A masterly retreat is in itself a victory. Norman Vincent Peale
During my years with ME/CFS/Fibromyalgia, I had lots of unexpected experiences. More bad experiences, more frustrations and more heart-breaking disappointments than I care to recall these days.
However, one very powerful instinct I experienced was firmly front of mind, and is being echoed over and over by others that also found a way to overcome ME/CFS/fibromyalgia. In fact, I hear it so often when people tell of their recovery from the illness, sometimes after years or even decades of being sick, that I felt compelled to explore if it’s more than an instinct, but perhaps an important strategy to help people with ME/CFS/Fibromyalgia get over their illness.
I suppose everyone describes it slightly differently, but as I look back, I struggle to find the words to REALLY represent what I was feeling with this POWERFUL instinct. Because for me, it was much more than an instinct, it was more like a calling, or perhaps even a compulsion, a yearning if you like. So here it is; I wanted to run away – to escape!
Okay, run is a strong word – stroll might be more appropriate given my pace during those years. But what was it I wanted to get away from?
To be frank, it wasn’t really a well-considered thought, it was more like an urge. I kept feeling like I MUST leave my home, my family, my life – leave everything and head out into the country, out into the wilderness to live in nature.
I wonder if that sounds weird to you if you have ME/CFS/Fibromyalgia, or perhaps you know exactly what I am talking about. But I have to share how conflicted I felt about this, and yet how plagued I was by this urge for the last years of my experience with ME/CFS/Fibromyalgia.
It’s fair to say that I love nature – I have loved the forest since my childhood – I love the beach – I love the mountains. But you know, I am not necessarily the camping guy – maybe a day or two and that’s always been my limit.
But my urge was to get away somewhere where there was no civilization. No people, no TV, no anything. But besides the fact that I am married and have children, I was faced with the very stark reality that I would probably find it impossible to look after myself and provide for my basic needs. And yet, this urge continued.
I would dream of literally just getting away to live in some cabin (camping in the wild wasn’t going to work for someone too sick to get out of bed a lot of the time). Eventually, this urge was so powerful that my wife and I seriously discussed the possibility and considered our resources for me to hide away for a period of time. How long? Weeks? A month or two? Nothing was ever concrete, it was just an ongoing discussion about how this could become possible.
I never followed through with it, probably due to lack of resources and also due to fear. Given that my symptoms were so severe, that even in the comfort of my home and with the support and care of my wife, coping was difficult – going solo in the wilderness seemed crazy. But there was another fear. The fear that this inexplicable urge to remove myself from the noise, the stress, the responsibilities of normal life and the desire to be alone in complete silence with nothing to do, could perhaps be somehow dangerous for me. In fact, I felt that if I left, I might never come back, and so my love for my family prevented me from going. If I had been single, I wonder what would have happened.
This whole urge is not something I have ever discussed much with others, not during my years of illness, not in the years since I managed to overcome ME/CFS/Fibromyalgia. So why now?
Because I keep hearing others that got over the illness talk about this same urge in one way or another. And many of them have actually followed through. Not in the Grizzly Adams fashion that I kept envisaging, but in a more sensible and still supported manner.
And so I figured the question had to be asked – WHAT IS GOING ON HERE? Is ME/CFS/Fibromyalgia the body’s way of prying us out of modern civilisation? That just sounds weird!
Connecting the Urge for Respite in Nature to Overcoming ME/CFS/Fibromyalgia
In my life, a key question has always been; Why?
Why would people with such a severe physical illness, a syndrome that has dysfunctions in virtually every bodily system possible, want to seek being in nature?
What is it about nature that is calling them? Is it the trees? The air? The smells – what?
Of course I cannot comment for everybody, but in my own experience is was probably more about REMOVING myself from the stresses and stimulation of modern life. Not that I was in a bad environment or anything, the only bad thing about my environment was me and my suffering.
I didn’t want to have any responsibilities. I didn’t want to have to talk to people, pretend to be fine when in reality I was suffering more than I felt I could handle. I didn’t want the sounds, the noise, the TV, the computer. I wanted simple. I wanted …’nothingness’. That’s the only way I can describe it. I wanted not just to stop having to do things, I wanted to stop having to process things. I wanted to stop thinking about things – I just wanted to BE.
So what does all this have to do ME/CFS/Fibromyalgia? For years, I thought this whole thing was just some weird part of my life, but as I pieced together my views about the illness, overcame it and then saw many others also get over it, I started to see that this was connected to the illness. Connected to some part deep inside of me, guiding me back towards health.
The World Health Organisation (WHO) long ago classified ME/CFS as a neurological illness. And whilst long ago Fibromyalgia was thrown into the realm of rheumatology, even the American college of rheumatology now recognises the vast number of neurological symptoms including the central sensitisation involved in this pain syndrome.
Health Rising has shared many articles about research demonstrating dysautonomia in the illness, but regardless of whether you recognise autonomic nervous system dysfunction as the root problem of ME/CFS/Fibromyalgia, the point is that there is a fair amount of consensus that the illness is neurological in nature. After all, we all experience many neurological symptoms, from pain and sensitivities to light, sound and touch – to brain fog, mood alteration and sleep dysfunction.
Clearly the nervous system in ME/CFS/Fibromyalgia is having difficulties processing sensory input appropriately, and so what would make more sense, than reducing the onslaught of information that we simply cannot tolerate?
Brain wave activity in Fibromyalgia and ME/CFS is clearly disturbed both in the waking and sleeping state. A recent study compared the sleeping brainwaves of people with and without fibromyalgia, and detected alpha waves during sleep in people experiencing fibromyalgia, something that normally only occurs in the waking states. (no wonder we feel like we didn’t sleep when waking in the morning).
And EEG studies of the waking ME/CFS brain also show significant differences.
So arousal levels, the way our brains are working and nerves are firing, is clearly abnormal both during the day and the night. (one must ask, do we really need research to ‘prove’ this? Most people with ME/CFS/Fibromyalgia experience brain fog or sleep disturbance!)
Is a Health Retreat An Important Strategy in Overcoming ME/CFS/Fibromyalgia?
Surely that would be a stretch of the imagination. I seriously doubt that if I had holed myself away in the woods that I would have recovered from ME/CFS/Fibromyalgia without all the other things I did to recover.
Would it have helped? Maybe, who can tell?
But when I look at the strategies that I did use, they perhaps reflect many of the experiences that such a retreat would have offered.
When I came to the conclusion that autonomic nervous system dysfunction is central to the illness causing the immune dysfunction and an extensive list of symptoms and further dysfunctions, my research and instinct identified that meditation would likely have a strong benefit. I wasn’t drawn to the process; frankly my brain felt too fried to really make any progress with such brain training exercises, and yet in my state of desperation, I persisted.
Of course, it wasn’t a magic bullet, meditation was one of many brain training and other physical strategies and treatments that eventually allowed me to make a full recovery after nearly 7 years of severe illness. However, to this day I strongly advocate this as an important foundation strategy to help people overcome Fibromyalgia and ME/CFS.
How Meditation Affects the Brain
Given that brain waves are abnormal in people with Fibromyalgia and ME/CFS, we can ask: “What can we do to help normalise our brain function?”
One obvious candidate is neurofeedback, where a number of electrodes are placed on our head to measure our brain activity, and some kind of feedback is given to us (most likely visually), to allow us to train our brain to produce more favourable brain waves. But let’s first look at what we are talking about with these brain waves. Here is a graphic showing the various frequencies:
Another common brain training modality used to affect our brain wave activity, is mindfulness meditation. EEG studies indicate that our brain wave frequencies slow down when we engage in mindfulness medication. Plus, the different parts of the brain synchronize better together. (Many brain disorders are characterized not by damage to a part of the brain but by poor brain synchronization.) So it isn’t just about frequency and arousal, but also about what areas of the brain are active and how they interact. It is about a change in function!
One study found that meditators showed stronger activations in the rostral anterior cingulate cortex and the dorsal medial prefrontal cortex bilaterally, compared to controls. Both of these areas have been implicated in ME/CFS and fibromyalgia. These are areas involved in autonomic function, emotional regulation, cognitive function and memory processing as well as pain processing
So it should be no surprise that meditation has long been used to help chronic pain sufferers reduce their experience of pain and to help people experiencing a high degree of stress to cope better. Given the severity of the illness and the large range of symptoms that we experience, clearly there is much scope for people with ME/CFS/Fibromyalgia to experience benefits.
So What is the Connection Between that ‘Call to Nature’ and Improving One’s Health?
It strikes me that most people that experience the illness, soon come to recognize an aversion to stimuli and an intolerance to stress. Symptoms like sensitivity to light, sound, touch (like allodynia) and even our heightened sensitivity to pain all point to highly aroused overly sensitized brains.
Meditation and focus on the breath has been shown to slow down the frequencies of brain waves. So if meditation can be used to train our brain to be less reactive, and to express more usual and healthy arousal levels during our waking and sleeping states, it would seem to be a good idea for people experiencing ME/CFS/FM. People can also use neural entrainment music (also known as brainwave entrainment), to alter the brainwaves their brains are producing (as measured by EEGs).
But what does being in nature have to do with altering brain wave patterns?
Well, it should be no surprise that many guided meditations also include sounds of nature. Sounds like chirping birds, lapping waves at the beach, trickling of water or the sound of trees swaying in the wind. These are all low frequency sounds, gentle sounds that have a soothing effect on the nervous system.
In order for us to respond appropriately to mental demands, our brains modulate activity and arousal in line with the environment and task at hand. If we need to be alert, beta waves are helpful; if we’re in high response or learning environments, gamma waves are likely to be ideal. If we want to experience sleep, theta and delta wave activity is required.
A brain that doesn’t follow these normal patterns in response to cues leads to inefficiency and frustration when we wish to perform mentally and/or when we wish to sleep.
So a normal functioning brain needs to be able to respond appropriately. Clearly just lowering our arousal, especially if we are already under-aroused, isn’t likely to be the complete answer. Which is why meditation alone isn’t the ‘cure’ for the illness.
It also makes sense to train the brain to respond appropriately when it is called into action and an increase in arousal is required. Being able to tolerate external stimuli and maintain homeostasis and a healing state without extreme shifts in arousal is critical. And so removing ourselves from stimuli that feel uncomfortable and trigger flare-ups surely must be as important as encouraging a reduction in brain arousal levels.
Perhaps the seemingly odd compulsion to get away from all stimuli and to experience the rhythms at frequencies associated with lower arousal and parasympathetic activity actually makes a whole lot of sense. Perhaps, we should all listen more to our instincts!?
Have you ever felt a compulsion to get away from it all?
_______________________________
Dan Neuffer
Dan Neuffer’s six-year story with chronic fatigue syndrome (ME/CFS) / fibromyalgia began with an abrupt onset triggered by a vaccination. His symptoms included extreme fatigue not alleviated by rest, bouts of fever and other flu-like symptoms, gastrointestinal symptoms, night sweats, orthostatic hypotension, allodynia, excessive urination at night, salt cravings, pain and fibro fog.
After fruitlessly seeing dozens of doctors, Dan took matters into his own hands and found a pathway to recovery. He believes that autonomic nervous system dysregulation plays a fundamental role in these illnesses, and that a comprehensive treatment approach is critical; when he found the right approach, treatments that hadn’t worked for him before began to work.
Since Dan recovered he has written two books, CFS Unravelled and Discover Hope and created an online recovery program for ME/CFS/Fibromyalgia called ANS REWIRE.
Check out his blogs on Health Rising here and his website here
This is on the money for me. Thanks for your reflections.
When I had chronic fatigue and fibromyalgia for over five years I wanted to leave, and I actually heard the words in my head as if someone was speaking to me. I was in a meeting and suddenly the lights went out for about ten minutes then I heard…”You need to leave, you need to leave.,you need to leave.”
I had remarried four years earlier and we had put a family of six teenagers together. Need I say more.
I listened to that voice and even though I was weak, I managed to drive to a friends home in California near the beach and each day I sat on the beach or walked slowly through the sand with waves gently nipping at my feet and I began to heal. I also started taking diflucan to get rid of candida and I began to heal. I had tried almost everything and had wondered if I would ever get well.
Today I would find someone who does Elan light therapy and also Emotion Code because they are both so healing. I would also consider Ozone therapy and read the book, “Flood Your Body With Oxygen.”
I have a blog on my recovery and also a Facebook page. http://irecoverdfromchronicfatigueandfibro.blogspot.com/
I have also written a book, “Free Yourself from Chronic Fatigue & Fibromyalgia. Patty Butts, Ph.D.
Sometimes recovery from ME/CFS/Fibromyalgia involves some really tough choices, but I think we should never rush into anything because when we feel so overwhelmed with it all, it’s easy to lose perspective.
Glad it resonated with you Chris 🙂
Great. The idea of illness as a message from your subconscious to your body underlines for me that these ‘rewiring’ approaches tend to work on the ‘I had no idea how stressed I was’ section of the population but they’ve never helped me. We really need to define our disease subtypes.
What did you do to recover from CFS?
Hi Diana
You can read about my recovery from ME/CFS/FMS here : http://cfsunravelled.com/dan-neuffers-cfs-recovery-story/
However, it’s not something I have focussed on too much, because it’s my view that understanding WHY and HOW people recover is more important than WHAT they do. Reason being that we have to tailor our approach and modelling our efforts exactly on what others did to recover is often not quite enough. I recommend you check out the explanation for the dynamics of ME/CFS/Fibro on site as you may find that more insightful.
I burned out in 2014 and found out my nervous system had crashed when I visited renowned healer Seka nickolic in london in 2016. I could walk again after a week of treatments. I also discovered I had adrenal fatigue, something I had never heard of before! But fitted the years I had suffered from low energy before I crashed…understanding this helped.
Over two years ago a friend told me about Anthony Williams and his hay house radio shows. His books, blogs and website. I have been following his protocol and it’s helped so much. He has a real understanding of what is causing the neurological symptoms and how to heal the cause itself…
I would highly recommend all his books, starting with Medical Medium. It’s a remarkable book that has helped me and others.
Who knew that I could heal acid reflux, gout, brain fog, hypoglycaemia, in the two years of following his protocol. My extreme allergies better this year. My adrenals getting stronger, no more pain in my legs.
I think you would find it very interesting given your own insights.
It’s funny I lived in the country when I crashed!
But when I had a serious car accident years before I used to go and lie in the fields and the energy of the earth, that wellbeing and ease, would soothe away the pain.
I think your article is really very insightful. More than you know!
Blessings.
Thanks Dan for your article. Ironically in an effort to better balance my overheated flight/fight response with the relaxation response I recently purchased a meditation program specifically designed to increase theta and delta waves particularly during sleep. A month into the daily meditations my sleep has improved roughly 50% and my pain level from fibromyalgia and rheumatoid arthritis has improved about the same amount. I haven’t yet seen a significant increase in daily energy connected to CFS but hope to see that in the coming months.
I have a regular meditation practice, but am dealing with more sleep disturbances lately. I’d be interested in the title/author of the program Designed to increase theta and delta waves.
His name is Bill Harris. The program is called Holosync.
The website is: http://www.centerpointe.com/v2/
I have listened to guided imagery/meditation for over a decade by other people and it has helped, but nowhere to the extent that Holosync has helped. The program is very intensive with multi-levels which take a number of years to complete. I’ve only purchased the first level but if it continues to help I’ll certainly continue. Warning: this program is time-intensive (30 minutes daily to start, 60 minutes daily after 2 weeks)but honestly, it’s the best part of my day. I listen just before bed. As part of the program, participants get a ton of support(sometimes even when you don’t want it) but for me it is 90% beneficial. I’m not connected with Holosync in anyway, btw-just another cfs/fibromyalgia/rheumatoid arthritis patient. If you decide to try it, I’d love to have your feedback. My best to you.
That doens’t surprise me EC, well done on taking action and doing the work to retrain the brain!
wow could you please link me the meditation programme you bought? I would love for my sleep to improve that much!
Hi Natalie, the meditation I bought can be found at:
http://www.centerpointe.com/v2/
There’s an opportunity on the website to do a free demo of it; Bill Harris also has a free downloadable book. The program itself is a multilevel, multiyear program which builds on the basic level. It starts with a 14 day, 30 minutes per day meditation which expands to 60 minutes per day for the first 4 months. He provides a lot of support both in the form of additional materials and emails. Good luck.
That’s interesting, as a life long meditator it makes a lot of sense to me…If you want to understand the underlying cause of both those conditions please go to the library and get the book “Medical Medium” it will really give you clarity. Don’t be put off by the tittle! Read the reviews on amazon. All the best to you.
A great article Dan, thank you, I can relate to everything you say. I have an overwhelming desire to be in nature as much as possible.
I don’t live far from the beach and now I go there and just sit. I haven’t done that for years. I find peace and calmness there. It is my meditation.
I have had CFS/FM for nine years and have not been working this year. My pain has been reduced enormously and I believe that calming my mind and body with nature and meditation is part of the key to unlocking my healing.
I would love to go to a retreat that was specifically for people with ME/CFS/ME. I dream of getting a motorhome and heading off into the bush or going to secluded beaches, far away from noise, busyness, stress and people who make demands on me.
Hi Susanne,
Thanks for the kudos, glad you could relate to it.
It sounds like you are creating change with your experience and hopefully a turning point in your recovery.
Over time, as we improve, I think we can find ways of taking that peaceful nature experience with us into the normal everyday environment. But even years after being recovered, getting out to nature is still special to me. In fact, I am a complete sucker for nature photos, especially sunsets! 🙂
I couldn’t have described my feelings of wanting to escape any better. When I’m outdoors in nature (away from all modern technology, sights, sounds and odours) I feel free.
At home, and I have been indoors a lot in the last 16months, I feel trapped and in a sort of prison.
Yes, like being so sick isn’t bad enough. I often talk to people staging their recoveries about changing their environment simply to change how they feel about their surroundings, because ‘prisons’ are no fun.
Yep. Totally. I feel best when I can take a break in nature. Stress is poison. Crashing waves and babbling brooks are medicine
For me, with fibromyalgia and a stressful, unfair job in an office, I certainly longed to just get away from all the multiple simultaneous demands on my time and the irreconcilable responsibilities. I stayed in it far too long. When I finally quit, I fortunately had savings and was single – but 33 was a distressingly late age to be making desperate moves like what I did, consuming savings in the hope of eventually rebuilding my life doing something more manageable.
I proceeded to learn piano tuning from two very friendly piano tuners, one in another town where I boarded with him for months at a time. He was very kind and understanding, and I went on lots of gentle outings to beaches, etc with him and his family. I was just relaxing and unwinding and slowly learning something for which the demands on the brain were completely different, possibly even beneficial. I can relate to the desire to just go back to nature. What I did was a good enough step in the direction of mental relief at the time.
I gradually managed to build up enough of an income from piano tuning, to “exist” back in my home town for the next 15 years or so, living with the restrictions of FM and trying out remedies occasionally if I could afford them, which I often could not.
I believe the career I chose was the decisive factor between “existing” with some pride and independence, and total collapse and welfare-beneficiary status. I believe the stories from others with FM who ended up with much higher pain and dysfunction ratings than me. I think they had less options to make changes that reduced the damaging mental pressures.
And like Dan Neuffer, I am now looking back from the position, since around 3 years ago, of someone who has discovered a protocol that brings steady improvement. This reflects also in an income level doubled from 4 years ago and now above national average; and I feel I have prospects of a late-life fulfillment of potential. The composer Verdi really only became famous for his work from his 50’s to his 80’s. Of course I wish I had stumbled on the protocol 20+ years ago.
But even if I ever feel 100% cured, I am not going to go back to a stressful dead-end livelihood.
Hi Philip
Your words sound so familiar, I am constantly having this conversation with people who are recovering or have recovered that simply don’t want to return to an uninspired or unsupportive lifestyle. And often (although not always), there seems to be some grief about all those lost years.
Besides my comment above, part of my protocol would be exercise at the right, low, intensity, and making it as relaxing as possible in its surroundings. I have done a lot of forest, woods and riverside walking.
Not only have I had the urge to escape for a long time, I have also been seriously thinking about how “rest homes” for CFS patients might be established (like they used to do for TB). A place in the country where wholesome food is prepared for you, and all the housework and chores and errands are taken care of, and there is nothing to do but rest, stretch, take walks, meditate, etc. No sounds but wind chimes and birds and wind. No colors but green and blue and white. I’ve been watching and reading some stuff online – including a presentation from a conference in Australia – where they discuss human sensitivity to electro magnetic fields – the microwaves and cell towers and cell phones and wi fi and bluetooth and smart meters etc etc etc. I wonder if our instinct might have something to do with escaping from all that. The other strong instinct I have had was that there is a problem with OXYGEN getting to the brain. The other thing that resonated with me was the Marshall Protocol, in particular, the approach to antibiotic treatment and the avoidance of Vitamin D…….Cheers, Kate
Hi Kate,
I really think those old convalescent homes are exactly what many of us could really benefit from – a place to completely and truly ‘rest’, because being in bed feeling stressed out is far from restful!
Cheers,
Dan
A rest home sounds fantastic! I wish they had something like that.
I run a group called Mold Avoiders that has 3500 people in it now, and the whole group is basically about getting out into the wilderness.
Not to avoid stress. To avoid toxicity!
And there is story after story after story of people getting better by doing this.
A lot better. And the sicker they are when they start out, the more of a difference it makes.
Here’s a good story, for instance.
http://paradigmchange.me/lc/mattson/
For those who actually want to pursue this, the book “A Beginner’s Guide to Mold Avoidance” provides a detailed instruction manual and is available for free.
http://paradigmchange.me/avoidance/
Best,
Lisa Petrison, Ph.D.
So many reasons for getting back to nature – thanks for sharing.
I had a sudden desperate need to physically run from my home. Left a $400,000 home to live in lousy hotel with my small child. We found out our beautiful floors were covering toxic mold in our subfloors.
I run several Facebook groups. “Black Mold Symptoms” was started by a lady who had fibromalgia. Turns out that toxic mold was her real problem. There are thousands in the group now that have fibromalgia and many have found that mold and the many other toxins that come with it are their real issue.
Getting into a new environment and avoiding toxins has done wonders for me and my child over the last two years. I learned most I know from the group Lisa Petrison speaks of.
Have you researched toxins being a huge cause to many with these symptoms?
For sure Sandy, mould can be a trigger of the illness and a part of the reason why it perpetuates.
It’s not just the trigger response, but also allergy and the toxins that are a real problem. I know Evelyn told of her experience with mould during her recovery interview.
That book and your site saved my life.
Lisa,
As you well know, there are also stories of people doing extreme avoidance and not getting well. In fact, getting worse. Becoming sensitive to things they never had problems with. And there are people who have been looking for that ‘good location’ for years and years, and never finding it, because the ‘locations effect’ hypothesis is so flawed, as is the Shoemaker/Erik Johnson ‘protocol’.
And speaking of Dr. Shoemaker, a guy named Valentijn over on the Phoenix Rising forums has thoroughly debunked his ‘dreaded gene’ hypothesis.
And lastly, I noticed your post on Laura Hillenbrand, and it’s worth noting that she improved BEFORE she went to Oregon. She moved out of her house (which might have had a mold problem) 2-3 years ago to a condo in the DC area, but didn’t travel west until this year. That may have lead to further improvement, but you know, maybe it had a lot to do with falling in love, as she notes in her article.
Love can make a difference, just like living alone and abandoned by one’s spouse or family can make things a lot worse.
In 2015, I did an online Mold Avoidance patient survey. Anyone who had done any type of mold avoidance was invited to participate.
It was promoted as widely as possible, in ME/CFS and Lyme and MCS and fibro groups as well as mold groups, with the goal that those who had tried mold avoidance but not succeeded would have the opportunity to participate.
A total of 328 individuals responded.
Here is information about the survey, including a link to the questions asked.
http://paradigmchange.me/survey/
Virtually everyone participating qualified for a Fukuda or IOM/NAM or CCC diagnosis of ME/CFS/SEID. About half of participants were housebound or bedridden prior to avoidance.
Participants were asked to rate overall activity level in the months before avoidance and then also in recent months, using the 10-point scale listed in the questions. Here are the results with regard to number of levels of improvement or decline before vs. after avoidance.
http://paradigmchange.me/wp-content/uploads/2016/08/Overall-Activity-Level-2015-Survey.png
Participants also were asked the following question:
“Looking back, all in all, how do you feel about having decided to pursue mold avoidance?”
The breakdown was:
73% Very glad
13% Somewhat glad
9% Neither glad nor sorry
0.9% Somewhat sorry
1.5% Very sorry
2.8% Not sure
The idea of “intensification reaction” where sensitivities to both mold and chemicals get worse after mold avoidance has begun is discussed in-depth in the book “A Beginner’s Guide to Mold Avoidance.” Typically, what happens is that people begin to feel significantly better in general when clear of exposures, but then react more strongly when re-exposed to problematic substances.
This typically goes on for 3-12 months and then declines, but since this whole phenomenon has not been examined in a rigorous scientific study yet, I cannot promise any particular outcomes. It is all exploratory.
In terms of the survey population, 56% of participants said their chemical sensitivities were severe or very severe before avoidance, compared to 34% in recent months.
I’m in agreement that there has not been sufficient scientific research for anyone to be sure whether HLA DR is much of a factor or even a factor at all in this sort of illness. It was my understanding that Open Medicine was putting some money into looking into whether HLA DR type was associated with ME/CFS, but I haven’t heard yet what their findings have been.
I agree that it seems plausible that Laura Hillenbrand may have recovered to some degree just from moving to a less toxic home within the Washington DC area, and then experienced even more improvements from then moving to a less toxic location.
Some more of the findings of the survey relevant to mold avoidance are discussed in this recent blog post.
http://www.paradigmchange.me/wp/improved/
I have not published the survey results yet in a journal and so am not sharing all of them publicly, but I do have a write-up that I am sharing privately with those interested. Access can be obtained by writing to me at info at paradigmchange dot me.
I agree. Early in this 30 year ME experience I was advised to ‘Dart out and come back again’ which I did, to actually leave when married with 3 children was impossible. Yes meditation, darting out, rest, anti-fungals, gluten & yeast free food and unpolluted air were essential, difficult to find in a big city. Extreme sensitivity to foods and chemicals makes socialising not an option. Night sweats and insomnia yes. I am always surprised that so few people mention sensitivity to smell, although I am much improved perfumes and chemicals are still something I need to avoid, especially when no-one else can smell anything!
I used to feel like I was some sort of bloodhound – even after I recovered, I retained a VERY keens sense of smell!
Those that get mold poisoning get chemical sensitivities. Makes everything snell super strong.
I just can’t back from a ” retreat ” in Death Vallley.
We found mold in our home ( – little bit no one else is sick but me) . I had extensive testing 2 day exercise test done twice and had confirmed CFs.
I started on cholestyramine ( a bike acid sequestrant that helps pull mold into the bowel)
I feel like myself again for the first time in 7 years. I have my life back.
I also felt the need to ” run ” away. I went to Tacopa California and stayed at a great Airbnb and b called The Second Wind. It was a wonderful healing experience.
I had begun to feel better prior to going away . I detoxed with chlolestyramine and coffee Enemas ( weird until it works)
I am an allopathically trained pharmacist and before this worked I would have thought it was crazy but the results are that I can think straight and actually hiked a three mile hike in Death Valkeywith no payback.
I cried tears of joy after this.
I also met someone who had to limit his exposure to electromagnetic fields.
I often felt that we should bring back rest homes in dry areas with low mold and electromagnetic fields, in as pure if an environment as possible.
Congratulations Susan!
Thanks for passing this on. Did you do the thing where you don’t bring your old clothes with you?
Do you think this means that detoxification is a huge problem for us or is it something else?
What are your next steps?
I posted your comment on a thread on the Health Rising Forums – I hope that’s all right. https://www.healthrising.org/forums/threads/death-valley-works-for-another-person.5063/
H Dan,
Really Interested to know what vaccination you believe may have triggered your illness? My daughter has been ill now for almost 8 years after a vaccination reaction, then picking up a virus. She is now only 20 and almost a recluse due to getting overstimulated with people, noises etc. part time Uni with little prospect of a useful working life unless this resolves. We are in Brisbane.
Your concept of meditation rings true for me and it has been suggested to her to try but there is no interest at this stage. She does not see that there may be a benefit. I shall continue to politely lobby her!
Hi Linda
Nice to hear from someone fromt he same neck of the woods! 🙂 Well, I had the chicken pox vaccination, but have heard of people getting triggered by many other types.
The key is understanding the framework and dynamics of the illness that puts this and so many other helpful treatments into perspective. Without that, I personally probably would have been the same as your daughter. That’s why I focus so much my explanation for the root cause on my websites.
Heh Dan,
Wondering if you reported this adverse reaction? I tried to report my daughters reaction almost immediately. she had Hep A/B combined shot. Called Twinrix from memory. The travel place that administered the shot were seriously ‘uninterested’ in recording the reaction. Did not even really want to know about it!
Perhaps vaccination as a catalyst of chronic disease is more prevalent than we think. I know vaccinations are an emotive issue and the debate has salient points on both sides, but if we fail to report these responses to the vaccination manufacturers things will never change and the numbers affected will continue to increase.
A vexed issue to be sure but perhaps the best to hope for is that manufacturers can adjust the contents to make them safer.
Whilst my daughter was still quite unwell after the first vaccination and subsequent virus she attended school to see friends..fatefully, the council was on deck that day for the first of the HPV vaccinations…..despite her haggard appearance, dark eye circles and wearing a jumper (i.e. Pullover for non-Australian readers) in summer…. they deemed her an appropriate subject for the HPV vaccination. It has been an excruciatingly long 8 years since then. She is thankfully semi functional however I suspect that that is due only to the fact that at the outset of this illness she could rest etc. eat well, only attended essential lessons and I became the taxi driver for 5 years of shuttling in and out to school more than once a day so she could sleep between essential lessons. I now still take her to Uni quite regularly.
Whilst no one can unreservedly say, “it was the vaccination” the links are strong and perhaps there should also be discussions along those lines? Not in an effort to apportion blame, but perhaps prevent further damage to others. What do you think?
Hi Linda
I appreciate your points, but it is a highly politicised and heavily lobbied area.
With regards to ME/CFS/Fibromyalgia, my experience is that there are usually multiple factors at illness onset, and the vaccinnation is often the last straw for the immune/nervous systems.
Whilst the issues you raise are really very valid, I wonder how much preventative changes can really be achieved here in terms of others getting ill. Perhaps the best focus of our energies is to direct them towards recovery and understanding WHY the vaccinations were an issue for the individuals in quesion. Hopefully you will find my explanation around how triggers like vaccination lead to ME/CFS/FMS helpful.
PS: I don’t think I did report it, because strangely enough I never made the connection until years later, even though the onset and vaccination were only days apart (funny how the human mind works sometimes)
I do know exactly what you mean; I called it ‘cleaning out my life’ and I did a thorough job! I expressed it as getting rid of all sorts of physical and emotional toxins, but its the same thing. Its riding oneself of the ‘overload’, which was a term coined by a wonderful early writer on subject called Jackie Steincamp. The reality is however that most people need more support than they actually get to do this because so many of the physical demands of such a process require help. But I do think the it is possible (or perhaps unavoidable) to ‘let go’ of a great deal. Thank you.
Very interesting and I can relate to the longing to escape. I was diagnosed 4 years ago with CFS & Fibromyalgia, but before that I had a complete breakdown which I believe was due to a lifetime of stress. My “breakdown” left me shaking so badly that I could barely get a fork to my mouth to eat or a cup to drink. I have always been very sensitive as a person, but bad relationships and a stressful job over many years totally destroyed me.
When you think back years ago people who were very ill were sent away to a sanatorium to convalesce. I cannot cope with any demands on me at all. I spend most of my time at home alone.
I’m still struggling to cope and had to give up my job.
I also found the comment about exposure to mould interesting as I lived in a house with a leaking rood for 5 Years and the bedroom where I slept was covered in black mould.
I hop you are no longer in that house. If you are you should get out. Cleaning it is not enough for a person that is sensitized. Even just bringing your belongings with you when you move can keep you sick. There are several self help groups you could join for more information.
I’m in the same house Christy but I’ve been trying to sell it for the past 8 months. The rood has been repaired and the mould cleaned away, but as you say the house could still be making me sick.I’m 59 but feel 89 much of the time.
I really love the idea of these convalescence homes for people with ME/CFS/Fibromyalgia, ideally with brain training classes, the right diet and the required physical treatment regiments we know are supportive to help people recover.
PS: glad you cleaned up the mould, hope you mange to move somewhere else soon.
I had no idea so many others experienced this too! I have this deep yearning in my soul for the beach. It’s been 2 years since I have been. My urge to “retreat” was so strong recently, as I was in a difficult flare, I was considering going on a silent retreat at a Monestary…but I am of a different religion. I thought I was starting to lose my mind as that sense of desperation for quiet and calm wouldn’t go away.
Really felt like an obsession for me, used to think about it quite a lot during my later years with ME/CFS/Fibromyalgia, right before I recovered.
I agree with the posters that say look for mold. Mold and related toxins are a common thread between many of these illnesses.
When ever I am in a flare or crash I have the urge to flee, be on my own , in the mountains or at the sea. It is interesting that thisnis a failry universal response.
I am sure that it is definitely a survival reaction. I too have often thought that there needed to be sanitarium like places for people with CFS/ME to go to recover.
Intersesting to read everyone’s stories.
I also thought this was just me, but like I said, I kept hearing it from others who recovered. In fact many of the people who shared their story of recovery on my site mention it in their interview – Tim and Rachel come to mind straight away, but I’m pretty sure there were several others.
Oh yes I can very much relate many many times I would feel the need to “get away”. Even with a loving husband and small child I often saw myself moving into an apartment alone as the demands were just to high for my functional level. Several years prior to becoming really ill and diagnosed with CFS I felt the “urge” to run (out of my workplace, from a social situation for no apparent reason, from my parentsin my young adult years). Interestingly enough I was a competitive long distance runner before ill health stopped me in my tracks so to speak. Maybe I was running away from something for years and just didn’t know it.
Interesting comment Louise – indeed who knows.
But I hope you are now tranforming that urge into a useful strategy for your recovery. 🙂
@Louise ‘from a social situation for no apparent reason’ YES! This has been happening to me for years – it began way before my other symptoms. It would usually happen at a party, or a dinner – almost always when I was with more than one or two people. But even three people could set me off.
I’d suddenly need to get away from them. Even for 5 or 10 minutes. I’ve been caught in bathrooms enough times to make people think I had a drug problem! I’ve also been caught wedged under a table in a loud nightclub covered in coats, asleep, and on the fluffy carpeted floor of somebody’s unused spare room, in child’s pose, having told the group having dinner downstairs that I was going to use the bathroom.
Now we have a rule – we don’t go anywhere in carpools, nor anywhere in our own car that is too far for me to safely and easily grap a cab and get home if I suddenly feel the urge.
Also – having kids! Young kids are an great excuse to leave early from anything. Or not to go at all (babysitter issues, etc) and have saved me many times from having to wander into somebody’s yard and sit on a bench in the dark, for example. But for every positive, there is a negative, right? The brilliant phrase that Jeani mentioned about not wanting anyone ‘to have demands on me’ – well it becomes pretty hard with two toddlers!
But you’d be surprised I’m even working on that one too. I am convinced this is the way to go. Bring everything down until you feel completely safe and cocooned (or as much as you can) and then, when you’re sure that you’re better, start to slowly re-introduce life, one page at a time.
I’ve been talking about what some of us call “The Locations Effect” for quite a few years now, and have a website and a Facebook page under that name.
Until very recently, I felt like the few mold avoiders who were talking about this phenomenon were lone voices in the wilderness.
But recently, even just in the past six months, I have been seeing a whole bunch of media articles on this topic, based on a new line of research studies that have been emerging.
Some media articles are listed here, and there also is a link to some journal articles.
http://paradigmchange.me/locations/
Basically, what these papers are saying is that if you are living in a less toxic part of town, or preferably not in civilization at all, and even better than that close enough to the ocean that you can see it – and that regardless of where you live, if you spend more time outdoors rather than cooped up in the house – you will do better.
Better in terms of mood, better in terms of health, better in terms of longevity.
And all of this is totally consistent with what mold avoiders are reporting.
So this is some progress.
Now, the next step is for people to consider WHY this sort of locations effect exists.
If the reason is that being in nature is less stressful, then perhaps the solution to that would be to try to work on stress issues while in the city, with biohacking technologies or pictures of nature or whatever.
But if the problem is just that cities are toxic and bad for people, and that nature is less toxic and thus healing, that would suggest a different solution.
For what it’s worth, my own feeling is that the thing that is most important is what is discussed in this Science Daily article – that is, that the microbiome is some locations has been totally disrupted and that this dysbiosis (rather than the toxicity itself) is driving the biggest health effects.
https://www.sciencedaily.com/releases/2016/04/160419144724.htm
So hopefully we will be seeing more research on that.
People who are “well” have this longing too. I think it’s a factor of life in the 21st Century. Before I got sick I read a wonderful little book called Slowing Down tot he Speed of Life. Was I drawn to it because my underlying immune condition was revving up and getting ready to take me out of the working world? Perhaps. Yet many friends who were drawn to this concept and have remained healthy have nonetheless spent the thirteen years of my illness continuing to maintain a breakneck pace at work, commuting, exercise, socializing, and travel. From conversations with others–or just scrolling through the feed on Facebook–I think this longing to escape is not endemic to our illness population but part of life in our times.
I fear that many comments here can be used as fodder for the psycho-social camp. While those of us with ME/CFS know that people with all different medical conditions benefit from these healthy practices, it is often used “against us,” partly allowing people like the PACE authors to think that we need this kind of treatment only but not also bio-organic medical advances.
I write all this while I have great sensitivity to mold and chemicals so I practice avoidance of those; I practice mindfulness meditation, yin yoga and deep breathing techniques of various schools of thought, try to sit outside daily, and often drive to the ocean with my husband when I’m quite unwell just to sit and look out, listen, feel the air and smell the brininess. These activities do enhance my quality of life, but they aren’t curing me. Would I be worse without them? Undoubtedly. But I still need bio-organic treatments to be developed.
Dan, I know you are not saying here that bio-organic studies and treatments aren’t needed. I am just adding a voice of concern for this public thread that there are others reading these posts who won’t appreciate the context as you and we do.
Hi Carollynn
Indeed a multi-lateral and tailored approach is key to recovery, but the answers are often more complex than most people anticipate.
My message has always been to create more focus and clarity around the condition, because I feel the lack of it is why the distinctions are missing for people seeking recovery.
Without opening a bag of worms here, regardless of what any of us think about the PACE trials, the fact is that many people greatly benefit from the RIGHT exercise and CBT applied in the RIGHT CONTEXT. In fact, many people actually credit their recoveries to it. (oh boy, I am sailing into controversial territory here – hehe) The real problem with some proponents of exercise and CBT, is when they suggest the illness is all in people’s head, that it is purely psychological, which of course is just plain silly.
So I agree with you, better physical treatments are needed to support our bodies deal with detox problems as well as allergic responses. However, it is my view that MCS is primarily a problem of sensitisation (ie. neurological (not psychological) in nature). That takes us into the territory of conflicting logic, because whilst avoidance makes sense (especially to mold for instance – let’s face it, nobody should be exposed to that, MCS or not!!), this strategy arguably re-inforces sensitisation. Suddenly what helps, hinders – and hence people get stuck.
So mold becomes more complicated, much more than other MCS reactions, because not only is sensitisation involved, but of course also the toxic aspects of it (even in smaller exposures) as well as an allergic response in most cases. And as far as I know, there is no immunotherapy for mold.
Much more to say here, better stop before it turns into another blog – hehe.
We’re more on the same page than my comments might sound. Once more of the bio-organics of what causes our condition and subsets are better delineated, with real treatments, I will jump in with more abandon.
I have often thought about how historically, at least what we read in literature, when people in the last few centuries were sick (and they were wealthy enough) they would be on bed rest for weeks and months, often sent to places dedicated to rejuvenation. With the advent of antibiotics, our culture got this idea that you could just take a pill and get better without giving the body much rest–even for illnesses that aren’t treated by antibiotics. Of course antibiotics have done way more good than not, but this mind shift has had consequences, perhaps perpetuating these “smoldering” conditions.
Yes I figured that much. 🙂
You are right, somewhere along the line we moved away from recongnising that the body does the healing and that we need to create the conditions for it to do so, to thinking that we can ‘fix’ things. I cannot really think of ANY cures for illnesses – outside perhaps bacterial infections.
Perhaps we lost something along the line of all the medical progress we have enjoyed this last century!
Oops–forgot to click “notify” so that I could stay in the conversation.
It would be wonderful if someone could identify the factor which makes one person (and not another) sensitive to mould. Some underlying difference must be present, whether in microbiome or DNA or other! Sadly though, there is so much that doctors do not know. Even more sadly, they like to pretend otherwise…and still take your money!
In the Truckee teachers lounge, “simple proximity”
The people in the worst mold zones got the sickest.
Hi Erik,
But that means that essentially everyone in a house would notionally get sick, but I don’t think it happens that way. I suspect there is an underlying physiological difference which increases susceptibility. Now…there’s a puzzle for the researchers.
There are genetic tests that explain it.
This is exactly how I felt and often still do, but not as often. I used to visualise hourly a bothy in remotest Scotland or a noose hanging from my four poster bed. Either was as much of an option as the other to me. I did go to a hospital in India for 6 weeks which improved my sleep but nothing else. After 12 years of this I know my own body well which is the only way for me to cope. The bothy is still there in my mind’s eye, as is the noose unfortunately. Love to you all X
Hi Caroline,
It sure is rough having this illness, and finding ways to cope is important.
Hope you find ways of letting go of the negative imagery and extend the positive restful ones.
Linda B – hearing how much MOULD is a trigger is fairly new to me. I got ill through regular, sustained, intense psychological stress which is still my trigger today, though it’s coming down.
But as I understand Dan’s explanation, almost anything in the external world could become a trigger because of the association we make emotionally in the brain between feeling ill and getting symptoms and the external trigger.
And the way the brain works with conditioned reflexes and establishing neural pathways is that the trigger (in your case mould) actually DOES become the trigger for making you ill. It’s obviously very complex, and presumably there are chemicals in mould which more readily activate the sympathetic nervous response in the first place, but essentially the power of the trigger lies in the association we create in our brains with it.
I’m venturing this explanation partly to help me understand better, but am open to anyone pointing out where I might have got it wrong!
Anything that helps reduce stress loads is helpful for healing from any illness. But to say that psychological stress is the main factor in creating and maintaining illness is harmful. The propensity to blame the sick for the illnesses–especially in the case of ME/CFS–and for not “doing their illness right” when they don’t get well has fostered disdain for our population. People have blamed cancer patients for the cancers (usually calling it “unresolved anger issues,” ulcer people for their personalities, and int the past both TB and MS for their personalities as well. Until the biorganic mechanisms behind getting sick with ME/CFS and staying sick with it are understood, we do ourselves and our community harm to focus on this is as the cause. We are perpetuating the psycho-social model.
That said, I think that the Oxford Case Denton used in PACE probably did help people who were fatigued because of illnesses other than ME/CFS. I can imagine that a practitioner of CBT and GET who has helped someone would dig in with this approach, not understanding the very disabling symptoms made worse by this approach in people with ME/CFS. That’s why it’s been so important to have better diagnostic criteria–not just a new name–so that we can get people into the treatments appropriate for them.
Auto-correct fixed my typo to “Denton” from “Definition.” That should be “Oxford Case Definition.”
Hi Carollynn,
Thanks for your comment, I totally hear where you are coming from.
One thing is for sure, many of us have very strong opinions about this – and frankly we have earned the right to do so after often many years of suffering with ME/CFS/FMS.
It’s my view that the “mechanisms behind getting sick with ME/CFS and staying sick” are not as much of a mystery as commonly suggested, which is why it has been the thrust of my efforts ever since I recovered to discuss this, however, I totally respect that there is still a lack of concensus on the issue. Having said that, it seems to me that we are moving towards a consensus with it becoming fairly widely agreed now that the illness is neurological in nature.
I too find it offensive when people suggest that ‘some unresolved emotional issues’ are solely to blame for the illness (I don’t think Christine was saying this), it seems a bit of a cop out when peole dont’ have the full answer. (as you so poignantly pointed out about cancer, TB and MS)
However, having said that, if you accept that the root cause of Fibromyalgia and ME/CFS is dysautonomia (and as I suggested, I feel we are seeing more concensus building around this now), then of course such emotional issues are perpetuating and can even be original factors creating the illness. In fact, we see this with a very large amount of people with the illness.
But because this is only part of the problem, we see that even when people resolve such issues (or don’t have any to start with, which is rare, because virtually all of us end up with emotional stress once we have had the illness for a while), some still don’t recover (some do recover like that, which surprised me when I first heard about this, but they usually do other things too).
That’s why we see what works for one person doesn’t work for the next. It’s about resolving our personal triggers and dysfunctions in my view (physiological and psychological as they may be).
The distinction between real psychosomatic factors (like we see in illness such as heart attacks and even cancer) and saying the illness is emotionally based or in our head is often a fine line – I think this really needs clarification in the wider ME/CFS/Fibromyaglia patient and medical communities.
I was fortunate enough to be able to listen to my urge and escape. Talking with my Dr, he supported it. He also described that it’s called the “shut down”, similarly to someone purposely being over medicated in order to allow necessary rest that the body is asking for. (In a controlled environment of course & for a specific amount of time)
I want to share that for me it was a relief and exactly what I needed. However, also for me, when it was time to come back into society, I had to be weaned in, it was all too overwhelming again. I would certainly repeat the retreat and I recommend it as long as a physician agrees to it. But hearing your method of taking time out and meditating to slowly reduce stress is a great idea. I would think that this way would allow for normal societal function when returning to stressors/stimuli instead of being weaned back in.
I’d like to offer too that with my experience I was in escape environment for 3 months, that was more than enough to shutdown and reboot. But note, that it took much longer to cohabitate with society regularly for a good year or so. I still want to runaway though not as urgently. That is when I’ll spend the entire weekend to myself and that’s enough to refresh. I don’t think that it helped that the environment that I returned to after retreat was the same as when I left. Unfortunately there was no escaping my hectic life at that time. A period of 8yrs to be truthful. Perhaps that would have made all the difference. Thanks for the great info!
Hi Amber,
That’s a very interesting way of describing it by your Dr, and I would have to say I agree.
But your comment is perhaps the most pertinent yet in this blog in my view.
Because I imagine I would have had the same experience as you if I had gone through with it. Simply removing ourselves from the stressors sure is helpful, which is arguably what most people with Fibromyalgia and ME/CFS do anyway as they learn ‘management’ strategies over the years (ie. avoiding stressors that trigger the illness, like certain exposures, physical exertion, certain foods, alcohol, stressful situations etc etc.). However, it is really about rehabilitating the body and the nervous system to cope with these normal stressors, rather than only avoiding them.
Hope you find ways of fine-tuning your strategy for even better results going forward! 🙂
I have had this same urge to go into nature! It is overwhelming. My body begs me for a change of energy, to be around things that are alive. I have looked into going the amazon rainforest and staying in a hut. Also looking at retreats in hawaii. For now though I satisfy myself with a walk and sit in the woods everyday. When I was home bound, I decided that if i were to leave the house I would go to meditation group. It associated activity and leaving the house again with relaxation and safety. I am 60% recovered again and working part time. I used to be unable to shower standing up and have extreme exhaustion. I have also had magnet therapy done to alter my energy and it has greatly improved my fatigue. I was highly skeptical but so glad I did it.
Supplements that have also helped are bovine colostrum, LDN (1mg), melatonin (.5mg) and saccromyces bourdii.
Also I fought thyroid cancer a year into getting severe CFS.
I think we need to look at the relationship we have to our environment- physically, emotionally and spiritually. Reading Becoming Animal by David Abram has been illuminating.
I think when you have diseases like this you start to look at everything in your life. I know when I got chemical sensitivities I really started to look at a lot more – that’s for sure. Thanks for the tip.
Hi Kate,
Wise words, I hear this often from people recovering from ME/CFS/Fibromyalgia – thanks for the tip – sounds like an interesting book.
I think everyone with long-standing suffering will feel this need of getting away. I do feel it too, after 16 years. Mindfullness? Ok. Coping? Ok. Doing the right exercice? What? Doing the right CBT? Sure? So, what about the 2/3 who improve on Ritux? What about the people who improve on antivirals? What about the people who die with these conditions? What about the immune research, the microbiome, the genetics, the Ron Davi’s work…and go on… Sorry but I’m tired of this ambiguous language which suggest that we are not doing or coping or understanding our illness well. This has a “guilty component” even if it is no the purpouse of the author. Only my opinion.
Hi – thanks for your comment.
Unfortunately I don’t understand quite what you are saying, but hopefully I got the gist of it!
Yes, so many things can be helpful, because of course we have so many dysfunctions and symptoms that the list of helpful treatments is almost endless (and of course none of these are ‘cures’).
With regards to the ‘guilty component’ – this seems to come up often which is a shame. Whilst certainly some people create an environment that make the onset of the illness no surprise (forget burning the candle at both ends, some people throw the whole candle into the fire), many of us don’t do anything like that. And even for those who perhaps approach life in an irresponsible way not conducive to health, I don’t think feelings of guilt are all that useful and focussing on ways to improve health is probably much more helpful.
I, too, long to escape everything, but the truth is, no matter where you go, there you are. My mind keeps resisting, but I know the healing begins with complete surrender to All That Is. I will have to do it in the middle of the chaos of the insanity around me. I’m looking forward to having time to read the comments and suggestions from all of you.
Well, certainly physical escape alone isn’t that much help – it’s really what happens mentally too. I often see people who are lying in bed, seemingly doing nothing but in truth are a long way from resting as they are feeling completely stressed out. Surrender is powerful, and it doesn’t mean giving up. 🙂
I just turned 60. Have had this disease for 30 years. I have kept my life pretty normal, just tell myself I have to go on and live with all the pain, fatigue, brain fog and depression. When my M.D. First mentioned Fibromyalgia to me, he indicated there was nothing to do about it and that most physicians believe it is not really a disease. He implied that the more attention I gave it the worse it would be, so I did just that. I never told any other doctors and basically felt ashamed of this weakness I had. I have just endured my life. The last year it has become so unbearable I dread getting out of bed. Now I feel that I have had it for so many years, in this manageable state, that it is too late to ever recover. Except now it has become unmanageable and the pain is more than I can endure. This last year I have acquired a new illness, idiopathic neuropathy. Also another disease to just learn to live with. If surrender doesn’t mean giving up, what does it mean? I have for 30 years tried to not surrender to this disease?
Keep digging Sadie! Keep getting the blogs and watching the FM news. (Have you tried medical marijuana or low dose naltrexone by the way? Those are two things most doctors would never recommend but which can be helpful).
Other things coming down the pipe are more effective opioid drugs, vagus nerve stimulation, ketamine derived drugs and ion channel drugs that block pain signals. Plus improved versions of Lyrica and some other drugs are expected in the next year or two.
I just posted the story of a women who had ME/CFS for 25 years and fully recovered. (See the recent Lerner Recovery stories blog.)
I don’t think its ever too late to recover. Some people such as Mike Dessin were in horrible, horrible shape and they recovered. It doesn’t happen often but it can.
Good luck!
oh, what a wonderful story. thank you very much! I have been ill since 3 years and there is a growing deep desire for retreat. It touched me deeply when I read your wish about being away from everyone. I am single so I can live my hermit desires, and it feels totally right for my soul. I sleep a lot, and enjoy the “falling asleep” because these moments between being awake and falling sleep open doors to my connection to the big absolute, to god, to beeing. being in nature, being in silence also opens the door to oneness with everything. there is a big desire to go to a monastery (I am too weak to do so).
For me my illness is a spiritual illness. I`ve lost the connection to BEING itself! Before I fell ill I was too much in my mind, too afraid to make changes in my life and let go job and partner to feel more authentic.
This illness is the expression of my inner rigid and fearful structure. I try to connect deeper and deeper to what I really want, how I really want to live, and I work a lot with the teachings of Osho, Moojii, Tolle, …
Maybe when I will have succeded in being again connected with the “BEING” itself, healing will occur. I hope so! as to the desire of living like a hermit I have no idea how to live that without having any money… at the moment my mind blocks this aim in my life very much – I feel that I have to find some solution for not getting stuck in my inner process, not get stuck again….
It is so hard to trust life, to stay inside the flow of the river of life….. any ideas or suggestions for me?
Good luck with your quest. Even if you don’t become well it is a very worthy one!
This spiritual journey is often a part of many people that recover. But this ‘fearful structure’ you mention of, can also be re=aligned in a more direct way with the help of a skilled therapist, and it doesn’t have to take as long as many of us think.
When we feel so sick and find it hard to engage in life, we can also fall into a bit of a trap of becoming too internalised. Connecting with the external world with even simple activities (like colouring for example) can be helpful, to ensure we don’t get lost in our quest for a deeper spiritual connection. In the end, you will negotiate your own journey, but seeking new experiences is often helpful.
thank you for your story 🙂 I tried to write a comment but it seems that it had vanished 🙁 ? so I try again. I know this desire very well to get away from people. there has come up a big wish to live like a hermit, maybe to join a monastery. I am not sure if this is a symptom of the illness. is it? who knows? to me it seems more that I found out that this is what I really want from life, a more authentic life than before: being alone, being in nature, meditating,no small talks,… there is a big seperation from the river of life where I have been fallen out long before the illness came. this illness seems to me a spiritual illness. healing means to find back to authentic being, following my inner desires and needs, not beeing imprisoned by a rigid mind, unable to let happen changes in life (job, partner, …). It is about learning to develop confidence in life, how can I trust life when changes want to happen and not to block them. to let the river flow and just follow. when I try to imagine my future I can`t see me doing my job any more (too exhausting), I don`t see any occupational perspective, that frightens me a lot. but there is this desire and a very clear idea of how I want to live: in a hermit way, like a monk or a nun, without many people around me, in nature, silence, maybe in a monastery….any ideas how I could transfer this desire in my life?? now I get money from my insurance, but some day I will have to earn money by my own again – and how will that go together? somehow this question blocks a lot of energy, and again it seems to me that I can`t follow the river where life wants me to go…….
Hi Sarah,
Your comment is above this one! 🙂
I agree with you that “It is about learning to develop confidence in life”, but really, this is quite a challenge when you are sick with ME/CFS/Fibromyalgia. In my own personal experience (and experience in seeing others’ recovery), this really comes to fruition as we recover. In fact, sometimes even after we have recovered!
Finding ways of engaging in life without feeling over taxed whilst we are ill is a real challenge, but there are benefits in this that go way beyond just coping – like they say, it’s journey.
I have a very strong urge to get away into nature. Where I live is very urban and industrial. There is relentless traffic and industry noise 24 hrs a day. It’s also very heavily polluted with a lot of anti social behaviour centred around noise. I often get my sleep disturbed by excessive noise. Random fireworks are the worst thing as they can be any time of day or night and also scare our dogs. I don’t enjoy living in a city, never have. Circumstances beyond my control brought us to live here. Now we’re stuck.
I hope you can get out of there. It can only help. I don’t know where you live but I’m travelling the western U.S. in a van. If you can get of there for a week or so at a time that would be a good thing! Good luck.
Sure is frustrating. Sometimes we cannot control these things, which is when it can be helpful to ask “WHAT can I control?”
What things can I do to enjoy a better environment? What can I do inside my home? What can I do to expose myself to better environments some of the time? And what can I do to change how I feel about the negative exposures that can’t be avoided.
Sometimes the answer come easily, sometimes they take a little time. But at least we can ask the questions. 🙂
I already know that the only thing I have control over is my reaction to it. However, it’s very hard to live with the sleep deprivation and disturbed sleep. It’s also hard to relax when you’re holding onto a terrified 30kg dog.I wear headphones all night and play hypnosis, guided meditation or similar.I’m mostly bed bound right now. As far as inside the house goes, I try to do a small amount of decluttering and organising every day. While I’ve been this unwell, at one point I could barely move at all, the family haven’t coped with running the household. My husband eventually had a minor stroke and is dealing with the fatigue and other after effects. So clutter and disorder have built up to the max. Although there’s too much clutter I did acquire a large house plant to help deal with inside air pollution. I’m currently trying to reduce all our outgoings and sort debt. Our income, which was already low, has dropped sharply due to my husband being off sick from work. When we have sorted our finances I intend to buy air purifiers and air conditioning. Nothing can be permanently fixed in though as we don’t own the house.In the mean time I am saving up to buy a salt pipe and a salt lamp which may help a bit. We have moving away as our long term plan. We have no intention of staying here.
So, relying on Calgon to take me away just ins’t going to cut it. The desire to escape is right on the money. Considering all of the stress and energy that has gone into getting my home in a pristine state over the last year – mold removal, installing reverse osmosis water filter, putting screens on the outside of my bedrooms to remove cell phone EMF, grounding my computers and sleep environment, it would be nice to have some place to go for 6 months which was already pristine and one could focus on relaxing and healing. Once I get healthy, its on my bucket list to provide a place like that for others.
Great idea Chris. Good luck with getting better.
In 1986 I bought a camper to serve as my safe refuge to escape mold. Soon I was feeling much better.
I looked over from where I lived, directly across the street from the small town doctor who I have been seeing and wondered why he wouldn’t look into the mold.
The next year, when he asked me to serve as a prototype for a new syndrome, I agreed to help Dr. Paul Cheney,
because as a prototype for this syndrome, “CFS researchers will have to look into the mold.”
They never did.
Such a dream! Thank you for even thinking this way. I will help you❤️
Hi Dan, I like to know if you have any idea what the cause is of the ANS dysfuntion? Or could it be due to compensation? For bloodflowproblems?
Hi Gijs, it’s my view that the cause is excessive pressure that the nervous system can’t deal with, and because its attempts actually make things worse (causing immune suppression and many other symptoms), it then tries to compensate and we end up in a mess. But what ’causes’ this, or what triggers it is very wide and varied (which is why we so people get ME/CFS/Fibromyalgia in so many different ways). Some people get a virus, some have a surgery, some get mold exposure, some have an accident, the list is almost endless and usually is a combination of a number of factors. I explain this all in more detail here: http://cfsunravelled.com/how-recovery-happens/
thought this was an interesting piece on’extreme fatigue’ and the brain
http://www.bbc.com/future/story/20160817-the-daily-struggle-of-living-with-extreme-fatigue
My life (77 yrs.) has been filled with stress & illness. I was pulling my hair out by the roots at age 4. I believe the very serious problems began at about age 14 with multiple deep dental amalgam fillings. That’s when I started to lose my memory. Extraordinarily stressful life situations followed until 1987 when I had a hysterectomy; misdiagnosed because of various hormonal symptoms. When I came out of the hospital I was terribly ill, diagnosed with chronic EBV and other viruses, and so many symptoms I won’t even begin to describe them here. ME/CFS/fibro/ICS/MCS. The constant thread always running through the backroads of my mind has been one of escape. As long as I can remember, I’ve wanted to escape, preferably to a quiet ocean cottage where I can walk on the sand every day and swim and play in warm salt water. Hawaii. It haunts me to this day. It was so interesting and validating to read your story and those of others who have had the same experience. I feel like I’m in prison. Actually, where I live is very much like prison – a retirement community based on vitality and health, where total involvement is encouraged. I’m too sick to participate, and am concentrating on making my environment as peaceful as possible. I have ocean videos on my TV and nature sounds & pictures on my computer. I listen to music so often I wear out Bose noise cancelling headsets! I photograph beautiful things. I think it is a miracle that I am as well as I am, given everything that has happened to me. Thank you for such an informative and, to me, validating article. Bless us all for our commitment to health & happiness. And wishing we could all escape to the places of our dreams.
I just wanted to send you some LOVE!
Does anyone know where to find a succinct summary of EEG changes in MECFS? I know I’ve read about alpha wave intrusions into deep sleep but was there something about increases delta and theta waves during the day too?
Dude!!!! I keep saying “i want to go home” all throughout this illness…and by that i mean home to nature! I want a cozy village in nature, wild animals, garden, trees, sun, water…that’s it. I started to heal really well but had a few bad shocks to my system. I will buy your program – hopefully soon! Never feel bad about charging for it. You worked hard and deserve it after going through this. Thank you for your continued support within the community!!!
Exactly how I feel. Although we live in Cornwall – I just want to escape to somewhere with mountains, streams & just nature. A log cabin with no TV, phones & boilers that all cause strange reactions & bad turns – Hopefully one day
My daughter has had extreme neurological symptoms from ME and has been unwell for 3 years . You name it she has it . She has this overwhelming urge to just be in nature too . This is a theme that reappears constantly. Dan’s ans rewire has been so helpful as she feels it is like a friend coaching her . I pray for the day that she gets better and for everyone else that suffers with this illness. I have no doubt that recovery is and will be possible