reality television show 24 CFS/ME patients move out to desert

[pibee]

cant read all now, but i am willing to move to a desert for this so great idea !!


But I'm not USA citizen so I can be only 90 days, before I need to go to Costa Rica (or wherever?) and re-enter the States again

 

[antares4141]

cant read all now, but i am willing to move to a desert for this so great idea !!


But I'm not USA citizen so I can be only 90 days, before I need to go to Costa Rica (or wherever?) and re-enter the States again

Thanks pibee! I know foreigners get green cards for extended stays if they have work don't they? Wonder if the same could be done for health reasons? I would definitely like to have foreigners so that people would see this illness, just like any other is an international problem.

 

[pibee]

I am not sure I can get a ' medical' visa, for going to a desert

i actually heard m.visa is harder to get than tourist

well frankly 90 days of desert should prove something to me, if i dont get better i'll just leave.

hope you get 25 people or how many you search, would be cool experience

 

[antares4141]

hope you get 25 people or how many you search, would be cool experience

Me too! I think environmental exposure (mold chemicals) is a big piece of the cfs puzzle and would like to make it so that this component can no longer be denied by science.

 

[SueJohnPat]

I like the campground idea. I have slept outside 2 nights in a row now .Last night was tough.
We are moving further away from Philadelphia in 6 days. Wharton State forest is open for camping but there is no one there now and I would be afraid to be in the campground by myself.

I camp in my Dad,s yard. I think my extended family thinks I am nuts but to my face they are polite anyway.
I love the idea of a reality show because you have to see this over multiple days to understand this disease.
This is very isolating.
My husband is in a severe bout with depression so I feel I can’t leave to go out west for awhile right now. I am trying to convince him to take 3 months off and go with me. The mold affected me and my son and I think it affected him but he does not believe me. He won’t go to any doctor except a psychiatrist and does not believe in alertnative medicine at all but at least he is taking the supplements I am giving him.

I agree this has got to be studied . My son has Aspergers, my husbands brother is 56 and has dementia. It is very hard to talk to anyone about this without coming across as a conspiracy theorist . Science needs to back this up. I think the approach is to come up with some miracle pharmaceutical ( and make big bucks) to counteract the envioromental pollution instead of admitting it is a problem and having it cost too much money to correct.

It was really cold out last night by my cfs symptoms really improve greatly if I am outside. Out new home has a shed , I am getting a portable heater and will sleep out there if I have to. Maybe we could form a group and meetup out in the desert for a month or so in the winter. The thought of being on my own away from my family camping is a little daunting. The zoning requirements might make a “ campground “ a little easier.

 

[Seven7]

What are you planning for food ( since you need like organic and food/ fresh food to remove any other factor to the equation.

 

[antares4141]

I like the campground idea. I have slept outside 2 nights in a row now .Last night was tough.
We are moving further away from Philadelphia in 6 days. Wharton State forest is open for camping but there is no one there now and I would be afraid to be in the campground by myself.

I camp in my Dad,s yard. I think my extended family thinks I am nuts but to my face they are polite anyway.
I love the idea of a reality show because you have to see this over multiple days to understand this disease.
This is very isolating.
My husband is in a severe bout with depression so I feel I can’t leave to go out west for awhile right now. I am trying to convince him to take 3 months off and go with me. The mold affected me and my son and I think it affected him but he does not believe me. He won’t go to any doctor except a psychiatrist and does not believe in alertnative medicine at all but at least he is taking the supplements I am giving him.

I agree this has got to be studied . My son has Aspergers, my husbands brother is 56 and has dementia. It is very hard to talk to anyone about this without coming across as a conspiracy theorist . Science needs to back this up. I think the approach is to come up with some miracle pharmaceutical ( and make big bucks) to counteract the envioromental pollution instead of admitting it is a problem and having it cost too much money to correct.

It was really cold out last night by my cfs symptoms really improve greatly if I am outside. Out new home has a shed , I am getting a portable heater and will sleep out there if I have to. Maybe we could form a group and meetup out in the desert for a month or so in the winter. The thought of being on my own away from my family camping is a little daunting. The zoning requirements might make a “ campground “ a little easier.

When I slept outdoors I always went to bed with a hooded sweater so I could keep my head warm. Sorry you have to go through this. It does suck pretty bad. It's a pretty hopeless situation for most of us. That's why I would like to make this thing happen. To bring attention to our plight, with the hope that me might actually get a decent amount of money to put into researching this condition.

 

[E.man]

Not going to make for good tv . Bunch of people laying around suffering.

 

[Lipac]

I'm still toying around with the idea that I put a 60x40' sheetmetal building on a cement slab out in the desert (truth or consequences NM) with 14 8x16' miniature buildings inside made out of metal drywall studs and
Owens Corning
FOAMULAR 1in. x 4 ft. x 8 ft. R-3 Squared Edge Insulating Sheathing: http://www.homedepot.com/p/Owens-Co...uared-Edge-Insulating-Sheathing-36L/100320356

Potentially 24 people could live in it by sharing the cost or paying $250 a month, and sharing each of the 14 8x8x16' spaces. 2 people sharing one of the 14 containers and paying $250, or one person paying $500 for an entire container to themselves.
basically I would put 14 8x8x16' buildings made out of the above mentioned owens corning product and metal drywall studs. (inside of the 40x60' building on a cement slab)

There would be a kitchen and community space on one side of the building and rest room and showers on the other. I would also put a large carport where motorhomes could park for those who need support from family members.

I'm thinking the cost could come down for this or the size of the buildings could go up in the future. My intent is to be non-profit. I took an oath a long time ago never to profit off of anyone with CFS. So I am not sure how I can work this. My thinking is if I can make the initial model work I can duplicate it. I have 120 acres of land in South central new mexico. So plenty of room for expansion. At some point if the model were a success I would like to convert it to a non-profit cooperation or something of that nature. I might have $300,000 of my own funds to initially invest in the infrastructure. My thinking is that I can't afford to have this venture fail. So I'm putting my feelers out. How many people would be interested in moving into a facility like this and paying the above estimated cost's associated with it? With the hope that if the model is financially viable it can be duplicated and 24 more people can move out to the desert. And than duplicated again and again and so on and so forth.

The idea of the reality television is to document the dramatic change in peoples health, make it known to as many people who have watched something like Naked and afraid. It would put insurmountable pressure on authorities to take this condition seriously and to do the appropriate studies to either confirm or deny the existence of environmental illness once and for all. Instead of the business as usual hand waving and rhetoric they use to deny it that we currently have to endure.

@antares4141
Just wondering if you've gotten much response?
Is there medical nearby?
What's the elevation?
Great idea, anyway.

 

[pibee]

Not going to make for good tv . Bunch of people laying around suffering.

yep, documentary at best.


@antares4141 , have you tried in mold FB groups?
25 seems high goal, I think 10 would be good too.

 

[Lipac]

...lol

 

[Lipac]

Not going to make for good tv . Bunch of people laying around suffering.

@E.man best laugh I've had this week. No, don't think we'll get rich or famous, except in a " Brown Town" sort of way. I'd be satisfied with quiet and dessert climate and a secure roof and bed.

 

[Lipac]

I do live in a Co-housing community, but it is quite different from what has been proposed above. We did use all green building materials, have solar panels, rain barrels etc., but the homes were not specifically designed for those who have severe sensitivities--though most who live here have mild sensitivities and things like pesticides and non-green cleaners are prohibited.

There are zoning problems to deal with in most communities as this type of cooperative community living where shared ownership of some of the land is not something most zoning laws are used to. But it is worth it if you get through the red tape as coorperative communities provide a friendly and helpful environment. Everyone here is willing to help another community member in need.

@Sushi just wondering how you found your living situation? Or are you young and we're already a part of a group that did this together?
I lived in Portland OR but the shared housing movement there is mostly hipsters, not for over 55 with health challenges. Socialization within that group is pretty mandatory ( potlucks, shared meals more often than not etc)

 

[Lipac]

Yes, I'm concerned about this also. One advantage this property is located 14 miles from the closest town (T or C, nm) It is surrounded by BLM land so there would be cattle roaming the area. Of course I can put up a fence.
So as far as zoning I would probably be able to get away with a lot of things I might not be able to do closer to a town and it's residential areas. The other issue is that the BLM has had the area treated with some type of selective herbicide to kill mesquite and grease bushes. That would probably be a deal breaker for lot's of people. It's an unfortunate consequence of me picking this location. That is a pitfall of many areas of this type (BLM & ranching) from the reading I have done. The good thing is that their is no substantial agriculture I know of since it is nowhere near the rio grande river.

@antares4141 just for my own curiosity... Do you have CFS??
That's a whole lotta planning goin on...lol.

I'm lucky to drive 10 miles into Walmart once a month.
Or do my hair.

 

[Sushi]

@Sushi just wondering how you found your living situation?

I moved to the Southwest for the climate. There were no co-housing communities here at the time but a few years later I heard that one was being developed. I looked at it the next day and decided that it was a good fit. It is--though I do have some communal responsibilities...though I also have a group of great people looking out for each other and helping each other when needed. Also a built in casual social network.

P.S. writing this post reminded me that it was my turn to take out the trash and recycling bins. But when I went out to do it, someone else had already taken them out. That is typical of the community spirit that I like so much.

 

[Lipac]

@Sushi really lovely. Makes me feel good to hear your story.
It's nice to hear something other than " my great spouse of 30 years who does everything" or thier grown children who do it all and love them in spite of...

 

[antares4141]

@antares4141
Just wondering if you've gotten much response?
Is there medical nearby?
What's the elevation?
Great idea, anyway.

Still looking for people who have legal expertise, knowledge of do's and don'ts as far as rental housing, code enforcement issues. legal advise on how to protect myself from liability if something goes horribly wrong, advise on how I would get insurance to cover myself in such a unusual situation, video documentary expertise, and knowledge on how to conduct a study and document findings, acquiring volunteer air quality experts to evaluate the homes of the test subjects before they leave, setting up a non-profit charity, etc. I'm thinking of scaling it down a little bit by putting a building on my homesite which would drastically bring down the cost but raise some other issues as far as separating me personally from the non-profit status which is what I would want.

Some of the infrastructure is already there. Water, electric. A smaller building, maybe 40x40 with the lean 2's on each side for kitchen and bathroom. I could squeeze in 8 16x8 units.

I have a contractor who is interested in doing the job and is going to give me a price on the basic 40x40 building.

Being I plan to put it on my existing homesite if the plan fails for any reason I still have a building I can use and don't have to worry about having a much larger one that is sitting empty I would be having to pay taxes on and maintain.

At this point I am still trying to get the funds which will be far less for the scaled down version of my plan.

If it turns out to be successful in that the subjects improve markedly and I have a market for the idea, than I would consider scaling up to the original plan. In addition to maintaining the scaled down version.

Closest hospital is 14 miles away. Elevation is almost 4800'
Thanks for the encouragement!

 

[antares4141]

yep, documentary at best.


@antares4141 , have you tried in mold FB groups?
25 seems high goal, I think 10 would be good too.

I have not. Haven't even visited the mold FB groups. There will be one issue with my homesite. I have amongst other things like a travel trailer, an old Mobile home on the site I had hoped to remediate at some point. It's sitting underneath a carport. Plus a 30x30' garage. Probably going to be a deal breaker for extreme avoiders.

I'm looking more towards those that would be more oriented towards controlling their housing situation. Or in other words the units would be built in such a way there wouldn't be any question of weather there was hidden mold.

I still think this is safe from the standpoint of exposure to mold.
It's more realistic from the standpoint of cost, but many would disagree with this and it's going to be a deal breaker for them.

But I plan on looking into the FB group anyways and thanks for the suggestion.

 

[antares4141]

yep, documentary at best.


@antares4141 , have you tried in mold FB groups?
25 seems high goal, I think 10 would be good too.

Idea is to get the word out, it would be nice if I could make it entertaining. I think somebody who is creative and has experience with television and resources might be able to do this. Certainly not me I have no talent in this regard.

 

[Lipac]

Idea is to get the word out, it would be nice if I could make it entertaining. I think somebody who is creative and has experience with television and resources might be able to do this. Certainly not me I have no talent in this regard.

@antares4141
A few more thoughts:
The elevation would be a problem for many unless they already live that high. There are some threads about people needing days to just get over the Rockies.

Also, regarding video documenting- unless people are young and naturally very attractive, a good number of us women can't do our hair, sometimes don't even brush our teeth. Not sure we would want to look like crap on a video!

You might do better with an all male colony for several practical reasons- frail women have safety concerns living with strange men, and not many over 50 would want to be in such an isolated setting I don't think.
(I would live with a group of retired nuns , no problem.
I don't think I'd feel the same about a mixed group I don't know out in the desert.)
Don't think thier families or children would be in favor of it.

It seems ideal for men though.
Men don't do well living alone as they age anyway- stop socializing, poor nutrition, do too many dangerous things alone because they don't ask for help, etc.

Women tend to seek help more, and eat better than men.