Speaking of the desert...who here has went there and how long did you stay for before improving?

[Hip]

Speaking of the desert...who here has went there and how long did you stay for before improving?

Jesus.
Stayed 40 days and 40 nights.
Greatly improved once satan left.

 

[frozenborderline]

Jesus.
Stayed 40 days and 40 nights.
Greatly improved once satan left.

You jest, but I've considered bringing this up to my Christian family members when trying to explain my crazy treatment

And I went to a monastery in the remote high desert of northern new mexico and the outdoor air was incredibly healing there, although the living quarters and church were somewhat moldy ...

 

[Hip]

And I went to a monastery in the remote high desert of northern new mexico and the outdoor air was incredibly healing there, although the living quarters and church were somewhat moldy ...

Some years back, when I tried fasting as possible treatment for ME/CFS, I did 2 months of juice fasting, at about 700 kilocalories per day. But for a few days in the middle of that juice fast, I tried going down to a pure water fast, with zero calories.

On the pure water fast, I noticed this amazing altered state of consciousness. I felt a bit weak because of the complete lack of calories, but my thinking processes changed dramatically.

Instead of seeing the world from the usual egocentric perspective that myself and most other humans have by default, I started viewing things in terms of their significance or importance to humanity as a whole. It's not that my intelligence changed; just that my conscious perspective shifted from a me-centered one to a whole-of-humanity-centered view.

I realized then exactly why the biblical prophets would go to fast in the desert, to achieve this change of consciousness.

I wish I had discovered these consciousness-altering effects of fasting before I developed ME/CFS, as I would have loved to explore them. But as you know, once you have ME/CFS, you feel so crap within yourself mentally, and you lose much of the subtlety of perception, that these sort of explorations of consciousness become a bit futile.

But yeah, if I were healthy, I'd love to do a biblical fast in the desert!

 

[Slushiefan]

Would desert living make a substantial improvement?

Would be very much appreciated to have some experiential, anecdotal or even a scientific evidence evidence for this.

My cfs is sever to moderate. I do manage to work by spending 20 percent of my time daily on health treatments (yoga, meds, napping,.research, etc). Almost all my time is spent working and the rest I spend on treatments, sleep, eating... It's our cross to bear.

I live in the bay area and I truly love it here and don't want to leave. But, when the weather is warm and dry I notice a significant improvement. It very quickly gets worse again within a day when things get humid.

This leads to the obvious question, would moving to the desert help cfs? How much if so? And most importantly, would that still be true long term, over a period of years?

Truth is I have had this disease all my life really and I am mid 40's. Sadly I can see with certainty my 13 yr old son also has it. I owe it to him to exhaust every avenue. My wife and I both work remotely, and now my son also has remote schooling next year. The time seems right but really want to know re: long term.

Please report any evidence? Thank you.

 

[marlunette]

@Slushiefan The illness seems to be so unique for everyone that it is impossible to say whether desert living will help you or for how long. It also depends on where you go in the desert, and what the underlying triggers are for you. That being said, the bay area is notorious in the mold avoidance community for being very bad for health.

There is also a long history of people moving to dry and hot places to treat chronic illness. I'm in Phoenix now where there is a neighborhood that traces its history back to being a place where people with Tuberculosis would live. Going to dry western states was also a treatment for neurasthenia way back in the day.

Anecdotally, I've met people in Phoenix who moved here because of chronic health issues that they couldn't figure out a treatment for, and then got better here. It certainly made a huge difference for me. Before I moved here I lived in Seattle and I worked full time but I spent all of my spare time on treating my health, similar to you.

Moving to Phoenix didn't cure me completely but it made a huge difference in my health. Reading about Location Effects and mold avoidance through all of Lisa Petrison's amazing work helped me to understand what might be happening and it helped me construct experiments in my own life to figure out if living somewhere dryer would work for me. Julie Rehmeyer and Jen Brea have also written about their mold avoidance experiences in quite helpful ways.

It is absolutely worth exploring in my experience, and it is fortunately something you can test for short term affects by traveling to the place you are thinking of moving. I can tell you that I am just over a year into living in Phoenix and I am doing quite well. Anecdotally other people who move to the desert also seem to do well long term unless they encounter some new environmental trigger, like a moldy house.

 

[Slushiefan]

@Slushiefan The illness seems to be so unique for everyone that it is impossible to say whether desert living will help you or for how long. It also depends on where you go in the desert...

I really appreciative your response... very helpful thoughts which parallel my own.

 

[frozenborderline]

Would desert living make a substantial improvement?

Would be very much appreciated to have some experiential, anecdotal or even a scientific evidence evidence for this.

My cfs is sever to moderate. I do manage to work by spending 20 percent of my time daily on health treatments (yoga, meds, napping,.research, etc). Almost all my time is spent working and the rest I spend on treatments, sleep, eating... It's our cross to bear.

I live in the bay area and I truly love it here and don't want to leave. But, when the weather is warm and dry I notice a significant improvement. It very quickly gets worse again within a day when things get humid.

This leads to the obvious question, would moving to the desert help cfs? How much if so? And most importantly, would that still be true long term, over a period of years?

I don't think moving to housing or a city or town in the desert guarantees success. However , I have met very few people thatbhavent had at least some improvement from going to pristine wilderness areas, including desert


We have general maps and lists of good places to do sabbaticals.

The bay area is rated as one of the worst places in the country to live, not just the housing but also the outdoor air. the closest place to the bay area that I can think of that is recommended for sabbaticals is mercey hot springs.

I don't think it has to be desert, I have done well in many forests. Desert is something I take as metaphorical, like deserted wilderness. I've felt bad in certain desert towns and cities and good in the humid forests of west virginia mountains so it's not all about dry versus wet.

I have not fully recovered from this but before I got covid it brought me from bed bound to walking a lot and significant cognitive improvements and stuff. It was the best treatment I've tried so far. But I still had cci and it didn't cure that. So I think I'm sort of an outlier. Many people have gone to fully recoverd but they often need to maintain some level of avoidance to stay recovered it's not just like u go to the desert for a month and then you're back to normal and then can go anywhere without reactions.

Again, nearish the bay area the second place I wanna say is closeish to you and good for sabbaticals is Inyo national forest or ancient Bristlecone pine forest in the eastern sierras. Probably a five hour drive but that's closer than many places in the Western US from you. I highly recommend ancient bristlecone pine forest. The campground there should be opening soon.

 

[frozenborderline]

fortunately something you can test for short term affects by traveling to the place you are thinking of moving

To second this, the ideal way to test this is to do a sabbatical without any of your possessions from home. I didn't exactly do this but my reactions were so clear that I didn't feel the need to test them , but ideally you want to bring no items from home as small amounts of contamination can throw your senses off

If you are too sick to camp and do not have a caregiver who is willing to take you camping, you can try hotel or cabin (like koa cabin) sabbaticals, but these add a whole other layer of confounders, the indoor air could be bad, on top of changing outdoor locations.

When I started camping I was mostly bed bound and had a caregiver, but could be wheeled around and stuff. So it can be possible to do while very sick with a caregiver and it's the ideal season to do it (the low desert is too hot now but many high desert and forested areas are perfect temps and in the winter things won't be so forgiving)

 

[frozenborderline]

There is also a long history of people moving to dry and hot places to treat chronic illness. I'm in Phoenix now where there is a neighborhood that traces its history back to being a place where people with Tuberculosis would live. Going to dry western states was also a treatment for neurasthenia way back in the day.

It's ttrue that people would move to the west to treat their health issues back in the day. In fact that's part of the reason John Muir and teddy roosevelt were such avid conservationists is that the west helped their personal health issues.
But I don't think it's because thesenplaces are dry and hot. There's also histories of people moving to alpine areas or tropical , humid areas for health issues.

Rather I think its bc the west has always been a little less developed than the east, at least if you leave out the coastal megalopolises. This is still sort of true , although we're fast on our way to ruining it like we did with the northeast and southeast and midwest.

Anyway, the point is I think that people with these sets of illnesses tend to thrive where there is good air with a healthy outdoor microbiome free from toxins that we haven't quite identified with science (nobody has tried, really) but that tend to go with civilized areas. And that's the main variable. People thrive in areas of low altitude, high altitude, forested, deserts, dry air, coastal breeze, rainforests. But the common variable is avoiding this nasty stuff that seems to be in civilization.

I guess this may sound wrong to you since Phoenix is civilization but with cities in the desert I'd imagine some are close enough , I have experienced this in parts of vegas, to get desert breezes and feel better than most places. And you may be less reactive than many mold avoiders, which is honestly a great and lucky thing, some can't tolerate Phoenix, although most people agree its better than Tucson and one of the more reasonable southwestern cities to live in air wise.

 

[frozenborderline]

Would desert living make a substantial improvement?

Would be very much appreciated to have some experiential, anecdotal or even a scientific evidence evidence for this

In short , there is not much scientific evidence beyond speculation. I have covered this problem in much of my videos, because it is frustrating that me/cfs researchers have ignored something that has affected our lives so much. It is a catch 22. There is no research, so people consider it a long shot partially because there is no research , and so they don't research it, and there's never any research.

There is speculation though, about why molds in civilization might be worse, backed up by a few papers. You can search this forum for "nanoparticles" and "mold" to see some of the discussion we've already had. I guess the thing is, I wish there was more than anecdote, and I believe research would strongly back up an environmental connection, but this area of research has been substantially neglected


I can explain the volume of anecdotes though and why I came to believe in the environmental theory despite at first only valuing that which has been demonstrated in the scientific literature.

When I first watched Unrest I was mildly or moderately Ill and I had more faith in the scientific process to self correct and lead to a cure for me/cfs, not realizing the lack 0f funding, etc. And how scant the replicable research was. So I scoured the literature, taught myself cell biology, went to an me/cfs specialist who was highly regarded. and tried supplements and treatments both recommended by that doctor, and gleaned from ideas I found in research. When I saw the mold avoidance part of unrest I was so unconvinced that it would be hard for you 5o believe I'm the same person who is evangelizing about it today. I wish that I'd known more about it and not dismissed it back then as I strongly believe it's far eeasier to do and start and get momentum when you're less sick. (For example, I don't think mold avoidance can usually heal severe cci, even though mold can cause the inflammation that can lead to having it, it's hard to undo once you have it).


Eventually I learned that with the literature being so scant, going based on anecdotes 5hat I found plausible (eg real recovery stories from real people, not like these weird anonymous ones that the lightning provess people post), and also ones that don't downplay the downsides or difficulties , were really more valuable than trying to glean treatments from the existing literature. Like julie rehmeyer points out, the people conducting mold sabbatical experiments were sort of like the "guerillas" of the scientific method, they were working in unofficial ways and not backed up by institutions but were able to work ahead of and faster than the slow pace of the current science. And while anecdotes on their own aren't science per se, they were building a body of anecdata and general observations that was huge , and trying to get scientists to study it

I feel the same ways about cci, despite not having a single paper in the me/cfs literature supporting its connection to me/cfs, the anecdotes were plausible enough I figured it would be worth investigating. And again, the preference toward good anecdotes is because the existing scientific literature is in such a state of shambles that it's basically impossible to glean much from it at all, beyond that me/cfs probably involves some hypometabolism and hypo perfusion of the brain.

I can go into more detail later. Right now I'm tired, not really bc mold avoidance has failed necessarily, but covid is a whole other beast, that even messes with your body even if you're in pristine air, and I've been dealing with that for two months, on top of craniocervical instability etc. Dm me if you want to see any of 5he videos where I discuss the science, my journey and all of these topics. We're not suposorf to post videos here bc they're harder for mod teams to vet. I don't underplay the difficulties or overhype the benefits of this lifestyle, but it produces results even in patients as severe as me that have other comorbidities like cci, by virtue of good air having such a profound anti inflammatory effect

 

[marlunette]

I guess this may sound wrong to you since Phoenix is civilization but with cities in the desert I'd imagine some are close enough , I have experienced this in parts of vegas, to get desert breezes and feel better than most places. And you may be less reactive than many mold avoiders, which is honestly a great and lucky thing, some can't tolerate Phoenix, although most people agree its better than Tucson and one of the more reasonable southwestern cities to live in air wise.

I am definitely lucky that I can tolerate Phoenix and I recognize that many mold avoiders can't. I think that Erik style mold avoidance and sabbaticals are incredibly important and useful, but at the same time, I don't think it's clear that every person who feels sick in the Bay Area is necessarily having the same mold issues that require that level of avoidance. For some people it might just be the locations effect of living in a damp and polluted place.

To be clear, there are probably a lot of people who would benefit from mold avoidance, and I think anyone who has any reason at all to suspect mold as an issue should try Erik style avoidance if they can. But at the same time, I have met a lot of people that feel better by going somewhere dry or high altitude without any doing any mold avoidance. I think it's worth thinking about location effect independently from mold avoidance, especially for more mild cases.

Since getting a job in Phoenix, almost everyone has asked me why I moved here, because my old job was seen as more prestigious. I'm quite open about it being for health reasons, and what I have found interesting is that so many people respond by telling me about their friend who moved here because they felt better. I have also met a few people who told me they moved here because their autoimmune issues feel better or their vertigo clears up. None of these people are doing mold avoidance sabbaticals or purging their belongings - they just move here and feel better.

As you have described, mold avoidance is life changing and potentially life saving. It's also hugely disruptive, which makes sense as a trade off when you are too sick to work or have any semblance of a normal life. The person who posted the question said they are able to work full time, with a lot of treatment to manage the illness. In my experience the trade-offs for pursuing mold avoidance feel a bit different at that point.

For some people, it doesn't make sense to give up their career and leave civilization to get from 80% to 100% functioning. At the same time, moving to Phoenix or some other dry, hot city would allow that same person to keep working and maybe get to 90 or 95% without sacrificing too much.

 

[frozenborderline]

I am definitely lucky that I can tolerate Phoenix and I recognize that many mold avoiders can't. I think that Erik style mold avoidance and sabbaticals are incredibly important and useful, but at the same time, I don't think it's clear that every person who feels sick in the Bay Area is necessarily having the same mold issues that require that level of avoidance. For some people it might just be the locations effect of living in a damp and polluted place.

Well it makes some sense, like I said mold avoiders that are experienced have said that phoenix is better than Tucson and better than Los Angeles, maybe even better than Albuquerque...

To be clear, there are probably a lot of people who would benefit from mold avoidance, and I think anyone who has any reason at all to suspect mold as an issue should try Erik style avoidance if they can. But at the same time, I have met a lot of people that feel better by going somewhere dry or high altitude without any doing any mold avoidance. I think it's worth thinking about location effect independently from mold avoidance, especially for more mild cases.

My point in this whole speech was not to tell people how to live or to throw all their possessions out. You're right that people can sometimes benefit from more moderate avoidance.

But what I wanted to do was clarify that I don't think the environmental thing that's a problem in this illness is all about whether it's cold and wet or hot and dry.

And the other point of doing a sabbatical Erik style, is you don't have to commit to the whole lifestyle, but you can feel more sure about whether you ruled it out as a problem or not, it's a more controlled experiment.

For example, a lot of people don't feel better just moving to a random desert city or town, and then they dismiss the idea that environment matters at all. But they might do better in the wilderness. In my case, when I got to new mexico we were in some random moldy Airbnb in a town with bad desert cyanobacteria, and I felt worse than I had in the mountains of west Virginia, and thought it might have been a mistake to go out there, until I experimented with camping in more pristine wilderness parts of the west.

So I could've just had a bad experience and thought that this didn't apply to me if I didn't try some level of Erik style avoidance and just stopped at moving to a random house in some western dry city.

I don't know exact percentages of people who are sensitive enough they need wilderness air, even for a short period (Erik took months to recover and detox enough that he could move back to civilization) , but I think its significant enough to be a consideration for anyone doing this. I'm not saying people should abandon all their possessions and live in the wilderness. I'm saying that they will have a better shot at a controlled experiment if they do this for even a week or two , especially if they follow lisa and Erik's advice. (Lisa, for example had pointed out that all the maps we have and place recommendations are imperfect, just touchstones, so an ideal sabbatical would be a few weeks of wandering, initial location and backup location in same general area ... )
Anyway I'm sure this theory doesn't apply to some, but the point of a strict sabbatical is to try and rule it out. Whereas if you do something like move to tucson or Albuquerque and don't recover, you just spent time and money for something that didn't give you clear data.

For some people, it doesn't make sense to give up their career and leave civilization to get from 80% to 100% functioning. At the same time, moving to Phoenix or some other dry, hot city would allow that same person to keep working and maybe get to 90 or 95% without sacrificing too much.

True. Well I was at the point where i thought i would quickly become as sick as whitney dafoe soon ,and didn't have a career. Even with SSI though it's alltoo expensive. But it's not really a choice. My body was declining a lot more since i did this. Since i got covid in March i have been a lot sicker but "extreme avoidance" before that brought me from bed bound to walking a quarter of a mile and reading/talking a lot without crashing, repeatedly. It wasn't enough on it's own, but I couldn't have gotten progress like that without going to wilderness areas. And all of that isn't necessarily mean uprooting your life forever. I'm sort of an outlier in how hard it's beenfor me to detox and recover. Many people can live somewhere like vegas most of the time and just have to take trips to the nature areas that are so very close. Like thirty minutes away, periodically, to maintain their health, which is not a terrible tradeoff

Anyway my overall point is not to commit to any one method early on, but that one should try and experiment controlling the most relevant variables , and see what they need from that.

 

[frozenborderline]

pristine air here in abiquiu new Mexico

 

[frozenborderline]

Pecos wilderness new mexico , pristine air , photo by my friend

 

[frozenborderline]

Another pristine place, bosque del Apache wildlife preserve in new mexico, my mom went there ... I've been there too, wetlands in central new mexico, great air

 

[frozenborderline]

Pristine air in west virginia, at Blackwater falls state park.

 

[CSMLSM]

Hi I have only read the thread title I apologise.
I also do not live near a desert or have been to one, I live in the UK. However I believe I have something relevant to share.
I got great improvements by using a dehumidifier which I believe is similar to your experience of the dryer air in the desert.
In the UK we live in relatively small properties to our friends in the USA (I presume you are there) and when it is cold with all doors and windows closed, heating on tend to live in a humid atmosphere especially if you are trying to use as little money on heating because of low finances and open windows less to exchange the air. We also tend to not have airconditioning or heat pumps which would dry the air I believe.

Anyway sorry if this message is unwelcome I am new and just want to let myself be known and get to know people like me.
Hope you are all in a stable state and functioning enough to cope.

 

[Mouse girl]

I also think how homes are built really can play into how healthy they are. the newer homes with slab foundations and the newer windows, don't let air ciruculate. In my old home with a raised foundation and old wonden window that let lots of drafts in created a healthier environment. I also lived in a very hot and dry part of Los Angeles. Even though the house had some leaks due to old toilet seals leaking, i didn't get sick because of the raised foundation. In a house i rented with a slab foundation and in more humid area, i felt so much worse. it also had the newer window so no fresh air leaking in all the time. I would give anything to go back to live in my old old house that others saw as run down mess but it was amazing. just needed some work.

 

[CSMLSM]

I also think how homes are built really can play into how healthy they are. the newer homes with slab foundations and the newer windows, don't let air ciruculate. In my old home with a raised foundation and old wonden window that let lots of drafts in created a healthier environment. I also lived in a very hot and dry part of Los Angeles. Even though the house had some leaks due to old toilet seals leaking, i didn't get sick because of the raised foundation. In a house i rented with a slab foundation and in more humid area, i felt so much worse. it also had the newer window so no fresh air leaking in all the time. I would give anything to go back to live in my old old house that others saw as run down mess but it was amazing. just needed some work.

Hi @Mouse girl it is nice to meet you, my name is Daniel

I completely agree.
Because we ME/CFS patients have over sensitive nervous systems we react to adverse conditions in a more extreme way than our so called normal counterparts.

Daniel

 

[frozenborderline]

In my opinion dry air versus wet air doesn't matter. Its wilderness and isolated areas , that are best. Even rural areas with deforestation or agriculture are often ruined. True wilderness without agriculture or development is often found in mountains and desert , but doesn't have to be desert. west Virginia is great for example , and have heard good things about the Italian alps. Sea air I bet can be pretty good