If you were to build a house in a community, what kind of house and community would it be?
My partner and I both have ME/CFS/FM and we both have special housing needs. She has mold issues and some chemical sensitivities and I have chemical sensitivities. Both these issues can pose considerable problems when renting or buying.
Three years ago, my partner moved from a mold infested house into what appeared to be a clean one only to have extensive water damage/mold show up. We realized that substandard construction, water damage in the past, using improper building materials, and poor maintenance are all things that could trip us up when renting or buying.
Recognizing this, our attention went to building something we could count on – a well-constructed house that minimized mold and chemical exposures. We don’t know if we’re financially capable of building a small, healthy home – that matter is being assessed – but we’ve been scouring books and the web for ways to build small safe houses. Simply creating the knowledge base for this effort has been a daunting task.
We realized that one way to potentially lower the costs – and be around like-minded people – would be to use economies of scale and be part of a small planned community.
One reason for the blog is to determine if people are interested in being seriously involved in producing something like that; i.e. as potential residents, investors, land-owners, chemical-free housing experts/consultants, etc. Martha and Brian, for instance, can provide architectural designs and/or work as project facilitators or managers.
We recognize that our vision of emphasizing reduced exposure to mold and chemicals may not jive with others. The questionnaire – produced by me, my partner, Martha and Brian – is an attempt to find out what kind of community others would want.
It should be noted that there’s no funding for a community at this point. This is an exploratory effort to see, if a community was possible, what one might look like and what interest exists in building one.
Please take the survey! Warning … it’s a long one!
For some reason the answers to the second to last question are not showing up on the blog. We’re getting them but they’re not showing up. I don’t know why.
Dear Cort,
I have been working on building such a community in western Massachusetts. I have established a nonprofit called CICI, chronic illness Cohousing initiative. If you look up chronic illness Cohousing initiative on utube you will see a video that I made. I have an outstanding board of advisors, fabulous architects and a superb healthy home expert. A potential piece of land with extraordinary views of the beautiful Berkshire Mountain’s has been identified. I’m currently building a website and hope to begin looking for grants. I would Love to talk/connect with you whenever you feel up to it.
Wow. Congrats on moving so far forward Jane. I’ll be in a workshop over the next couple of days but look forward to chatting. Thanks for getting in touch and good luck!
That looks really interesting. Any progress since your post?
Jane,
How can we contact you?
Thanks,
I just started filling out the questionaire. It skipped the questions after the first 3. I am very much interested in this.
If you are not a professional in building a home you do not know what is in the materials. Most sellers do not tell you.
I know we have mold in our home.
Interested in any advice on anything to do other than Bleaching everything.
The living environment is crucial to recovery. I totally support your initive to develope afordable co-housing for people with envonmental sensitivities but have no need for one now. Remember if you have or care for womone with ME/CFS you will likely have carers as well as a range of illness levels.
I offer these thoughts on location and design: The best housing in which I provided care was actually in an older brick built apartment with therefore very even temperatures and double glazing looking into a tree lined pedestrian square in Central London. No traffic noise, Quiet atmosphere a green outlook,( this was a mixed public/private ownership). The extensive grounds had an ‘enviro-award’ so low toxins but urban air is never high quality, although the breeze coming up the River Thames gave is a pleasant freshness. In my experience the best design is single story and living in a communal block has very many advantages. The garden had concrete paths for the wheel chairs.
We had affordable organic food delivred to the door weekly. Cllean shopping is very important but can be difficult to access.
Crucially, we had easy access to all services, including wheelchair accessible access ( some of your cohabitants might be bed/chair bound). The local emergency services knew we were there and had an escape plan and installed alarms, including bed side alarms. They proved very responsive. Remember being disabled or slow and stuck is frightening for both sick people and carers. The local Council provided wheel chair accessible Taxi’s for free
BUT the apartment still had some electromagnetic pollution.
Access: In the London apartment the doors of the communal area opened to allow access to wheel chairs so the carer did not have the problem of pushing the chair and opening the door. But within the apartment the doors need to be wider to accommodate chairs.We had a fully reclining outdoor chair, But the best indoor chair/beds are the ‘lazy-boy’ recliners with big casters fixed to the bottom, and a handle affixed to the back so they can be very gently moved but are also very supportive for the body and if the sick person can move their figures they have finger tip control so the person can shift their body themselves — a tiny but valuable autonomy. But you need wider doors inside. We had to change chairs in the lobby. A task I could not do unaccompanied. I have acer for somebody with an inside powered chair but found it a menace to manage. Give a thought also to accessible showers and baths, higher toilets, and basins with room underneath for the chairs and mirrors tilted so that the chair bound has the little autonomy of seeing themselves and directing their care even if they cannot lift their arms (another little gesture of autonomy).
BUT the appartment still had issues of electromagnetic pollution. Earlier when I still had some of these sensitivities and cared for people sicker than me I developed a rural housing environment in New Zealand that also took into account electromagnetic radiation. You can shield individuals to some extent but the whole environment is also an issue. It was also very quiet and away from power lines.
I moved an old recyled wooden villa with beautiful but untreated timbers onto the site. I had to have the old lead paint carefully removed to avoid contaminating the soil. I chose a green fields site that had only ever been used for pastoral grazing and had never been sprayed with toxins.
Electro sensitivty was as big an issue for me as chemical exposure. I had the house rewired so that you could electrically isolate the bedrooms individually at night. As your co-habitants will be spending long periods in bed this is an important provision. It was single story and I installed very wide verandas so that beds/chairs could be placed in the shade and shelter, but still be outside in the wonderful New Zealand air, and was incredible quiet. Even if they could not open their eyes it was a gentle, nurturing spot, with gentle sounds. Blocking all sounds seems to me a depravation that is quite disorienting.
A young friend of mine recovered there. An artist he had inhaled too much dust from particle board and developed an allergy to pine and especially treated wood.
All the water was collected onsite, but I was never quite happy with the water storage tanks, although I avoided plastic ones. Stainless steel as used in wine making industry, are probably best.
We installed all natural hemp/wool insulation. But Insulation and temperature control was a problem we never solved. Mainly because the wooden walls were not insulate. ( my current old wooden house of the same vintage has insulation in the walls, this make sup for the impossiblity of double glazing in an old or recyled builidng that does not destroy its character. In retrospect the installation of a central heat pump system would have been the answer and economica to run. I was offered a second-hand one being taken out of a small local mall. It would have been ideal and had good air/dust filtering too.
BUT there were drawbacks to the rural location, of which access both to services, carers and to people became an insurmountable issue. Rural locations can be very isolating. And if you do choose a rural environment choose electric cars charged away from the house and NOT diesel pick ups. We once had to transport someone bed-bound to town lying in the back of a diesel pickup, it did her no good. But it did convince the medics that she was actually sick!
In my view the best location is near the centre of a small well serviced, lively town. I currently live in co-housing in just such a location. I am now well, but old and as my energies flag from years of caring I enjoy the company and being able to walk or pedal along the river bank few minutes to town.
And there is a senior consultantnut alternative doctor (very rare) who specialises in treating these obscure debilitating conditions such as ME within easy reach. Now I just have to train my neighbours not to use sprayable toxins and fight off 5G and get rid of the high radiation power meters the electricity company keep wanting to install on the house.
Love your comments. Sound advice. Great CoHousing environment. Where are you located? If love to chat it out. pmmelchor@yahoo.com. ☺
I have environmental sensitivity at highest level to all grass pollens, am strongly impacted by smokey or dusty wind, and my health worsens at altitude. I have moved from a beautiful mountain forest inland community to the coast to be at sea level and benefit from fresh air with cooling sea breezes. Walking by the sea daily is a great help. I will never move inland again
Cort, I need to start over. I apparently hit “enter” and ended the survey on the 2nd question. I can’t figure out how to start it again.
Is this still in the works or did it get sidetracked with COVID?
Got totally sidetracked. I also realized it’s too big for me to take on. If someone else wants to pick it up, though, I can help out. I’m still interested.
I’d love to be involved. I’m now too old, too fragile, too dispirited by the political mess that we have created for ourselves and our children and grandchildren (I live in Australia, we have elected a Trump clone, Scotty From Marketing, or less generously, Scummo [Scott Morrison who prefers ScoMo)
As a biologist with long-standing Lyme Disease contracted in Australia in 1958, initially diagnosed as CFS/FM , I doubt that, at 72, I will live to see anything positive. At the moment, I’m in walking distance of a bus stop, a major supermarket, a good pharmacy and a major medical surgery.
I’ve recently accidentally burned down my garage full of books, cameras and lenses and a lifetime of memorabilia. As a condescension to climate change runs of 40+ degree Celsius days, I rebuilt the garage with full insulation, a maximum of double-glazed sliding floor to ceiling door/windows, maximum ceiling height. Even without curtains, the new 6mx7m room is 10 degrees cooler than the rest of the house.
If there is anything in this that is useful go for it. To my mind we have passed the tipping point and adaptation to climate change would seem to suggest underground housing is the best way to go 🙁 See https://www.smithsonianmag.com/travel/unearthing-coober-pedy-australias-hidden-city-180958162/
Yes Scott Morrison is an immoral capitalistic scumbag defending the coal industry while his country burns.
I do agree with you too that we would need good insulation and cooling in these houses. The heat for ME/CFS patients is unbearable.
Wow Richard – I just love this – “full insulation, a maximum of double-glazed sliding floor to ceiling door/windows, maximum ceiling height. Even without curtains, the new 6mx7m room is 10 degrees cooler than the rest of the house.”
We could use a builder like you!
Australia is teaching the world something isn’t it? This is your future. Hopefully that will be the silver lining.
Australia also can be proud of one of the best internationally-teaching permaculture schools on the planet.
Oh dear, why make this into a political debate?
Let it go….. we are being asked to consider safe, chemical free housing, nothing more.
I too live in Australia and would love to see a similar model of housing here. Minimal chemicals used in the construction of my home and no mould. No roundup used around the property and acceptance by my neighbours.
Sounds like a wonderful idea Cort?
Why make this into a political debate?
Because in at 3 previously-good countries, horrible horrible people at the top are destroying. They are destroying not just their own country, but the world, little by little.
Political? When despicable tyrants are in charge, everything becomes political.
Thank you
I agree. Why make this political!
I live in Wisconsin. Our Republican former Governor, Scott Walker, has destroyed healthcare, education and the environment. Our water is poisoned by mining, golf courses and factory farms. Plenty of manure in Lake Michigan and the water table due to swine and dairy factory farms. I don’t see how you can avoid politics. I have allergies and Multiple Chemical Sensitivities and genetic issues with methylation. Therefore plenty of oxidative stress. Arthritis and fibromyalgia.
Agree about NOT getting into a political debate as NOT everyone is going to agree with it…
Let’s stick to what we can accomplish and how we get there… that is always more productive
Agree Richard! We built a two bedroom unit in my In law’s back yard. We have renovated garden and lots more trees, etc. At 75 i m a former nurse and academic and continuing pt clinical psychologist feeling burnt out by caring most of my life. but we need that extra income. My wife cares for her mother in the main house. her father died last year. When MIL dies, my SIL want to sell the property! So we could be looking for a realistically affordable small property. We spent less than $150k on our place. No property expense. The climate of helping yourself neo-liberalism is dispiriting. I have to leave things for others to do, if they care…
You broke my heart with the loss of your books and mementos. I am so sorry. I’m sorry to about both of our countries political disasters as well (I’m in the US). I used to have hopes of a bright future for me, and for my country. Now I’m just trying to figure out how to survive.
Finally! Underground homes with earth roofs! You bet.
If these can be constructed to be always mold and mycotoxin free…
Richard- On the underground housing–NO on my part. I am extremely Claustrophobic. Yes I know when I die I will be there but not while I am alive.
Interesting though. Thank you.
Look into the idea. See “hobbit houses” online. Lots of large windows and doors!!
I can already see the first potential necessary divide: those who are interested in clean toxin-free housing who are openly ‘woke’, and those who are interested in toxin-free housing who’d prefer it come without the politics.
Genuine question here: will this community be politically &/or ideologically based? There are a lot of conservative minded people, or those who don’t identify with any particular ideology, who also need (or would prefer) toxin free housing.
(I imagine there are even some Scott Morrison supporters (whoever he is – not familiar with Australian politics) looking for clean housing. 🙂 )
All new groups have tough conflicts that often keep projects from getting off the ground. Identity politics and have ripped families communities and all kinds of endeavors apart in person and online.
A rapidly growing group are those who reach across the political divide for environmentally safe living beyond left, right and center (and no authoritarian cults!). A commitment to a “world centric” view with healthy boundaries eliminates the conflict non resolution so often seen in intentional communities.
I am a graduate of about two plus plenty of imploding online ones. So far the suggestions and explorations of the Integral Institute/Spiral Dynamics include offering reason-based teachings in conflict resolution through learning the simple system of Don Beck’s Spiral Dynamics. It makes so much sense to make a habit of deeply seeing where each of us is coming from through this and related systems. Doing so can nip much or most conflict in the bud and help get projects like our safe affordable housing one traction more quickly.
This type of housing community has been on my bucket list for about 25 years, not necessarily for health reasons but like minded residents. I am very interested.
Is there any way to get more info on this? I am beyond interested. Would like to know if they have started anything?Where? If I could come see area? If lots are available? Already know what kind of house I want (tiny).
We just added (after 40 some entries) an age question and fleshed out the locations more adding Australia/New Zealand and the rest of the continent. (Whoops!) You can, however, click on your results and then “Go back to the poll” and add your age range.
Yikes; amazing that no one once mentioned protection from 5G and EMF exposure, long documented to disrupt or destroy mitochondrial function and add to cancer risk when this group may already be in the highest demographic for that!
Please add this info to any survey edits in the future. Thanks!
Btw it might be good to study all the cohousing documents from the last thirty years and from many communities with histories of contention, plus the financial difficulties of said communities. Branding toward healthy living focus is extremely important imo.
Great suggestion Beca, thanks for being on point with this critical piece of the complex chronic illness jigsaw puzzle.
SMART METERS too. Yikes, forgot that one smh. “Murder meters.” See: Dr. Devra Davis; Electric Sense/Lloyd Burrell; Microwave Chasm; Dr. Stephanie Seneff /MIT and more websites, podcasts. This c–p technology has been banned in plenty places in Europe and elsewhere. Millions are holding protests as we speak.
On the question of age, it doesn’t take into consideration the age(s) of whomever would be cohabitating with the person answering the questionnaire. In my case, it would be my daughter, who also has ME, among other things, is 29, and would be living with me permanently. I believe it is assumed the second person is around my age.
Cort, please add the Central Highlands of Mexico. Eternal Spring means low utility bills and less mold. Support services are very affordable. Good medical care is available, to whatever extent medical care is helpful to ME/CFS patients. Pharmaceuticals are dramatically less expensive, as are doctor and hospital visits.
They make house calls. Housing costs are not much less expensive than Texas, but in my opinion they are much nicer for the money you spend. Land is cheaper. Services are much much cheaper, which is a big deal for those of us who need help. Property taxes are nil. Flight to US is 2 hours. Drive to US in 10 hours. And it is actually very safe in these areas. Let’s not leave out one of our two near neighbors. The affordability factor cannot be understated for people with limited resources/income who cannot work. There is a large expat community there already (50,000+) so there is access to a lot of things like English language newspapers and libraries, volunteer opportunities, classes, activities, events, etc. for those who are able. There is an English/expat infrastructure in place to help.
The survey results are not showing up. For some reason this program does not publish them. We are getting them, though.
The big winners – virtually everyone says very or moderately important:
Reducing exposure to toxins
Chemical free housing
Mold resistant housing
Winners – most people want
Maximizing energy efficiency
On the grid
In between
Having a paved road
Climate-wise I would consider Southern NV, UT & CO to be in the Southwest.
Agreed that a drier climite is more favorable for Fibromyalgia sufferers, extreme altitudes can also be problematic.
I could see Utah…If dryness is a theme most of the West is pretty darn dry.
Mold is a terrible problem in Arizona and other dry states too. Seems that in housing, expansion and contraction plus condensation inside walls from temp extremes are culprits in conventionally built or even eco homes.
Modular ecohomes such as ideabox (Oregon, and does not ship west of Colorado so far) can be great; however, the wrong contractor can ruin a great design product and render it moldy. For this community, a Baubiologist/Geobiologist on staff to monitor all homes and land for healthy placement plus mold growth prevention ongoing would be a great idea. Gifted permaculture landscaping would add beauty, inspiration, property value maintenance — plus free food for humans and wildlife, plus tick and vermin prevention!
Utah reportedly has the worst air quality index in the United States
Really bad air around Salt Lake City. I was just there – quite smoggy. I would think most of the state would be good though?
I think it is a great ideal for a community for ME/CFS ?
Cold and high Altitude (breathing problems) is a problem as well as rain/wet climates as such as snow..we are walking barometer (pain) and some of these places you can get snowed in as well..
Personally I love all the states that was mentioned and they have beautiful scenery and view so you have encount what I mentioned above when picking a place…?
I actually do better in a colder, cooler climate. But rain keeps me inside when exercise/walking outside would be beneficial.
Some comments:
If a generous donor provided one house for people to get back on their feet or a safe place for a time.
In line with this idea, perhaps soliciting financial and/or expertise assistance for developing the community from possible “white knight” individuals/foundations who have personal or family experience with ME/CFS, CIRS, biotoxin illness, MCS, mold illness, etc.
Names like Dave Asprey, Mark Hyman MD, Jill Carnahan MD, etc come immediately to mind. I’m sure there are many others who have recovered their health, and found some degree of wealth that they may feel drawn to share to some extent given the right framing and incentives.
Yes, there are many recovered folks out there, including the ones above whom I am familiar with, who are teaching environmental wellness online and in clinics and probably have many contacts who would be willing to donate and invest. Those might include wealthy supporters of Colorado’s Integral Institute, especially the ones who promote Conscious Capitalism in service to all. Integral is a think tank that promotes a vision of humanity that both includes and transcends politics in favor of practical sustainable environmentally sound living. It is not “New Age” though. (For me that’s a positive.)
These donor/investors would be reminded that these new communities serve as models for environmental restoration and healing of humans, plants, animals who are just starting to cave in to the toxic environment that gets vulnerable canaries first.
Wow. There is a great deal of interest, I thought there might be! This can be done. One thing folks can do is to visit “Intentional Communities” website where they have every sort of group living arrangement you can imagine. Based on green building, based on religion, based on hippie philosophy or survivalist philosophy, nudist colonies it’s all there. Any group you can imagine is represented, and these groups are all over the world. But most of them are regular folk just looking for community. And there are interesting descriptions about how they operate, who is in charge, how it is managed, what sort of accomodations and living arrangements there are, what sort of rules would apply, etc. A lot like Cort’s survey, with the answers decided. 🙂
When I first became ill, I remember reading something about a living community for FM/CFS/ME, did not follow up. This was back in maybe 1998/2000.
Always wondered about that one being real or not. Ever hear anything like this before now?
There are places like Wimberley, TX and Snowflake, AZ that are well meaning but have been very difficult to access or unaffordable. Other places exist but there has been stiff competition and waiting lists for decades.
Beca, if you feel comfortable sharing, what is/was the community in Wimberley called? Just wanted to take a look at the effort there, since I live within a half hour of there and frequently pass through it.
About twenty years ago people were moving into the area because they had heard of groups of people being able to rent or maybe build safe housing there. Do not have recent data; there are online groups that keep track of such things and do some networking. Afaik it was not a formal community.
I know someone who knows someone who has all the great resources and wants to do something like this with it. So far in a year no new info on this although I keep asking.
I really like this idea and could serve many purposes. Just being amongst people who understand the depth of our misery that most healthy people cannot, would be hugely valuable. Personally, I’d rather have this come together sooner than later. Perhaps if there were a community building with basic amenities such as showers, kitchen, beds, lounge, etc., people would have a place to organize and could contribute to the cost of this. I’d suggest having parking spots for those who want the option to park a van or such to live out of for those who need more privacy. With that in mind, I’d suggest a fairly mild year-round climate. Northern New Mexico could be an option but I’m sure there are several possibilities. A strong community of like-minded people can take this whichever direction they want but it seems to me that it is more likely to happen once people become connected personally. I’d rather not spend years throwing ideas around on the internet and never actually doing it.
Thanks, Cort, for this idea. I’m excited about the possibilities and I’m willing to contribute what I can to this.
15 or so years ago I tried very hard to get a co-housing community for chemically sensitive people going. People expressed interest but no one was willing to help start it, or to contribute any money to it, so eventually I gave up. Also everybody wanted it to be in a different place. No one wanted to move away from where they were. I wish you luck with this project.
As we get older I would like to see an assisted living building as part of this community that is chemical and pesticide and mold free. Badly needed. Would like to sub it in the Midwest
This is an excellent idea. Perhaps we could aim for one in each of the geographic regions listed. The idea of living with intense heat would be a deal breaker for me, but I love the idea of living cleanly and preserving our beleaguered environment.
I agree, Susan. It may be that the same environment won’t work best for all, and there are certainly enough ME patients to create multiple sites. I can’t tolerate cold weather either. The Reynaud’s numbs my feet and I can’t walk…..but I can’t handle high heat/high humidity either…..
I lived in my church’s retirement community for three years and loved the lifestyle. I only left because I went on a paleo-keto diet and am cooking for myself now. I have built and/or remodeled homes for 40 years and have always made them as environmentally safe and energy efficient as possible. I have discussed an intentional community with others and am currently developing a small subdivision here at my farm. I would try to do something here but I must say where I now live isn’t the best climate…south Louisiana. I would think a mild climate with four seasons would be best. I had a vacation spot in northern New Mexico for 10 years because I did so much better in the dry climate. Rented a house in Estes Park, Co for a month and had to be given a backpack with oxygen so higher elevations might not be good.
I will help out however I can be of use and look forward to seeing how this progresses! Thanks for getting the ball rolling!
As I contemplate this idea I would like to add a couple of other possible requirements; being close to medical facilities (hopefully of a high calibre), having access to organic produce (and other shopping) and being within a reasonable distance of an airport.
As for ‘clean’ places, I think New Zealand is like no other–but then one has to think about immigrations, politics, healthcare etc. if one is–say, from the U.S. or another country.
One could design a community with a shared kitchen/community area like some places in Europe.
This is a tricky proposition since so many of us have other requirements. I suppose one could contract with a ‘tiny house’ manufacturer to build a number of units for people. Or on the other extreme, a batch of folks could pitch tents in the desert! 😉
Personally, I’m just getting too old and lack the energy (not to mention the finances) to take on such an endeavor–but wish you all lots of luck just the same.
Now 20 years ago I would say Tents in the Desert. Not so sure now.:)
I love this idea and don’t know how I could help it get off the ground but am willing to do what I can. I have been moderately ill for a few years with some relapses into more severe, but recently, and I am not sure why, I have been more well. I would love to be able to give back to the community in whatever way I can. Thanks for bringing this topic up and hopefully it will move forward.
Thanks, Cort, for starting this conversation. I’ve noticed in spending time with friends who also have ME/CFS or other debilitating conditions that there tends to be a positive mismatch in our disabilities, so some things that are really hard for me are easy for them and vice versa. It’s so helpful to be on both sides of this exchange and to see what we have to give and not just what we can’t do. I’ve fantasized about a community of sick people who could help each other be more independent and more whole. I don’t have the energetic resources to figure it out how this could work and to think through the potential pitfalls and how to avoid them–let alone to actually go and buy land and build something, so I really appreciate your taking this on.
One thing to add to the mix: Maybe I missed it, but I didn’t see any mention of accessibility in the survey questions. For those of us with very limited mobility, that’s an essential requirement. I currently live in less than 150 sq ft of space, and this living arrangement lets me be a lot more independent than I’d be able to manage in a larger space. (Really small spaces like this are presumably cheaper to build, too.) And, of course, keeping buildings to one story and making access to all buildings wheelchair accessible would be key if you want to make the community available to the mobility challenged. (I realize you can’t make it work for everyone, so I’m not presuming that you will go this route; I just want to raise the issue for your consideration.)
Laura- Good questions.
Thanks for pointing that out Laura – accessibility has to be baked in big time. In fact if this got off the ground we should think of ways to make a house more livable for people with ME/CFS/FM – little things that might go a long way.
This is such a great idea.
A community for people with ME/CFS could also open up possibilities in health care and research. What if the community was in striking distance of an ME/CFS specialist or center?
Finances would be a big hurdle. Some people have savings, some disability, some make money in other ways, But what if, say, we developed a cottage industry that helped sustain the community and provide some income for those interested in participating? There are communities out there that produce nut butters, hammocks, etc. Obviously it would have to be something that doesn’t require a lot of physical labor; maybe it would even be internet-based. Just a thought.
I personally would just like the company. Being able to share ideas, not having to make excuses for my condition, and hopefully being to enjoy life more with like-minded people.
I live on the East Coast, so location would certainly be a thing for me. I wouldn’t want to live too far from my family. But at this point in my life, as my illness has progressed to the point where I can no longer hide it from the world, I might be willing to uproot for a place where I can live openly and not have to make excuses for myself.
I can see the potential. The question is, is there enough momentum to make such a place a reality? So many of us are just struggling to get through the day…would we as a community have the strength and initiative to build it?
Oh yah! Near an ME/CFS center – wouldn’t that be great! Great opportunity for treatment and research.
We’ll see about the momentum but we are getting a good response. I’m just coming up for air after a long, long (but good) weekend and my promised day off. 🙂
I live in NC between Charlotte and Winston-Salem. Hunter Hopkins Center is in Charlotte, and integrative medicine doctors in WS.
My husband and I spent several months at a small very MCS friendly community right on the beach in Florida. It was wonderful. (The owner had severe MCS and was very strict about what was used on the property.)
Many of his renters went on the build MCS friendly homes within a mile or two of this property.
Normally, I would consider coastal central Florida too hot in summer but because of the Atlantic breeze it is quite comfortable expect for the hottest part of the day. (I do not do well in heat or cold).
I wish we could have stayed longer – some renters have lived there for 15 years. Would happily return but he is full.
The support from the owner and his partner was outstanding. I also learned from him quite a bit about building materials, etc so that neither mold nor MCS is an issue.
One big plus there was a place to “air-out” scented items outside of your home despite the weather. A must for me.
Another was a generator for power outages.
Margaret, that sounds fantastic! I too am sensitive to heat and cold! I’d love to hear more about this from you. My husband and I have actually talked about going to Florida in the winter. In North Carolina all our lives but the winters, though mild, are still very hard on me. Thank you Cort for this blog!!
Vicki- C are to share where this place is? May be others in the same area.
I would think an Ideal place to have a place like this would be where there has to be Medical Physicians and facilities to help the people. We own property in Florida. I cannot imagine where you are talking about-I have a Commercial Warehouse in Jax Beach. Covered in Mold. Having to have it comp cleaned out.
Carol and friends, check out Vital Oxide products and foggers. No toxic residue. NONSCENTED AND DOES NOT MASK ODORS. Destroys all mold spores and their DNA, dissolves them into basic salt water/CHON (but not wet). A rival product is Biocide and also stuff from Beckart Environmental; all are chorine dioxide, NOT BLEACH BC IT IS A COMPLETELY DIFFERENT MOLECULE. Nontoxic and pet friendly but always take precautions per individual sitns.
Best to research these solutions. I and other sensitive people disagree with those who say all possessions must be thrown out of a moldy space. Reapplications of the above products may be necessary as often as needed.
Save your precious possessions! Badly damaged stuff might have to go, but the products above are what the pro remediators use.
Great to hear Margaret. That’s very promising. Do you remember the name of the community down there? That’s precisely the kind of guy we would want to talk to. Thanks for the idea of airing out scented material.
I am seeing discussions like this in several places right now. Creating intentional communities seems inevitable for the aging population of sick, disabled and/or sensitive people. But I’m not sure if this works very well for CFS and ME. I think we could have many conflicting sensitivities. For example, some people can only handle so much noise, but many people in the survey want dogs. I could see sensitivity conflicts happening pretty quickly. For another example, some mold sensitive people cannot tolerate entire neighborhoods where there are houses with mold problems. How many of us would be willing to leave all of our belongings behind in order to maintain the pristine natural mold balance in a neighborhood? What would you do if your neighbor says your house has a smell that bothers them, but you can’t smell it?
I do like this idea and I have been thinking similar thoughts also for many years, but every time I work is through and discuss it with other people, the problem of sensitivity conflicts makes it seem like a fantasy. This would take a lot of careful thinking and planning.
I’m wonder if this is more about finding a model for small clusters of micro communities for people with the same sensitivities. Rather than an entire community, Maybe 5 to 10 houses, or a few RV pads. It sounds like we need them all over the place, in different climates, at different altitudes, and for different collections of sensitivities.
I should clarify what I mean by clusters of micro communities. Rather than a single plot of land housing a large community. Just build out clusters of homes for people with compatible sensitivities. Place them around a geographical area so they can share some resources, have some separation but still form a community. Anyway that is one way I have come up with to deal with the problem of sensitivity conflicts.
Sounds great Cort. Have you mentioned this to any of the Immune Physicians? They would be the ones to head out something like this. Maybe even in their area to start?
Sorry Kurt- I put Cort in place of your name. Your Post is great!!!
:I’ve just read all the posts on how “someone” needs to make this a perfect place, in their opinion. I don’t need for it to be perfect and II’ll be responsible for my share. For the people who have considered putting this together, I have a tremendous appreciation for your even trying. Please don’t let anyone stop you.
Kurt if the dogs are an issue then I am def living alone. I own a Ga State licensed Animal Rescue. 🙂
Everything would have to be carefully explained. A community cannot, I don’t think, be a one size fits all thing – it’s too difficult. You’d have to have flexible people in there, I think.
Having been on permanent S.S.D.I for over 20 years, FMS/ME/CFS, & encumbered w/financial hardship along w/needed medical requirements & services, affordable & independent living rental housing is the only option available to me. I’m sure in an ideal world how wonderful it would be to live in the housing which you feel so passionate about.
I think the structure of the organization should aim accommodating the needs, to the extent possible, of the lower income, one parent families, young adults, elderly, isolated, disenfranchised etc.
Maybe the cost structure could be such that the less fortunate cover the minimum costs (marginal cost of adding one more person). They would probably be eligible for public assistance. The community should be eligible for support from government agencies and grants for accommodating them and disabled individuals.
The direct costs of additional facilities and services could born by the more privileged. Additional services could be available for purchase on an individual basis.
Selfish snobbish, elitist people can just go live elsewhere.
Agree with you on the public assistance-but some people cannot wait on this. The elderly-for one. Some of this will take years to a pass. Most people do not think any of what we have which has many entities-EVEN EXISTS. The Elitist will get first choice on anything offered. Just as they can get drugs that the average person cannot afford or find. The Community IDEA sounds great though-Thank you Cort. Sorry to sound negative -but I am a Court Appointed Child Advocate for over 11 years. Hard to even find half way houses for these abused kids.
Great Survey, Cort! THIS is a conversation I want to have with others. Here in the Southeast, affordable housing in a healthy environment is far more of a challenge than it should be.
I also live in the South East. Even harder to find a Doctor unless it is a Naturopathic which in Ga are not licensed. But I have found to be more knowledgeble on everything thing with Immune issues. That is Problem #1, Two is having a beautiful home that is Poison. We have Air purifiers in every room in our home. Thank you Cort for this Survey. Much needed questions and Answers.
Robert Christ
antares4141@gmail.com
https://antares4141.wixsite.com/website
My idea is quite different from the one here. I want to build a community that live in hexayurts. http://hexayurt.com
Want to spray them with cement and make them impervious to weather, fire resistant, low voc emitter, economical to heat and cool. Possibly cover them with some type of temporary tarp that could shield them from water just to add an extra layer of mold prevention and reduce cooling issues like for those who are sensitive to a/c’s and the potential mold issues associated with them.
My idea was to make a documentary or reality tv show which would bring attention to our plight and all those who suffer silently from this epidemic and document things like the homes people came from document the mold they were exposed to. (have it assessed by an expert.) The improvements over time the subjects make if any.
I want to parcel off a piece of land I own or buy a parcel, assign it to a charitable organization. And start the project.
I still have pretty debilitating CFS despite all the measures I have taken and don’t have the energy to get any of this off the ground. Need professional help as well as financial help and physical labor if I were ever to make this happen. I have a post on Phoenix rising that describes a similar version of this.
The main goal isn’t to get an infinitesimally small group of people out of unhealthy mold and chemical ridden environments.
It’s to bring awareness of and legitimacy to this problem. I believe it is a vital clue as to what drives our illness and authorities will have to be shamed into doing something about it. If anything is ever going to be done.
Robert Your idea sounds great. Setting anything up as a charitable donation would work if handled right. What drives our illness is the medical Community in general not taking it seriously. Also research is slow in coming. I have been sick from the beginning since 1987. Then Aids took over the research for our malady at the CDC. There were in the beginning Infectious disease Dr who took it seriously. Dr Richard DeBoise in Atlanta was in on ours from the beginning. Then Aids took over our research as did many of the inf Disease Dr. including mine. So we keep having to start over. All of my Dr have retired and it is hard to redo what I have already done with documentation. Your idea however sounds good.
Thank you Carole
I am in the proof of concept stage right now. I am going to make the foundation out of the sand out here which when wetted and packed get’s so hard you have to work to drive a stake through it. Then it would be a matter of covering it with some type of cheap material. I was thinking remnant tile which wouldn’t work too well on essentially adobe. Maybe Pack the top layer with gravel then smooth a thin layer of cement over it. Everything would be engineered from a cost and effectiveness for the intended purpose standpoint. Which is of course would be cheap, durability, low VOC, and no mold. Idea is a thin layer of cement like they do on some homes sprayed inside and out would essentially make the material into a composite which would make it strong enough to endure the wind out here and hopefully water resistant enough that it would not mold. I might want to experiment with a waterproof coating on the outside and natural sand and porter cement on the inside. At this point I don’t even know if it would work. I’m doing it at my own pace which is slower than I would like. I’m guessing I might have or not have a proof of concept in the next couple of months though. If I succeed I’ll probably post it at phoenix rising under the user name “antares4141”
Hello from my temporary home at a place owned by an asthma and allergy patient org, where a sign on the street tells passers-by to please not smoke on this street at all – surprising things are possible!
Accessibility is important! Should have mentioned it in dealbreakers.
I would also love a community kitchen that could be blocked out for batch cooking, which is a rational approach to food for those in need of assistance for cooking.
Sounds great- What state do you live in?
Me or Kio?
I live in New Mexico, about 100 miles North of El Paso, tx. 14 miles east of T or C, NM. It’s at 4800′ which might be a deal breaker for some. I would prefer lower elevation but was attracted to other aspects of my property, low cost per acre, nobody around to complain about the metal buildings, or hexayurts or whatever else within reason I would want to build. It’s dry out here yes, but I see that as a double sword. With the dry air comes a high airborne particle count. Probably mostly dust but we have other allergens generated from grasses and weeds and the likes.
New Mexico, about 14 miles east of Truth or consequences.
Glancing at the comments here, I wonder if this survey might be a good jumping off point for… multiple communities? Is there a way to group respondents with similar interests (ie, location, or low emf environment?) and put them in touch?
A couple of “Building community” resources I included in the survey as well:
– A site with info on developing more affordable cohousing: Glancing at the blog comments below, I wonder if this survey might be a good jumping off point for… multiple communities? Is there a way to group respondents with similar interests (ie, location, or low emf environment?) and put them in touch?
– The foundation for intentional communities (has lots of good info re legal structures, decision making structures and challenges, etc.) https://www.ic.org
Great idea
Here’s the link I failed to copy and paste above: https://sustainablecohousing.org/?fbclid=IwAR3xLFYVoQnZVz6fZQZEGT7U75w9KTa2Isp46drl8446FcHfXZ60jTO6Wo8
Always thought this was a good idea. The main drawback I see is that most people would not be able to afford it unless it was a community that accepted HUD/Section 8 assistance. I’m happy for the people that have a nest egg or other financial resources from companion, family, etc……………but realistically I would guess that most of us do not have those resources. Curious Cort if this is something that could be considered?
Can I ask another question on a different subject? Specifically, the subject of migraines. My neurologist has suggested a supposedly well-tolerated drug as a prophylactic for migraines, but it is not only off-label, it has not been supported by double blind experiments. The drug is (generic name) memantine. Apparently it’s not covered by most insurance for migraine prevention.
Is it worth trying?
Thanks
For Cameron,
After a nightmare, I went through with prescription pills that almost ended my life I tend to avoid them. I just went through two weeks of almost non-stop migraines and it turned out Soy was triggering them (even small amounts like a bit of soy oil!). For my uncle it is chocolate. He was so bad he was on morphine shots for years until he figured his triggers. Thought I would mention the food link it’s sometimes extremely difficult to suss out food interactions especially when it’s generic like ‘salicylates’ ‘amines’ etc.
Best of luck on feeling better, migraines are hell.
Were you using generics? I would if that could have contributed?
I grew up on a farm and thought I might chime in that dirt roads can be exceedingly dusty and during spring they tend to fill with chug holes in the rain. Anything remotely close to a gravel road is covered in grey dust and it used to make me sneeze as a kid, so maybe just a consideration for sensitive people.
My husband is the household provider and my grown kids live here, but I’m in the PNW … there is no getting away from mold and mildew in a temperate rainforest. *sigh* *sniffle* But I can’t move.
All the best!
Good point. The amount of dust the wrong kind of dirt road can emit when a car travels over it is truly astonishing.
Our daughter moved to Maui, because she thought it was a pristine paradise. Unfortunately, major chemical companies were given rights to plant test plots and spray “whatever”. Birth defects and I suspect other illnesses are on the rise in Maui.
It will be challenging to find a place in the U.S. where there is not a chemical dump, super fund site, toxic waste incinerator or farm chemical drift near by.
In fact, many of these facilities are cited in remote and rural areas where they think nobody will object.
For at least 15 years of my CFS, I had horrible headaches that could go on for several days. Then, one of Dr. Cheney’s remedies worked like magic. The headaches disappeared and, mercifully, have not come back.
The treatment that worked for me was alternating two squirts of intranasal colloidial silver with EDTA (a chelation agent). A combination of these ingredients are now available from Hopinkinton Drugs, but a prescription is required. Dr. Cheney had found that many of his patients were harboring strep infections in their sinuses. The EDTA worked to remove the biofilm and the silver treated the infection.
Affordable homemade solutions can work for sinus and throat infections; many different combos of natural substances can wipe out persistent biofilms (these biofilms may be spread all over and through any body tissues). Persistent biofilms from immune dysfunction can help cause headaches and throat infections plus subclinical viral and bacterial colonies that spread throughout the many miles of blood vessel channels in the body.
Under stress, these toxin loaded biofilm colonies can flare up and destroy tooth roots. root canals and even bone tissue in the jaw over time without one being aware that the damage is occurring until a tooth crumbles or gets a painful infection from its hidden death. Many teeth can be affected at once in a very weakened body.
Many people test for and use combos of colloidal silver, powdered dissolved xylitol, and grapefruit seed extract (just a few drops of this) shaken together. Brave folks have copied the formulas of expensive proprietary formulas in natural commercial products which might include goldenseal and echinacea extract, other substances and even horseradish, ouch. Go easy.
What an interesting idea Cort. I think this is potentially a great new direction for Health Rising that could help a lot of people.
There are a lot of good comments here, with good suggestions (e.g. considering disabled access), and important potential drawbacks to consider (e.g. conflicting sensitivities and needs).
I know time and money – not to mention energy – is tight, but I think with a little tweaking this project could easily be much bigger than just a single community – with commensurate benefits for a huge segment of the population (world-wide) which has been cast adrift. A world-wide ‘community’ of local communities (or individual homes) built on similar principles, perhaps. If there is enough interest, of course.
For instance, as you, and other participants, progress, with some tweaks your process could potentially produce documentation which could be used as models or templates for others to do the same, perhaps on a smaller scale. You could start a large open-source resource/instruction/knowledge repository (a movement) with detailed instructions that others could use, and modify for their own locations/sensitivities/etc…, who could then and add their knowledge back into the repository.
Kind of like you’re already doing here, but with houses and building techniques! 🙂
Also, looking at the survey results, especially the limited resources so many have, makes me realize there are perhaps some smaller scale opportunities in what you’re contemplating as well. My husband and I live in a mold affected house and I have mold-sensitivities, but we love where we are and would like to do extensive renovations to create a healthy home. We had considered borrowing extra to create an apartment to rent to help with finances, but rejected that idea because rental laws here are a nightmare if you get a bad tenant. However, reading your survey makes me think that there might be any number of chemically sensitive people who would love the opportunity to rent in a proven healthy home. And that perhaps one ‘template’ might be for homeowners who want to renovate for themselves, AND create apartments for others with similar needs who financially aren’t in a position to build for themselves.
However, in trying to research how to do this, there is so much conflicting (and fraudulent) information that it makes my foggy brain spin. The information out there is so alarmist – full of catastrophic language – or has such impractical &/or contradictory ‘advice’, that it is paralyzing even just thinking about where to even start. There is almost no step-by-step ‘here are the basics’ *practical* information (that isn’t contradicted by other ‘experts’) out there. Especially for foggy brains. Not to mention that this area is full of fraudsters, scam artists and money-hungry opportunists. Thinking about sinking our savings into something that is a waste is keeping me from moving forward.
I’ve been contemplating creating a skeleton blogsite just to start documenting and comparing the various possibilities and resources we could consider for temporary measures to help us mitigate until we’re ready to renovate (e.g. where, when, and how to use different types of fogging, uv lights, ozone treatment, treatments for treating clothes (ammonia, ozone, uv, etc…), things like ‘safe rooms’ for bringing things into the home (thank you to one of the commenters on here for that great suggestion!!!), etc…
So in my situation, what I could most use would be a ‘community of trustworthy resources, information, and instructions’ to help me do individually what you’re trying to do on a larger scale with community. Beyond a database: with community input where people could say what they did and *how*, including follow-up as to what DIDN’T work, as well as what did.
I know that’s far away from what you’re asking about here, but thought I’d throw that out there in case it inspires any ideas, or anyone else is interested. (Sorry for the long rambling essay – I can’t edit or be concise when writing with brain fog).
I’ve been dreaming for years about building a home that is less likely to grow mold in it. Hopefully some day I will be well enough to try it.
Here is the research I have done so far, in case it might be helpful:
https://forums.phoenixrising.me/blog-articles/mold-free-home-building-ideas.1186/
Hi Forebearance,
I’ve just seen your comment, and have been looking at your resources. Some are very helpful – thank you.
I believe the magnesium oxide panels and Airkrete (also magnesium oxide) is what was recommended in the Toxic Mold Summit by Dr. Margaret Christensen (https://toxicmoldproject.com/, https://www.healthrising.org/blog/2019/01/22/toxic-mold-summit/). I had been wondering where to get more information about them, so that’s very helpful.
Thank you for posting that!
I didn’t need to fill-out the survey because we were able to buy land and build our own healthy, green home. It’s been amazing to have earth block walls, the comfort of radiant heated floors with no blown air, passive solar and solar panels, 100% curated building materials (I fired anyone trying to bring toxins into our house) and clean circulated air and filtered well water. It’s been a dream living her for the last ten years and I wish we had done it decades sooner. I was sick from high VOCs the whole first year in our last house and vowed I would never build another home with toxic materials. It’s a great idea to try and build mold free houses but, even though we attempted to do so, we ran a mold test in our basement last year and found evidence of 3 kinds of mold. As dry as it is down there, we still have mold. Good luck trying to build that!
Sure hope this can go somewhere Cort – I’ve often thought if I ever win the big lottery, which I won’t unless I start buying tickets, 😉 I’d build communities in different sections of the country for those with CFS or other chronic illness. Have massage therapists, nutritionists etc on site. My thoughts were more to simply give folks a place to live who otherwise couldn’t afford it, and also have a community. The isolation so much of us face is certainly not helping our health. Thanks to you and your partner for trying to get something like this in the works.
yes I agree with the idea of massage nutrition physio and other therapists available on site. Great idea. I guess it won’t be happening in Europe but if you get one up and running in the USA maybe a second in Europe would be good. I’d add not on hills, but with slopes nearby to practice walking, and with plenty of trees around, and build as green as possible for climate and environment. You might want to check on people’s common allergies too – I’m horribly allergic to privet hedges, for example!
Survey completed but it won’t submit!
I’m a long time RE Developer, & have a very unique Building Method that would minimize the major concerns for those of us who require ‘clean’ environments! I’ve also got ideas of HOW to deploy this concept!
My wife and I moved into a travel trailer full-time in October, and I’ve made remarkable improvements! A number of steps have gone into the improvements:
(1) Lab testing to reveal CIRS (both genetics and other markers)
(2) Moving out of water-damaged apartments into a new travel trailer (not one of the those with aluminum siding and wooden frames, because they get moldy from condensation inside the walls — get a laminated camper instead)
(3) Having my own space in which to sleep apart from my wife (unless and until I can work through associated childhood trauma issues and my overactive stress response that keeps me from relaxing easily); I’ve basically been chronically sleep-deprived since we married in November 2016, and I’m recovering from my longest and worst flare-up yet
(4) Getting out of the cold. I recently moved to Texas to get away from the long, cold winters in Utah, as many CIRS patients (including myself) have noted worsening symptoms when the weather turns cold.
TBH, steps #3 and #4 were concurrent, since my wife had to remain in Utah to finish her contract as a teacher.
I think the idea of a MC/CFS/MCS community could be interesting, but is probably unnecessary. Once you get out of exposure to biotoxins, your sensitivity to other environmental stuff will probably diminish significantly. Just get yourself into a clean camper and park it in a decent RV park. Don’t pay much attention to the hype coming out of the “extreme mold avoiders” community, unless you just want to stress yourself out even more (and unnecessarily).
Just wondering it any direction is being taken on a possible housing initiative. If there is any community or communities being pursued and where and when. Please post any possible info or how to get in touch with the coordinators. Thank you.
Just one addition thought is we have been seriously thinking of buying our own land somewhere and somehow arranging to buy a Holz 100 home to live in so that I could hopefully recuperate somewhat and live a healthier in good housing.
Thank you sooo much or all your hard work Cort!!
Hey Cort. Did you decide to table the idea of an ME/CFS community, or is it still rumbling around in the back of your head? Is anyone still interested? Would love an update. Thanks!
It’s still rumbling. It got side=tracked by the pandemic – which with all the financial uncertainty – seemed like a poor time to try to start something like that. It could use some help! Interested in helping to get it back on track?
Sorry for the delayed response, Cort. I have family in from out of town right now. If you or a few others were ready to reopen that discussion, I would be happy to take part. I’m not in a place to take the reigns on something like this right now (I’ve been in a pretty rough place with my health in recent months), but I’m certainly willing to help in any way I can with ideas or back up etc. You have my email address, and when everyone clears out of here, I’ll send you some additional contact information.
Thanks Melissa, no worries. Looking forward to getting in touch. Maybe we can set up a small group and try to take this forward. 🙂
Sounds good, Cort. Just shoot me an email when you’re ready to start putting something together.
The Questionnaire, when I filled it out a few minutes ago, would not allow me to complete it with my contact information. Clicking on SUBMIT also failed.
Are you still in search of participants in planning a village?
Please sent me info I can complete and return.
Many Thanks!
I just found this post and it is something I have been exploring for myself. I am a Realtor in the Northeast and affordable housing is a major issue, as it is in most areas. Healthy homes are a must and there are many benefits to community living. I believe there are many ways to approach this idea, including ways to find investors. If this is still an idea that is being considered, please reach out and let me know. I would be happy to contribute in any way I could.
Hi All, the Pillow Writers group (Writing from our ME Lives (through MEAction.net) talked about housing and here is what we ideally would like to think about:
Access to Nature
Access to healthy food; maybe a garden and maybe a gardener.
Huge communal room with several soft couches and zero gravity chairs
animals welcome
colorful paintings on the walls that residents chose
Reflexologist and other body workers invited to come and volunteer
microwaves
dishwasher
Cleaning Help
Good internet
Windows everywhere
no stairs (for wheelchair access.)
near a hot springs
bobbi.gloria.ausubel@gmail.com (facilitator of group)