The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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reality television show 24 CFS/ME patients move out to desert

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by antares4141, Oct 17, 2017.

  1. antares4141

    antares4141 Senior Member

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    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.
     
  2. PatJ

    PatJ far and free I gaze

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    I like the idea and have also wondered how something like this could work. The effects of CFS/ME add some complications.

    Sound sensitivity
    Noise would be a problem in such a condensed space. Considering how noise sensitive some of us can be, especially during a crash, noise reduction/damping would be important.

    Any ventilation or other machinery would need to be quiet.

    Odor sensitivities
    Offgassing and other odors could cause problems for some people. When I moved into a new place last year I asked the builder to use low-voc paint, but I could still smell it a month later. Low, or no-voc products would increase the price but make the area more suitable for sensitive patients. You would also need some time for the place to air out after construction to allow odors to dissipate, even after a thorough cleanup of building materials.

    Another concern is odors from products used by other residents. One person may love scented candles, or a scented cleaning product, but in a small space those odors would easily waft over to a neighbor who may crash from the odors. Any cleaning products used in community spaces would need to be no-voc and safe for sensitive residents.

    Accessability
    Disability features would be required such as grab bars, wheel-chair accessible toilets and showers, wheel-chair height counters, lever faucets and door handles, etc.

    Toilet and shower facilities would need to be individually isolated or gender segregated areas would be required.

    Unit space
    One way to reduce the problem of sound and odor sharing in a small space is to move the spaces farther apart. Instead of a large building with sub-units, have you considered using a bunch of sea-cans/cargo containers? They're already waterproof and very sturdy. It's possible to buy pre-insulated containers with an R-value of R2 to R7. They could be spaced to reduce the chance of odors and sounds travelling between spaces. I don't know how cost effective they would be compared to your current idea.

    Sea-cans would also allow for some yard space for each unit, which would provide the possibility for a small garden and even small trees or hedges for privacy, sound buffering, and a better sense of space to call home.

    Community space
    A communal area would be useful for people to gather, talk, work on crafts or vexatious anti-PACE projects. Maybe as part of the kitchen since that's a natural gathering space.

    Kitchen
    A community kitchen may require commercial fridge, freezer, stove and oven units. Multiple units would be required for redundancy since so many people would rely on them. Or each unit could include a fridge and the kitchen would only be used for food prep.

    Legal requirements
    The community nature of the space probably introduces some legal problems. Shared toilet and shower spaces introduce a greater risk of areas where assaults or inappropriate behavior can occur.

    A shared kitchen may imply shared food storage and the possiblity of theft or even intentional tampering with other people's food. There is also the question of maintenance and liability. What happens if someone burns themself and decides to sue you, implying that you have unsafe equipment?

    This is far outside my depth. Hopefully someone else will have relevant experience. I think @Molly98 and @Sushi have experience with intentional communities and co-op living spaces.

    Entry requirements
    Hopefully people would meet the CCC or ICC criteria for CFS. The PACE and other trials have a problem where the entry criteia may have included people who don't actually have CFS but do have long term fatigue. There is also the potential for fraud from people who are willing to fake an illness so they have a low cost place to live.
     
  3. Sushi

    Sushi Senior Member Albuquerque

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    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.
     
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  4. wdb

    wdb Senior Member

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    To do it properly you'd need a control, so build two separate communities that are indistinguishable but only one of which would special precautions be taken to minimise environmental hazards. The residents would be randomly allocated and must not know in which community they are living.
     
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  5. antares4141

    antares4141 Senior Member

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    Ventalation:

    I'm thinking of the fantastic fans used in campers. Their shrouded so they really move air though a small space like this and really quiet. My plan was durring the summer to put a 20x20x1" washable central aircondition type filter on the opposite side of the units. Cause there is a lot of dust out here, and also believe it or not plant based pollen's like rag weed.



    I'm looking into installing an air condition system that works with radiators like some mostly old fashioned houses have where you have a central unit that pumps cooled water instead of some type of heated antifreeze solution. I want to cool the water at night with a fountain that will cause evaporatin and subsequent cooling, than store it in a large underground container by day for use cooling the units.



    Idea with radiators is they would not get cool enough to form condinsate and the fins would be accessable so they could easily be inspected and cleaned. Air condition really isn't all that nessasary out here until june and than once rainy season starts in july it usually get's cloudy and isn't all that bad. At night even durring the hottest part of the year it's not really all that necessary. I get by with nothing but a fan all year myself. In june and some other occasions when it is hot I just dump some water on my head and let it evaporate and I am fine with fans moving air through my space.



    Outgassing:

    I really like the owens corning pink stuff! Go to home depot and put your nose up to it sometime. Virtually no detectable odor. Conversly the styrofoam sheathing I can smell that easily, so even though it's half the cost I wouldn't use any of it. I am still concerned about the pink stuff possibly causing issues with reactivity. But don't know of a better material besides maybe blocks which might actually be an option. It would raise other issues though such as initial cost and cost to heat and cool.

    I tried making a building out of metal drywall studs and conventional drywall and it's still outgassing 6 years later. And for most of that time I was in denial that it was making me sick. I don't know what's in it but I am pretty sure I react to it.

    I suspect anyone willing to go to the extreme I am proposing isn't going to use any scented products for the reasons you mentioned.



    Accesability:

    You raise good points here and something I need to consider carefully. The accommodations you are proposing would of course raise the cost of the facility and being sued for not providing them could possibly scare me away from going through with this. That, and liability insurance, hazards like snakes, spiders, and scorpions, slips and falls, fire protection, sprinklers, clearly marked exits and any other unforseen thing that could happen.



    Unit space:

    Current idea I'm considering would be a lot cheaper than containers. You would need the ones with the metal flooring which would raise the cost. My neighbor had one and he put make shift insulation it it but he ended up having a heart attack it got so hot in it.



    The 40x60' metal building would have high roofs that would be uninsulated and very draftey. It would also have large 10x12' bay doors so air could move through the building even on days where their isn't that much wind. Their is no comparison between this and the container my neighboor had as far as protection from the sun (and subsequent heating) which is brutal out here in the summer. That's also why I would want a large area of carport that campers could use. It's magnitudes easier to cool a camper that is underneath the shade of a carport.



    Not sure what seacans are. Garden's would be fine, as far as landscaping that's probably not going to happen. Again cost. And my thinking is most people that are bedridden from mold are not going to be too interested in things like that. I would want to focus on more important things like keeping warm durring the winter, cool durring the summer and avoiding the pitfalls of hidden mold in conventional housing.



    Community space:

    One of the ways I plan on keeping the cost's down is for people to share facilities: It would be a lot like a commune, people are going to be living very close, but again my thinking is somebody who is bedridden from mold is not going to mind making this sacrifice to escape it's grip.



    Many might even like it because of the isolation that often comes with this illness. That and the aspect everyone there will have a lot in common as far as this illness and the damage it has wrecked on their lives so I think it would be theorputic to be around others with the same background and future goals in common. I was also thinking all the cooking could be done at the same time like in a cafeteria except catered towards people with gi issues and the associated sensitivitys. It's hard to prepare food for one person with these needs, but if the same considerations were for a couple of dozen people it would become much more efficient process.



    Legal requirements:

    Yes this is one of my greatest concerns. I don't know how anyone can run a business anymore the liabilty is such a big problem. I was hoping maybe if anyone with experience with managing properties and the legal issues could give me some advice that would be great.
    That and anyone with experience in making professional videos. Willing to work for free or at a very reduced rate.
    That and anyone with experience in conducting studies so as much information as possible gets generated, documented and collated properly.



    There is also the issue that the participant's would be giving me something without any compensation. That would be that I want to do a video documentary on the whole process of life before and after moving out of a less than ideal situation. They would have to consider giving up their privacy a donation towards the cause. Because I don't think it could ever generate any substantial revenue and isn't my intent. I want people who are clueless about this condition and what it does to those who suffer to see first hand what we have been through and the hopelessness of the situation.
     
  6. antares4141

    antares4141 Senior Member

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    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.
     
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  7. antares4141

    antares4141 Senior Member

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    This would be optimal but their would be substantially higher cost's involved, difficulty actually being able to blind and placebo control the different units, and possibly ethical issues. But I'm with ya! I would love to do something like this.
     
  8. TrixieStix

    TrixieStix Senior Member

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    I am mostly housebound and I've lived in a tiny house (300 sq ft) for 5 years now and I don't recommend it for anyone stuck inside most of the time. I feel much much happier and relaxed when I stay in a more normal sized home. I can't wait to move into the 1,200 sq ft home we are building. It will be so so so much better for my mental well being.


    "Valley fever" is a risk with desert living as well. Cases of valley fever are on the rise and it's not something you want to get. That alone has steered me away from considering spending much time in the southwest. My ideal desert would be the dry side of Maui.
     
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  9. antares4141

    antares4141 Senior Member

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    Valley Fever according to cdc has 46 cases per 100,000. I'm much more worried about getting chagas which is caused by a protozoa that can cause heart disease among other things. It's transmitted by the kissing bug which is common out here. It seems to be attracted to light so I am careful to run decoy lights at night and than to try to use dim lighting inside of my camper I am now staying in. You also need screening to keep them out. The hide during the day in your house and come out at night and feed on you. So I tape duct tape to the walls sticky side out to try to trap them. They are called kissing bugs cause they often like to feed on your head, upper torso and face while you sleep.

    Also rattle snakes, I've put my foot within striking distance of them 3 times now in the last 6 years. Twice they just tried to get away but once I was actually coming back with a container to catch and release and stepped right over it cause it blended in with the rocks so well and stopped by coincidence within striking distance which caused it to start rattling. I think I jumped in the air which was probably not the smartest way to react. Still didn't get bit thank my lucky stars.

    Also cause it's so dry out here there is much more airborne particles both organic and inorganic in the air. Not sure how much of an issue that is for me but it's a fact of living here. If you stay inside all the time you can avoid it but I can't do that. Not sure how much this affects me.
     
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  10. TrixieStix

    TrixieStix Senior Member

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    @antares4141 from CDC website also... "low testing rates suggest that Valley fever may be under-recognized."


    I know 2 people who have/had it and the treatment was gnarly and years long.
     
  11. antares4141

    antares4141 Senior Member

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    I haven't read about Valley Fever in a long time. I always was under the impression that their were ways to make a definite diagnosis.

    Upon reading again I see it's not that easy and may involve the disease going undetected for years until very defiant symptoms manifest.

    One of the ways they said you could get it is through wind blown dust that has been recently moistened by rain.

    I had read in the past it was mainly from construction so I thought my risk to be pretty low.

    Also read somewhere that it is probably under diagnosed like you are intimating to.

    So if my prior post seemed like an attack or if it seems like I was trying to minimize your concern I apologize for that.

    I'm actually a little more concerned about this than I used to be. I'll probably try to take precautions to stay inside more when the wind is blowing to avoid the airborne dust which their is no shortage of.
     
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  12. TrixieStix

    TrixieStix Senior Member

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    @antares4141 I've read that it's likely a combo of climate changes and increased d
    isturbance of the desert (aka: development) that is increasing the rate of Valley Fever. Increased development means increased disturbance of the soil (dry soil) which releases the spores into the air and drier conditions mean more dust in the air. I also wonder if climate changes are creating a more hospitable environment for the fungus?


    Unfortunately as climate changes become more pronounced biological environmental hazards will grow and spread. One current example being "Rat Lung Worm Disease". It is now in the US mainland and Hawaii and is underdiagnosed (in Hawaii govt is accused of downplaying it due to effects it could have on tourism). It almost killed our neighbors 21 year old daughter this year. It has left her with permanent neurological damage and her life is forever changed.

    https://www.theatlantic.com/health/...alization-brings-brain-invading-worms/522153/
     
  13. Earth Canary

    Earth Canary [banned as spam]

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    I am new to this forum, living with CFS/ME/MCS for about 24 years. I have been looking at coming back out to NM and also interested in possibly creating a community. One thing I really liked about T or C is the hot mineral springs (I used to go to Marshall Hot Springs-- now La Paloma) for great detoxification; you used to be able to also drink the water from the well source. Is your property in the mountains toward Hillboro, or toward the other way (east)?
     
  14. antares4141

    antares4141 Senior Member

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    It's in a small town (which really isn't a town it's so small) called Cutter. In NM of course. Closest town is T or C, about 14 miles west of me. It's actually about 6 miles N or New Mexicos faltering Spaceport America.

    I used to drink the water here but stoped it's so high in minerals I started becoming concerned about it. That and I don't have a filter which would be easy to install I guess. I just decided bottled water would be easier.

    It is amazing you can get water in such an arid environment. Last time I looked a lot of the neighboring areas get on average around 5" of rain a year. It seems like we might sometimes get more than that though. I think one week we got 4". But that was considered a 30 year flood around these parts.
     
  15. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I love the whole idea of this in theory. I've always thought an ME community would be great. I also love the heat. Not so much a fan of being filmed o_O though i can appreciate the idea behind it.
     
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  16. antares4141

    antares4141 Senior Member

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    This is the type of building I am thinking of erecting (attached below) but the lean 2's on each side would be enclosed. One would be for bathrooms and showers, the other side would be for kitchen and communal area. The three bay doors on each end would be for ventilation and heat dissipation. Again my aim is non-profit. The cost's I proposed are just estimates. I would think if I were to reproduce the model multiple times I could bring them down substantially. My goal is to break even.

    This is the way I am living on a much smaller scale. I have a 30x40' building all to myself. So to ask somebody to share a somewhat larger building with 24 other people might be asking too much, 12 might be more realistic.

    I love the lifestyle myself, it works for me. I'm living in a little homemade truck camper myself. Inside of my 30x40' building.
    was living in a drywall building I had made that seems to make me sick for some reason I cannot explain:

    I'm just using it for storage now.
    The idea is that the type of housing I am proposing is designed in a way where there is no possibility for hidden mold, And that has always been my main concern. And also voc's are held to a minimum. Which is the only thing I can think of which caused me to have to have to moved out of my drywall building.
     

    Attached Files:

    Last edited: Oct 25, 2017
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  17. Forebearance

    Forebearance Senior Member

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    Wow, @antares4141, what an idea!

    I would offer a couple of suggestions for you: First have an experienced mold avoider check your outdoor air quality to make sure it is good for mold avoiders. And second, sometimes people who are detoxing hard will physically react to other people who are detoxing hard. For this reason you might need to put the living spaces farther apart.

    If you designated your place as a campground with individual cabins, that sounds like it might be a legal and normal type of thing to have. A community laundry that is located outside but under a roof would be really nice.
     
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  18. antares4141

    antares4141 Senior Member

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    Individual cabins would raise the cost dramatically, also I would find myself in a situation where there is always the possibility of hidden mold. Hence my unconventional approach.
    But as you say "legal and normal" is going to be an issue. I need to consult authorities who license structures for occupancy. I suspect the type of structures I am proposing would not pass. I have lots of researching to do. Also risk, if I build it will people come? And even if they do it would take years for me to pay it off. And than issues of liability. The list goes on and on.
     
  19. Firefly_

    Firefly_ Senior Member

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    I’m of the opinion that if you build it they will come, it’s a fantastic idea that many people would jump on. Not me but my situation is different than a lot in that I live on 33 beautiful acres, made my money before I got sick and my husband is an outstanding caretaker. If not for all that I would be there in a hot second.

    And keep in mind, while you will get some helpful and some not so helpful suggestions and opinions, this dream and the funding of it are yours, so while you won’t be able to please everyone just do what you ultimately think is best.
     
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  20. antares4141

    antares4141 Senior Member

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    Thanks for the encouragement Firefly!
     

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