

you may have moved into a PIR that forces you into measures that few

people, including mold experts, have given any consideration to -

but has become a way of life for some of us. As one top doctor

said, " We could learn a lot from you " , but then made it clear that I

was expected to pay him while I was imparting lessons that I paid

for with years of doctor-abuse and agonizing pain. How can someone

diplomatically challenge the views of the experts without making a

clear statement that implies an unspecified degree of lack of

knowledge on their part and an unwillingness to correspond

with " uncredentialed " but very experienced survivors?

If the mycotoxin connection to CFS is concurrent with my

experience, there will be no shortage of people at this PIR level

who will be forced to make serious life changes in order to survive.

As I told Dr Cheney at the beginning of the CFS epidemic, " There

will be vast numbers of people just like me, complaining bitterly

about mold.

There will be carnage. "

Until only recently, people laughed when I said this,

but they're not laughing anymore.

-