“Pain is inevitable, suffering is optional.” Buddhist saying
Something new has become possible with the long-COVID funding. Long sought answers to ME/CFS are not a pipe dream anymore but appear achievable. They will, however, take some time to emerge. Yet many people are suffering now, and some may not make it until those answers emerge. What a tragedy to endure so much and not make until the end. Supporting everyone in “making it” sparked the idea for Health Rising’s “Ending Suffering” project.
Studies indicate that ME/CFS and FM are uncommonly difficult diseases to have.
The Ending Suffering project is dedicated to exploring the rather astounding notion that suffering is optional.
Could it be?
The project will examine ways to reduce suffering and improve the levels of joy, well-being and satisfaction in people with chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) and allied disorders.
The studies suggest that these are good diseases to test this “suffering is optional” notion on. If it works in them, it may work anywhere.
People with ME/CFS have been shown to be more functionally impaired than people with heart disease, heart failure, multiple sclerosis and other diseases. Health related quality of life (HRQOL) scores are similarly low. One study found the quality of life in ME/CFS to be “particularly and uniquely disrupted“.
Most people with FM report experiencing moderate to severe disability due to their illness, and high rates of social security disability are present. Rather remarkably, higher levels of psychological distress were found in fibromyalgia than in the dreaded chronic regional pain syndrome (CRPS).
The project also embraces the idea that the suffering in these diseases is largely brain-based and that much of it arises from issues with the central nervous system – most of which seem, but are perhaps not, out of our control.
The neurological basis of suffering has been known for quite some time, and practices that can reduce it have been validated. Back in 2009, Rick Hanson outlined the neurological basis of suffering in his widely lauded book, “Buddha’s Brain: The Practical Neuroscience of Happiness, Love, and Wisdom“. In the 2013 update of his 1990 book “Full Catastrophe Living” that started it all, Jon Kabat-Zinn reported that 1,500 scientific studies and papers in the medical literature examined ways to reduce suffering without drugs.
Over time, of course, the brain organs and pathways associated with suffering have become better and better elucidated. The question this project concerns itself with is whether it’s possible to impact those brain pathways and reduce suffering.
The Brain
It calls for a little evolutionary history. Our brains did not just burst into the world. They were built, piece by piece, over eons of evolutionary time. First came the so-called reptilian brain (hindbrain) centered at the base of our skull. It’s an ancient, powerful, and rather simple regulator of the basic processes (breathing, blood pressure, swallowing) of the body.
Built on top of the hindbrain is the midbrain which regulates movement, processes sights and sounds and the sleep/wake state.
The topmost and largest part of the brain is the forebrain. Several parts of the forebrain (insula, prefrontal cortex, anterior cingulate cortex (ACC), amygdala, cerebellum, periaqueductal gray (PAG)) produce the emotional and mental aspects of pain.
At the very bottom of the forebrain sits the limbic system which used to be known as the “tween brain”. Made up of the amygdala, hippocampus, hypothalamus, nucleus accumbens, etc., the limbic system sits in the very middle of the brain.
A good deal of our emotional life (fear, reward, motivation) derives from this more primitive part of the forebrain.
Surviving In a Dangerous World
In the dangerous world we evolved in, hypervigilance was key.
The overriding need to survive in a dangerous world is the brain’s master theme. Our brains developed in a world where the smallest misstep – the snap of a twig that we didn’t hear, the slight movement in the shadow in the bush that we missed – could mean death.
We survived by being vigilant, and that required putting a premium on processing negative information very quickly, more quickly than positive information. The danger motive also causes us to hold negative information in our memory banks longer than we do positive information, and it makes it more difficult to remove those memories. The negative memories we have, in other words – just stick. As Hanson stated in “Buddha’s Brain”:
“the brain is like Velcro for negative experiences and Teflon for positive ones”.
The Fear Organ
A chronically activated amygdala has the potential to produce a lot of suffering.
Given the number of negative experiences that people with FM and ME/CFS encounter, it’s no surprise that the amygdala – the primary fear organ in the brain – might be involved. Lying right at the heart of the “suffering response”, the amygdala, a small, almond-shaped organ in the center of the brain, is tasked with adding feelings of fear and unpleasantness to situations.
The amygdala also, interestingly, plays a major role in what we pay attention to, and is a powerful autonomic nervous system regulator.
When activated, the amygdala pings the hypothalamus, which then activates the sympathetic nervous system (SNS) or fight/flight system – a system we know is overly activated in fibromyalgia and chronic fatigue syndrome.
The first sentinel in the danger response, the amygdala has to be lickety-split fast. Once activated, it responds within milliseconds on a pre-conscious level. By the time your conscious registers that a car is coming towards you, your amygdala is already starting to move your body out of the way. The amygdala introduces an important theme that we’ll follow up on in future blogs – that much of what affects us comes from subconscious levels.
A damaged amygdala can be bad news in two ways. First, it can result in a barrage of “excitatory inputs” from the brainstem which send the amygdala into hyperdrive, causing it to slam the great regulator – the prefrontal cortex (PFC) – with danger signals. Too much of that and parts of the prefrontal cortex will fold – giving the limbic system free rein.
The Calming Center – the Prefrontal Cortex
Sitting at another hub of the emotional response to pain, and playing a dominant role in how much suffering we experience, is the medial prefrontal cortex (mPFC) and the anterior cingulate cortex (ACC).
The prefrontal cortex (red) is tasked with calming the limbic system down. Some studies suggest it may not be operating so well in ME/CFS and FM.
The mPFC inhibits both the sensory and emotional signals generated in the limbic system from getting out of control by reining in the fear behaviors and the fight or flight response produced by the oh-so-twitchy amygdala. How much peace, joy and satisfaction we experience is in part determined by how well the mPFC is able to calm down the amygdala and associated organs.
Studies indicate that simply being in chronic pain impairs the mPFC’s ability to do that. In fact, a back pain study indicated that when acute pain transitions to chronic pain, pain signals get transmitted more and more through the emotional circuits of the brain such as the amygdala. The intensity of the pain signals may not change, but they produce more and more suffering.
Interestingly, transition to a more emotional state of chronic pain was predicted, not by a person’s psychology, but by the strength of the connection between a person’s prefrontal cortex and a brain organ – the nucleus accumbens – associated with the limbic system.
The Gist
- The Ending Suffering project is dedicated to the Buddhist notion that pain is inevitable, but suffering is optional.
- It’s dedicated to finding ways to reduce suffering in ME/CFS/FM and provide more opportunities for satisfaction, well-being and joy.
- It arose out of the concern that breakthroughs are on the horizon, but they will take time to get to, and some are suffering too much to make it.
- It proposes that dysregulated central nervous system pathways are a major cause of suffering in these diseases, and that they can be manipulated to reduce suffering.
- It recognizes the fact that the brain is a survival machine which evolved in dangerous times. Its focus on identifying threats and focusing on negative situations simply reflects that fact.
- The limbic system, in particular, the amygdala, is an ultrafast danger response system that runs below the level of consciousness. When activated, it immediately ramps up the sympathetic nervous system or fight/flight system. That system has been shown to be activated in ME/CFS/FM.
- Studies in ME/CFS and FM suggest that the primary regulator of the amygdala – the prefrontal cortex – may have been damaged in ME/CFS/FM – possibly giving the amygdala free rein – resulting in an ongoing fight/flight response.
- Studies also suggest that the more exhausted a person is, the less able their prefrontal cortex is able to rein in the fight/flight response.
- The Ending Suffering project is focused on exploring ways to strengthen the prefrontal cortex and tone down the threat messages emanating from the limbic system.
- If successful, those ways should allow for more peace, satisfaction and joy.
The Exhaustion Factor
Being exhausted doesn’t help. In an attempt to simulate the exhaustion typically found in ME/CFS, a Japanese study had healthy people do cognitive tasks until exhaustion set in. fMRIs indicated that as the participants became more and more tired, their prefrontal and anterior cingulate cortices began to shut down. As that happened, their prefrontal cortex failed to activate their “rest and digest” or parasympathetic nervous system, and the activity of their “fight for flight” or sympathetic nervous system spiked.
The Japanese proposed prefrontal cortex damage is causing something similar to happen in ME/CFS. With the inhibitory brake of the prefrontal cortex gone, the sympathetic nervous systems of people with ME/CFS have become hyperactive producing, among other things, suffering.
Fifteen years ago, this group suggested “the prefrontal cortex might be an important element of the neural system that regulates sensations of fatigue.”
Chronic Fatigue Syndrome (ME/CFS)
Several studies in ME/CFS, and more in fibromyalgia, suggest that the prefrontal cortex is indeed impaired.
A small 2008 study found that exercise reduced oxygen delivery to the prefrontal cortex. Unrefreshing sleep was associated with reduced activation of the prefrontal cortex in 2017. Barnden found increased myelination in the prefrontal cortex which he proposed was linked to impaired conduction from the midbrain.
Lower blood flows have been found in the anterior cingulate cortex – a part of the prefrontal cortex – found twice in ME/CFS.
Reduced acetylcarnitine uptake was found in the prefrontal lobe (and other regions of the brain) in ME/CFS. Reduced grey matter in the prefrontal cortex was highly associated with fatigue in ME/CFS. Elevated lactate levels in the prefrontal cortex were associated with impaired cognition in one set of Gulf War Illness (GWI) patients.
Fibromyalgia (FM)
Pain scores were correlated with grey matter issues in the anterior cingulate in FM. Decreased blood oxygen levels in the ACC were associated with pain. A hyperintense connection between the anterior cingulate cortex and insular cortex (another major player in pain) suggested the presence of overactive pain pathways.
The Way Out of Suffering?
There is potentially a way out of the suffering imposed by these dysregulated networks, and it involves using the highest and most recently evolved area of the brain – the prefrontal cortex – to tamp down the activity of the more primitive parts of the brain.
Studies indicate that it is possible to significantly reduce suffering – even in people with chronic illnesses.
The project’s goal is to reduce suffering of any kind – physical, emotional, mental – and find ways to introduce more joy, peace of mind and satisfaction back into our lives.
Exploring the many different techniques that have been used to do that is what the Ending Suffering project is all about. It will consist of Zoom interviews with patients and experts who’ve found ways to find peace and joy even in the midst of a chronic illness as well as book, research and treatment reviews.
Suggestions – something to read, someone to interview, subjects to address – as well as blog contributions (we already have our first :)) are welcome. Please let us know via Health Rising’s Contact page.
We’re also looking for short videos from people who’ve found ways to improve their quality of life and experience of joy and satisfaction.
The project’s genesis came from the idea that some people who could benefit from future findings aren’t going to make it, but it’s also a personal exploration for me. As the project proceeds, I hope to learn ways to turn down the suffering and open up new possibilities of joy and satisfaction in my life as well.
I don’t know if I will succeed. I do know that it’s worth a try.
I would like to contribute, I love this idea of sharing with others to all help each other!!!
Looking forward to it Lee 🙂
I got alot of benefit from Toni Bernhard’s books, “How To Be Sick” and “How to Wake Up”. Excellent books applying Buddhist approaches, written in easy to follow layman’s terms by a contemporary Buddhist living with chronic illnesses.
I only wish I had found Toni Bernhard sooner. Not only is she validating because she has ME/cfs herself but also the practices she teaches helps me be more accepting when I use them.
She will, not surprisingly, be a featured source on this project 🙂
I absolutely love the idea of this project!
I think this is how I approach coping with ME/CFS … finding even the smallest pieces of joy to help lift me from the dark path this illness can take you.
I am interested in participating
CFS/FIBROMYALGIA since mid 1990’s
Now have a primary immunodeficiency and have a real challenge with IVIG transfusion side effects.
Buteyko, practiced over seven years, the classical version, has led me to be able to react much less to stimuli. It has also helped me become much more aware of myself emotionally and incorporate my Jungian idea of shadow( a work in progress obviously)
From this practice ive become aware of once unconscious body ques, telling me i shouldnt be behaving in certain ways physichally and emotionally. It has also helped strengthen my intetpersonal boundaries.
That’s all mostly stemmed from being more in tune with my breathing
Yes her books are dynamic I feel. I also red the two books by Buddhist Boot Camp. In one of the first meditation exercises I did with Toni’s book was profound. I focused on every step and as I did I actually released such intense emotion I was taken aback. She uses smart discipline to pace herself daily and has educated her family so they support her having to rest to regulate over exertion via physical and mental stressers. I’m glad to hear she’ll be sourced and part of your project. I’d definitely like to get my pain messages coming in semi regulated by the positive thoughts I can circulate around them. Very interested.
When the realization set in that my life was altered with illness and pain that was likely permanent, I was desperate to find a way to live without falling into a constant state of suffering and despair. I googled “how to be sick with grace,” and up popped Toni Bernhard’s book, “How to Be Sick.” Who would write a book with that title? And why would I want to read it–yuck.
I read it. The book changed my life (quite possibly saved it). I have to continually work to find joy. It’s not always immediately available to me, but challenging myself to never stop seeking it gives me purpose. I love the idea of this project and would love to help any way I can. Just the idea of it gives me hope…
Likewise, Andrea! I also get a lot of benefits from listening to Tara Brach’s talks.
Tara Beach is great! She just keeps bringing it and bringing it.
Thank you Christian for your comments which I can relate to with all my heart. It’s the first time I’ve heard someone describe it so aptly. I always referred to it like living in a half life, a grey world alongside the one in colour, that I just couldn’t find a way into. I never contemplated suicide, but I felt that I was moving further and further away from the world of vibrancy and colour that I might just disappear altogether. I’m from the UK, got ill in 1983 whilst working in Guatemala. Finally found myself led to Dr Fuller Royal in Nevada who shone the light on a cocktail of EBV, amoebic infection, multiple vaccines to work in Central America and some amalgam fillings. I was very ill for a number of years but now although I’m disabled I feel I’ve had and have a fulfilling life. It’s just not the same as the one I set out on, is it ever? A turning point for me was stopping trying to find a cure, and accepting, to a degree, the life I had been dealt. It’s such a fine line between acceptance and complacency, but I was so focused on myself, on my illness, on trying different remedies and foods, treatments that I wasn’t living at all. I was always looking inward and then I just couldn’t see. I was also living the continual guilt of not getting better and beginning to think that maybe it was just all my fault. A yoga teacher has suggested that maybe subconsciously I wanted to be ill. I probably harmed myself in subsequent years trying to push through the fatigue, malaise and pain in an attempt to work that theory through. The doctors I did go to see in the eighties suggested I was depressed, (I had very dark moments because of my situation but would not describe myself as clinically depressed) one doctor suggested that I wasn’t married and probably wanted to be, then I was married and had a miscarriage and that was probably the cause of these bizarre symptoms etc etc. And I’m a nurse, I had no validation from the profession I worked in. That was one of the hardest things on top of trying to deal with an illness that changed my life from someone with vitality, who played university hockey and swam, to someone who couldn’t brush her own hair. I started seeing life only through that window Christian.
The other thing that has really helped me, especially in later years, has been giving thanks. I began to find joy in the smallest thing, the expanded moment that you live fully because you can’t rush through, experiencing the world on a different plane almost. Please forgive me if I’m not wording this as I should. I know some of the struggles in the darkest moments, but understand mine may be different. I don’t want to diminish anyone’s pain or struggle, and can only talk about my own experience. But living with gratitude has been very powerful for me.
I now live in València, Spain. I generally don’t go to the doctor, but I do touch base sporadically with a CFS/FM specialist in Barcelona Dr Joachim Fernandez Sola, to keep up with latest research and find that validation that was missing for so long. I also see a wonderful homeopath and equally wonderful osteopath who have brought me a great deal of relief. Thank you Cort for an exceptional blog and such a fine initiative.
Andrea Frankel, thanks so much for mentioning How to be Sick. I just ordered it.
I have IC/BPS and CFS, complicated by MCAS and histamine intolerance. I developed CFS after contracting the Hep C virus about 7 years ago, from a doctor who used dirty syringes. He infected 5 patients subsequent to treating his first patient of the day who had Hep C. (Obviously, this doctor lost his license.) It took me 7 months to find out that I had Hep C, and the determination was unambiguous when the CDC did a DNA analysis of all 6 people, finding a perfect DNA match. I took Rx to rid myself of Hep C, but never recovered my energy and stamina. have been doing much research, and found a researcher at Tufts who developed a product called NeuroProtek, which I took for many months. But I did not feel that it helped me. I am likely to return to it. In the meantime, further research led me to a product called NT Factor – a lipid replacement supplement that heals the damaged DNA of the mitochondria membranes. I have been taking this for about 4 months, and I have felt a bump in my energy level. It does take a long time to replace trillions of damaged mitochondria. PubMed has research on this supplement, corroborating its efficacy. And recently I read about a doctor who is prescribing the same supplement for his Long-Covid patients.
HI pamela, i searched NT factor on pubmed but could not find anything. could you please give some links? thanks!!!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4566449/
This is the link for the research regarding NT factor. He actually goes a little further by adding CoQ-10 and NADH to the NT factor in a product called ATP fuel. This is the product that was researched in the article. Many physicians are using this to treat CFS and other mitochondrial disorders.
I’d be interested in participating! I love the fact research like this is happening!
I have slowly been recovering from ME/CFS over the past four years. Trying to find help in mainstream medicine was humbling and frustrating. One NP told me that all my troubles stemmed from being LGBTQ. (I stopped seeing her.) I feel grateful that I have started to feel better, and I support the project outlined here. Best wishes to all for moments of grace and relief, and for glimpses of joy.
Even the FDA admitted that Xyrem works for fibromyalgia. They just didn’t consider us worthy enough for the risk a few people might abuse Xyrem. Meanwhile hundreds of thousands were dying from opiod use. The FDA also colluded with Jazz Pharmaceuticals to take a cheap natural substance and turn it into a mega-pricey drug for narcolepsy. People with narcolepsy matter, but only if they have insurance.
Yes! I was in desperate pain for 23 years (12 years on opiates) and I found a sleep doctor in St Petersburg FL who was studying The connection between non restorative sleep and fibro pain using Xyrem. Within several weeks of starting the Xyrem the pain completely went away and I was able to ride a bicycle! This is after being bedridden for 23 years!! Unfortunately I have since crashed due to Post Exertional Malaise and am back in bed mostly however I remain pain free! I’m so much more comfortable that it’s a miracle! I try to explain this experience to doctors and others but no one seems to really appreciate what I’m trying to express. Also, it’s criminal that this medication isn’t available to others due to the fact that it’s unnecessarily priced to be completely unaffordable ( right now my 30 day supply costs more than $17,000!!!)
I would love to participate too!
This is a wonderful idea! It gives me hope, at a time when I really need it. I’ll be sure to follow this project, and would love to participate if possible.
Excellent. I would definitely participate. We suffer but we survive somehow. Everyone has a different journey. We’ve found ways to get through the incredible pain and deep body exhaustion. What is it about us that drives us forward through incredible suffering. Interesting topics
How synchronistic! Today I have just returned from a sleep study at Stanford. Those who recognize me know I am ever seeking some sort of explanation or relief. Of course it will be several weeks before I find out what my doctor has learned and what they may suggest–but I did have terrible sleep, as I often do. I think I know the contributors; achalasia choking, menopausal hot flashes and pain.
Anyway, as a contribution for this article, for myself a sure fire way to get a bit of inspiration and damp down pain is with music–music that I love.
Another way to calm the brain and reduce suffering is to dissect my belief systems. With pencil and paper, I can go from strong emotions backwards to listing my underlying beliefs or from ideas about ‘what I believe to be true” forwards. Not enough space to really describe this process here, but it can give a very instructive framework for the ideological template any person puts over free form ‘reality’ to interpret it. It is possible to change your reality by how you interpret it! This can definitely apply to pain and suffering and may be in the realm of what this blog is discussing. It is similar to CBT but NOT CBT. It’s much more nuanced and broad.
Once you figure out some of your foundational belief structures, then you can ‘watch’ how they play out in your life. If you can observe them, then you may find freedom to choose rather than simply reacting to them. You will find that they stretch out like webs of influence and by plucking one string, others may move. And the web is not static either…
Anyway, sorry for the digression… Thanks for this great idea Cort!
Not a digression at all. Being able to observe what’s going on is important. Thanks for the ideas and good luck.
This is a fantastic idea and there is much I can contribute. For now, I’ve had great success with Internal Family Systems work. It is a tool you can learn and practice on your own or use a therapist if you choose. It gives me a way to connect with myself in supportive ways and has changed so much for me. The other resource I particularly like is Self Compassion. The Mindful Self Compassion Workbook (Neff and Garmer) has lots of suggestions and exercises. I just learned compassion releases hormones that calm the brain. That explains why it works so well for my upregulated system. I experienced significant illness trauma with my ME and it’s been my focus over the last 7 years to bring a felt sense of safety into my system. Working through the trauma was very difficult and has indeed been a release of great suffering.
I have “Self Compassion. The Mindful Self Compassion Workbook (Neff and Garmer) ” on my bookshelf for this project:). It came highly recommended. Looking forward to cracking it. 🙂
It’s active viruses causing ME/CFS that are not detected by normal serology screening, the tests are not sensitive enough. PCR tests can detect some Human Herpes viruses but not all can be detected by serology. With active viruses the immune response causes inflammation in numerous areas of the body damaging the mitochondria of the cells and thus causing a multitude of symptoms throughout the body. You can go over and over the symptoms and different effects on the body and totally confuse yourself and others. Most of the top researchers believe ME/CFS to be active viruses or immune not switching off after infection. I think the former is correct. Research needs to be directed to antiviral treatment, or treatment for the immune response inflammation which damages the mitochondria and weakens all organs and other parts of the body. We need if there is no treatment for the virus a way to quell the inflammation other than corticosteroids which interferes with the immune system and makes the viral load greater.
I find this distinction between pain and suffering especially apt with this illness. Sure it will put you through pain or malaise especially when in crash but to me what’s way harder to endure is indeed the suffering, the suffering of existing in the margins of life, of having lost your active life, of seeing life only through a window (quite literally). It’s an existential suffering I can’t get used to. Very hard to cultivate a “joie de vivre” when the “vivre ” part is lacking… So, I’m looking forward to all forms of wisdom in these coming blogs, thank you Cort for this initiative. If all an ME sufferer does is follow research and hope for breakthroughs, every now and then despair hits and when that happens, you need an immediate plan B in the form of some philosophy or attitude or inner stance to hang in there.
“to me what’s way harder to endure is indeed the suffering, the suffering of existing in the margins of life, of having lost your active life, of seeing life only through a window (quite literally). It’s an existential suffering I can’t get used to.”
This is perhaps the central question and I would bet an immense source of suffering in our community. I don’t imagine there are any easy answers but this is the kind of issue that we will attempt to tackle.
Buddha also says: ‘life is suffering’. According to buddha you have to free yourself from the eternal circle of life, death and rebirth.Our CFS / ME / POTS / FM disease is hard to bear. The way you deal with this burden ultimately determines your spiritual growth. This allows you to become enlightened and you never have to be born again. Then you are released from suffering. I think everything is consciousness. Life is a stage play and sick people have a bad part.
Wow thank you so much for starting this project, it’s really like a gift for me how it sounds!!
I don’t know. I have very severe ME/CFS and I still wish they put that money towards researching how to actually prevent me from suffering rather than how to trick me into thinking I’m not suffering.
🙂
Of course! The goal of this project is to find ways to reduce suffering as much as possible until ME/CFS/FM, long COVID, etc. are resolved. If its possible to suffer less while we’re on the road to that why wait?
With regards to tricking you into thinking that you are not suffering. I don’t know if it’s possible to do that. Suffering is suffering, it’s big, it’s nasty – it’s a real load. I think it’s probably too much for anyone to be able “trick you” into not suffering anymore. (If only it were so…) People who have achieved the ability to suffer less will probably tell you that it takes real work.
If money, work, and energy poured into this project was used instead on finding treatments then we would more quickly end suffering for real.
And “it takes real work” sounds awful lot like victim blaming people who suffer the most. As if the reason they’re not suffering less is because they didn’t work hard enough. I don’t like the implications nor do I think that’s true.
This is a Health Rising project – not a research study. The only money involved is my time. I assure you that if Health Rising had the money to fund research – and it doesn’t have nearly the funds to fund even the smallest research study – it would be funding the kind of research you’re interested in.
If you can find a way to trick yourself out of suffering – go for it!
TallyG,
You might appreciate James Coyne’s take on this, which accords with yours (in this case he’s speaking about the use of mindfulness in schools, but the concepts are the same):
“•Investment in universal mindfulness training in the schools is unlikely to yield measurable, socially significant results, but will serve to divert resources from schoolchildren more urgently in need of effective intervention and support.
•Mindfulness Nation is another example of delivery of low intensity services to mostly low risk persons to the detriment of those in greatest and most urgent need.” https://www.coyneoftherealm.com/2016/11/16/unintended-consequences-of-universal-mindfulness-training-for-schoolchildren/
Coyne is one of the people most responsible for highlighting the bad science behind the PACE trial (his speciality is debunking bad research) and became an unlikely advocate for the ME community (and has continued to speak on our behalf since then).
I agree. I think that cort Should at least put some disclaimer that this might not alleviate the severely affected much, ironically the ones suffering the most.
When I was mild to moderate I would not have described by self as suffering unless I was in PEM, I could Often avoid because it’s quite easy to avoid at that level. Now severe I’m in PEM regularly, and suffering most of the time yet if I try to relax I stop breathing and it’s just impossible etc. I don’t have the cognitive ability to meditate and most of what will be discussed here will be unachievable. I think that severity impact should at least be acknowledged.
It sounds like Gupta program in the UK where they love ideas about reprogramming they CNS instead of actually Doing biomedical research. I’ve no problem less Ill people doing what they can to enhance their Qolife as long as it’s acknowledged that the severely affected are In dire need of real help.
“Now severe I’m in PEM regularly, and suffering most of the time yet if I try to relax I stop breathing and it’s just impossible etc.”
One of the functions of stress hormones like nor-adrenaline is *exactly this*: help and improve breathing when in dire need to breathe more. We ME patients often have weakened muscles (needed for breathing) and a very high need to breathe. Both tend to get worse during PEM.
When doing things aimed at reducing stress hormones like nor-adrenaline, we then risk to get our ability to breathe below a remotely safe treshold and our body has to revolt against that hands over fist.
“I don’t have the cognitive ability to meditate”
For years every attempt to meditate or calm my brain got me stressed out and worse. It seems I was trying to calm down the production of stress hormones that I badly needed to keep my metabolism at the bare minimum level to not crumble apart. It took me years of slow gradual improvements before relaxation techniques could support my health, and only still at times.
Kath, I found Buteko breathing training invaluable in dealing with the ‘air hunger’. Learned that very gentle, low energy breathing is all we need. I did an inexpensive workshop with Robert Litman and a private course. Take care
The article summarising the positive effects of mindfulness on CFS could be completed by hinting at the successful use of meditation, self-hypnosis and other mind body techniques by a number of cfs recoverees who have integrated these techniques in wholistic ME/CFS therapy programs: Alex Howard and Ashok Gupta, UK, Dan Neuffer, Australia. Many integrative practionioners recommend such techniques as a part of their CFS treatment concepts. It is high time that these techniques be integrated also in main stream cfs treatment therapies and trials.
This project isn’t about recovery but some doctors are integrating these practices into their treatment protocols. They must be finding them good adjuncts.
The people you mentioned as well as many others outside the ME/CFS field are all logical candidates for this project.
I rely heavily on meditations and talks from Jon Kabat Zimm and Tara Brach. Thanks
I have a alternative suggestion. A famous book on psychiatry said that depression is anger turned inward. The treatment….get angry and get busy. It is hard for patients who have ME/CFS and are rightfully discouraged to get busy, but not impossible. But, it is entirely possible to get angry…angry about the years lost; angry about people and doctors who don’t understand; angry about the things you can’t do any more; angry about the lack of research to figure out this puzzle; angry about the lack of effective treatments.
A well-known book on creativity recommends writing (not typing) three legal pad pages full of your feelings every day. This can be the “get busy” component.
Norman Cousins recommended laughter in his book, “Anatomy of an Illness”. I recommend anger, maybe break a few plates then follow up with laughter. Strong emotions are underrated as treatments.
Anger may not be the highest emotional state but it’s a big step up from resignation and despair. It does move people to get things done – maybe not very efficiently – but they are in action.
Cousins also healed with ascorbic acid – this bit tends to be downplayed in relation to the laughter part, yet it was the key to giving him life back. Reading through his memoir, I recognize traits of ME/CFS – onset of symptoms, wonky collagen, not being able to handle medicines well, etc.
https://www.goodreads.com/book/show/185256.Anatomy_of_an_Illness
There is also Madora – she credits C with giving her the ability to sleep and heal…
https://lessflexible.com/treatment-that-works
*my own experiences with C point that the mode of administration makes the difference. Powder, pills, capsules – zilch of an effect,
{ sorry for hijacking this Cort to talk about C!
Thank you for all your work and efforts and creating community and hope! }
I just had a ‘chat’ with Canadian Blood services. Canadians with ME are NOT allowed to donate blood, which is an odd thing for a disease so inconsequential it gets almost no funding…, but they couldn’t explain why other than ‘risk’. I may paste the transcript below.
I didn’t see anything on the US Red Cross site that indicated this for Americans, and had heard that you don’t have that restriction in the U.S. I don’t know what the status is in the UK, or other countries, but would be interested.
As for using anger – with that combined with Cort’s recent post re: the Cabal blocking funding for ME research – I’m seriously tempted to go to my local blood donation clinic in May (downtown in an area with high traffic – so excellent visibility) and parade up and down with a sign saying “Why are there no treatment centres or research funding for MECFS if we’re not allowed to donate blood?”
If I’m really ambitious, I’ll try to rig up a fake IV/blood bag with poison symbols on it. I’m a universal plasma donor, so perhaps I might hand out the research showing healthy red blood cells get damaged when exposed to our plasma.
I’m AB-, so a universal plasma donor, plus I’ve likely had Covid, and they’re asking for plasma donations from patients who’ve recovered from Covid. But – the risk of ‘catching’ ME trumps all it seems (so, are we contagious or not? Is this a ‘real’ disease or not???)
Makes me so angry.
Cort – if you’re reading this (since I still seem to be on moderation I trust you are) I would really appreciate if you could look into this, and perhaps do a blog post (on blood donations and ME).
Also, is there anyone you know of we could go to for Canadian stats? Thank you.
In the UK, people with M.E can’t be blood donors.
It would be really interesting to hear from a Jewish or Christian theologian talk about the Old Testament book or Job and/or the biblical concept and practice of “lament.” As a Christian with ME/CFS, I’ve found that reading and praying along with biblical authors and characters as they cry out to God, protesting against the injustice of their circumstances, to be very cathartic, even (and perhaps especially) when there’s no immediate happy ending.
I would LOVE to get in touch with people who use their Christianity to find relief.
I would be very interested in that too.
One suggestion could be to get in touch with the author, Liuan Huska who wrote the book
“Hurting Yet Whole: Reconciling Body and Spirit in Chronic Pain and Illness”
It’s written with a so-called Christian perspective and with (in my opinion) so much humbleness towards people who suffer due to sickness or other things in life.
Thanks Rakel. I love that title “Hurting Yet Whole” – that’s really what it’s all about. I look forward to checking it out.
For those who do, the book “The Power of Positive Thinking” by Norman Vincent Peale is fairly good.
He was a pastor, so expect plenty of references to the Bible. He isn’t dedicating his work towards dealing with illness, but talks about it too.
When reading it as an ME patient, it is easy to take insult to the frequent “if you make yourself believe enough it is possible (and pray for it), big forces will drive towards it becomming possible” notions. But one thing I learned from him and his book:
Challenges and suffering also very frequently hold big opportunities for turning things for the better, for either accomplishing goals or when that is not possible to learn and see things in valuable lights you wouldn’t have learned without that big obstacle on your road.
David Graham, thanks for writing this. I have the same (or you know, similar) experience; That to cry out in prayers with some of the biblical characters can be helpful. I love that you are “allowed” in the Bible, to cry out in anger and despair about injustice and sickness.
For me it somehow put the burden of all the suffering in its right place, when I do that. To put the responsibility where I believe it belongs. Hey God! You need to deal with this s***.
I once read a quote from a German Jewish philosopher named Theordor Adorno: “To let suffering speak is the condition of all truth”.
I also get comforted when I think about the Christian God, who is a God who chose suffering for himself.
It’s something I often ponder about and I feel there’s still a lot of teachings there I haven’t fully grasped yet..(I doubt I ever will).
I believe there is wisdom to be found in and through suffering that can’t be found elsewhere in life. Personally, I would rather get my old active (and in many ways) carefree life back and miss out on the wisdom of suffering though. But I can’t. Sigh! However, to know there’s some wisdom to be found makes it for me more bearable (not always though..).
I just wish the church was better in dealing with suffering, sickness, injustice etc. My experience is they often lack in wisdom there. Strangely so. But that’s a talk for another place.
I hope I somehow make sense.. English is not my first language.
All the best here from a sickbed in Denmark
“I once read a quote from a German Jewish philosopher named Theodore Adorno: “To let suffering speak is the condition of all truth”.”
To my ears the Buddhists believe similarly. If suffering is present the first thing is to acknowledge it. That doesn’t mean dramatize it or immerse oneself in it. I think it means to let it up and let it be – perhaps very slowly. Over time it releases..
One of the first books I read when diagnosed with fibromyalgia (1996) opened with a Job quote and said its thought he is the first documented fibromyalgia patient.
This is a wonderful idea! I discovered Buddhism and started meditating about 10 years before I got sick. I’ve focused on stress reduction in all areas of my life. When I could still travel, I went through Donna Eden’s training program and learned a few ways of placing my hands on my head that seem to re-set my brain when it feels scrambled or is mis-firing. If you google ‘neurovascular points’ you’ll find charts, and the 2 points on the forehead are called ‘main stress points.’
I see some discussion above about training our thoughts/belief patterns; this helps me a lot. I’m currently foraging for happy memories, which I invoke every time one of those old tapes starts playing.
Overall, I don’t fall into those holes any more, where difficult emotions trigger cascades of physiological reactions.
“Foraging for happy memories” Nicely said!
I decided to add a tidbit about using the mind to alter beliefs and perceptions about pain (and more).
This is similar to mindfulness, but not it exactly. If I’m having a bad day, or even a usual day, I sometimes go to my ‘Watcher.’ A Watcher is a self aware part of me I have created which ‘sits’ above and behind my head–like a separate entity. It simply watches the ‘me’ as I feel emotions and think ‘thoughts’–no judgement.
It is different from mindfulness as it creates a second level observer apart from oneself who observes the first level observer–which for most people, is the self that ‘directly’ experiences–including ‘self talk’. This helps to sharpen the focus between ‘being (lost) in your head’ vs. noticing, as a ‘separate’ independent observer, what exactly is happening in your head.
It’s a subtle difference, but can be very useful in understanding how beliefs and your mind work together to create your experience.
Hope this helps somebody and was understandable…
Nice…
My goal is to find an hour of joy a day. Be it watching a butterfly, watching a flower sway in the wind. Trying to capture a small piece of beauty by a photo with my camera. Something no one else would even notice and may walk past. Noticing the little thing that can bring us awe and joy.
I also try to be aware and mindful that today could be the last day for either me or my friends or family. I try to live life as if that is true and try to have no regrets for something I didn’t say or do. If its LOVE in my heart, I say it. If its not so nice, but needs addressing, I try to do it with LOVE and have no regrets. We may not have another minute and we can’t regain the ones we lost or change them……we need to make them count in a positive direction.
Today will be past and we can start tomorrow with a new journey with one step going forward……..no regrets.
That helps to keep focus more positive.
I also like a saying by Anais Nin:
We don’t see things as THEY are
We see things as WE are.
That helps me realize something I may take a bit off kilter, may be because that is my perception of its intent. Not really what was intended. That sure allows for a lot of forgiveness and avoiding argument…..until you are sure of How Things truly ARE. If they are how you perceived them to be, your response should cause no regrets. That keeps LOVE and kindness at the forefront. My motto is “Just DO the Right Thing”! That helps keep the heart calm and, in the long run, improves health.
I forgot to add:
If we see things as WE are and not as THEY truly are…..we have to check our perception of things. If we are the ones who decide on GOOD or BAD and that is a perception held by us alone……then only we can change how we perceive.
I have learned a whole lot from my health issues. I have learned about the human body and how it works. A lot of what I’ve learned, I would have never looked into if there had not been a need. The human body and how it is Created and designed is another thing that awes me. How so many pieces are needed to make a big puzzle and forms the blueprint of who we are. So in a way, my dysfunctions have brought me much knowledge about my wonderfully created body. I would had rather had a better working one. But, since I don’t, I can embrace what I do have and work with what I got handed. I can look at the negative and cry…..or I can look at the negative and try to figure out a tweak that might make it a bit better for not only myself……but a whole lot of others. Looking for ? bandaids!
Cory, you are so often so timely in what you write about——and how helpful those commenting are as well.
(Made Herculean effort today, and got the….gee you did so well today……how are you possibly going to be able to do ( x) tomorrow if you say you will be crashing…..)
I don’t know if reading here increases dopamine, but thank you all for ‘being here’
for me (and others).
sunie
Sorry! Not Cory!
Cort. Will try to turn off auto correct, I miss too much
It is damp down not tamp down. Tamp down is for physically compressing something. Damp down is for lessening something as in sound dampening.
https://www.merriam-webster.com/words-at-play/damp-down-tamp-down-usage
Cool! I have made that mistake many times. No longer – thanks 🙂
This sounds like lightning therapy to me.
It also sounds like more psychological experimentation on people with ME because we are an easy target…
“Who are we going to find to try out our treatment ideas based on our unprovable mechanism Michael?”
“Hmmmm, I don’t know Simon. ..”
“I’ve got it Michael! You can use people who have Chronic Fatigue! There aren’t any other treatments for them so a bit of gaslighting and you’ll be set for life!”
“Don’t you want to take part too Simon?”
“Don’t worry Michael, I’ll have your back. ;-)”
I love the comments about finding your joy!
Had a thought about Issie’s times in Nature. One of my favorites is to go sit outside with a magnifying glass. (NO! Not to burn things up!!!) Looking at stuff in a new way can be very relaxing and enlightening–as well as extraordinarily beautiful.
Counting blessings everyday is another way. When it becomes habitual, it can color ones entire outlook…
And forgiveness. There are reasons that we will likely never fully appreciate, for all the ‘bad behavior’ in the world. And we all do at least some ‘bad behavior’ ourselves, so feelings of anger and revenge and disappointment towards others are energy vampires–and wastes of time.
And lastly, the ‘Why me?’ Why am I the one to have these afflictions?’ I say to myself, ‘Why not me? Somebody has to have them…’ And then I apply my inner strength and get on with it–or curl up under a blanket on the couch.
Nancy B, Lovely thoughts from all here, I am especially keep re-reading yours and Issie’s. thank you for boost and much needed ‘reframe’
@Sunie, thank you for the compliment! Back at you!
Now, thought I’d post an article about Fauci and Francis Collins and others discussing long Covid. It’s not the most enlightening article but at the bottom they reference ME/CFS and all the similarities. I’m posting it to show that our problem is really on their radar, despite dismal funding and poor study acceptance.
https://www.medpagetoday.com/meetingcoverage/aan/92209?xid=nl_covidupdate_2021-04-22&eun=g1240599d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=DailyUpdate_042221&utm_term=NL_Gen_Int_Daily_News_Update_active
@sunie & @Nancy, glad you liked what I wrote. We all need encouragement to keep going. None of us are immune to falling into despair and finding ourselves tired of the fight.
I’ve had CFS since 1984 and have (and do) struggle with a few co-conditions like many of you. And I’ve been practicing contemplative wisdom meditations, including Buddhism, for forty years. Ending unnecessary suffering is what my life’s all about. In fact, Cort your opening quote – “Pain is inevitable, suffering is optional”, is in my first book ‘Facing Death and Finding Hope’ – how to give effective support to people facing illness, dying, grief and caregiving.
For the past 8 years, I’ve been teaching seminars and leading guided meditations on self-compassion, burnout, self-forgiveness, gratitude and joy, grief, anxiety and more. It’s all going to be published in a book one day – if I ever get the proposal done – but in the past year, I have found ways, especially due to the pandemic, to share with everyone what I have to offer. And I’ve been sooo wanting to share with folks who are ill or grieving, so I’m grateful Cort you’re making this project possible.
Here’s a free meditation – one of my favorites – called “Feeling Worthy of Love” (also in Spanish and German): https://wp.me/P9fIEi-Gu.
Every Sunday I lead an open guided meditation related to self-compassion, and folks who subscribe to my newsletter get the zoom link for it, plus a recording of the session later in the week if they missed it, as well as other free guided meditations. Here’s the link: https://www.christinelongaker.com/contact/.
There are resources in Spanish, French, Italian, Chinese, and German on my webpage: Covid-19 Spiritual Care Resources.
Finally, a quote I end all my seminars with, a guiding principle for my life, from Saint John of the Cross:
“And I saw the river
Over which every soul must pass to reach the kingdom of heaven
And the name of that river was suffering—
And I saw the boat
Which carries souls across the river
And the name of that boat
Was love.”
I think this project’s focus is a really worthwhile idea. Sharing strategies for hopefully experiencing some relief from suffering and maybe some pleasure and enjoyment in the moment, when we can.
I’ve come across Rick Hanson, Kristen Neff, Tara Brach and Jon Kabat-Zinn over the years. I also think Daniel Siegel is funny and explains the whole sympathetic nervous system set up really well in nice short videos on You Tube.
I actually typed out the Anais Nin phrase, Issie mentioned above, years ago and have it on one of my kitchen cupboards.
I’ve had to figure out a way of dealing with the endless assault on my health, wellbeing, character, finances, self esteem etc., etc. Some people have been so nasty, it’s almost (but not quite) laughable.
I live a fairly small, little life. I do my best to look after my 17 year olds – one teenager and one ancient dog. I live to feed the birds. I’m also lucky that I’m able to work part time as a homecare worker. So I spent time with other people, away from home and we chat about this and that. I do the same things repeatedly, which I find reassuring. I spend time in their life for a while.
I know that some people see me as a failure and in terms of social status, wealth etc., they’d be right. But, though I’m not considered successful by standard measures, I think I’m fairly resilient and I am aware myself of the tremendous effort I have to put in, to manage everything on my own. Let them try…
I was just thinking recently that over the last couple of years, I have made steady progress in health terms. But one drawback is that whilst before I was so focused on surviving the kaleidoscope of symptoms, now I have the capacity to see my life in the cold light of day. My strategy for dealing with this, is that I know that I have genuinely tried to do my best. I try and tell myself I’m doing very well and be kind to myself and others. I am attempting to just enjoy things as much as I can – have a laugh if possible. I do believe that developments will happen with ME/CFS and that’s great to see. But I am getting older and this is my life now.
And I’ve found Twitter and how it works (!) and Whitney Dafoe has an account – Janet too. Whitney is now on Instagram as well. He’s got a great sense of humour and he’s just getting on with things and sharing his life.
Anyway, looking forward to where this goes. I feel that there is a sense of isolation that is almost ambient, as in existing or present on all sides, with this kind of illness. I have become accustomed to its pervasive encroachment on my life and it’s not good.
I love to feed the birds – I live to feed the birds is not what I meant to say…
Seeing beauty in “small things” is an art. Our lives sound similar. Thanks for sharing. ?
Thanks SueAnn, Yes I try to see the beauty that’s just around me, wherever I am, and try not get drawn into focusing on all the experiences that are out of my reach. ?
We need solutions as quickly as possible. Both my young adult children have been sick with this cursed condition – seven and five years now.
My daughter is likely to kill herself if she doesn’t get relief soon. She’s 21 and doesn’t see any point in living this life in so much pain.
Please keep her engaged in this series and in the meantime maybe explore the different options that have been pointed out. One idea is that turning down the suffering will reduce the pain she is in. That is surely achievable.
Please connect your children especially your daughter to the Gupta Program. Full money back if not happy with it. It has helped me significantly. Gives one hope and agency in healing.
I think the work of John El Mokadem in the UK would be of interest here. https://www.johnelmokadem.com/
I took his Foundations of Health course and the idea of hyper vigilance and an overly stimulated and exhausted adrenal system was key to his explanation of how CFS goes on and on. I have recovered at least 50 % of my strength since working with him and am now driving and swimming and walking my dog, all impossible a year ago. Even during a pandemic, his work has helped me tremendously and I think this study would link up with his work well! Thanks for doing this!
Congratulations Susan and thanks for tip. I’m kind of amazed at how many different kinds of programs that are out there.
I also strongly support this. Of course we all want a cure but in the meantime we have to live our lives as best we can. My ME spiralled down from moderate to very severe having driven myself into the ground after a very traumatic encounter with a doctor. I have found it incredibly difficult to cope with both the severity of my symptoms and the anger at how I was treated. One year later I was in an emotional abyss, and deciding that I didn’t want to risk the side effects of antidepressants I redoubled my efforts to work on my mood by other means.
Like others I have tried meditation and although finding it incredibly hard at first (it just left me more room for my super wired anger) it has got easier, but it is still something I do because I feel I ought to, and the routine forms part of my rest periods, rather than because it feels good.
What has helped me the most is learning an instrument. I chose the harmonica as it can be played lying down, and bought a video course chosen for its very short lessons ( < 10 minutes). Quite optimistic given at the time I had chest pain and breathlessness! I found I could manage these most days: a highpoint to look forward to. Not only do I enjoy playing, learning a new skill, however slowly, makes me feel I am doing something, when almost all other activities are beyond me. And the extra bonus is that, now I can play some tunes, I find myself humming them at other times, and even my husband has been caught singing along…. Definitely lightened the mood in our house. I've even made some ME progress and can sit up and play for 40 minutes most days.
I'm not saying it's easy, and there are plenty of times when I approach the abyss again, especially when feeling particularly rough, relapsing, or need to talk to a doctor, but for me working on emotional equilibrium has been worth the effort.
Forgot to add: I would suggest Sarah Ramey for an interview. She has just brought out a book “The lady’s handbook for her mysterious illness”, at root a memoir about her ME experience, but she has read very widely and talked to many other sufferers to put it in a broader (mainly female) context. It’s normally a genre I avoid, but I heard her talking recently and was impressed enough to try it. She writes with both wit and humility, and whilst acknowledging dark times her determination to keep going after severe knockbacks is inspiring.
Thanks Sylvia. I will put her on the list.
Thank you Cort, it’s a great idea.
I’d like to contribute. I think that my life experience has prepared me well for this life of pain. I started with self hypnosis and martial arts 50 years ago. Then followed a path through Taoist Qi Gong, Tai Ji, and now practicing Shinnyo-en Buddhism for the last twenty years.
It’s been a nine year slide from taking horseback riding lessons with my daughter, to losing my career, to losing access to the outside world, to now being a little above 20 on the Peterson scale (kidding myself – I read too much and pay for it). I can’t keep up with the pace of the wonderful conversations here.
The last few years have been very painful. Unfortunately I am all too familiar with enduring long-term pain. I find that breath work is very helpful, and continue to experiment with different techniques. Also lessons from Buddhist teachings have been very helpful. As others have mentioned – Joy, Gratitude, and Acceptance are powerful keys.
I’ve heard that Greed, Anger, and Ignorance are The Three Poisons. As such, I choose not to indulge anger for its own sake, but rather to hold it to acknowledge it – much like pain – and then transform it into energy for change. When the system angers you, harness the energy for activism… Use adversity as a springboard to move forward positively.
So Buddhists have learned to focus on Compassion and Loving Kindness to strengthen the prefrontal cortex, and to tame the poisons of the amygdala. True joy can be generated through acts of kindness towards others.
Thanks again to Cort and all of you who contribute to making Health Rising what it is. It is a great kindness to all of us.
Aloha.
Thanks Tab
I will be in touch 🙂
What a wonderful initiative! There’s a strong genetic component in my family and sadly therefore a number of chronically ill, including myself. Eastern philosophies and meditation practices have been pivotal in improving my quality of life, making peace with reality and finding enjoyment in the small things. I’m happier now than ever, even though health challenges are ongoing.
Have you considered the stoic philosophers as well? They have been really helpful to me too. It’s shifted my expectations about life and better equipped me to handle reality.
Looking forward to following this series
Yes, happy to participate, and sending a donation to support this project. I’m putting my all into getting better. Perhaps never fully well but in regaining quality of life. I’ve been helped in reducing suffering by much of what folks have written: Toni Bernhard, Tara Brach, Rick Hansen. Also Gupta Program, which has a strong spirtitual /emotional component. Meditating can be hard when ‘tired but wired’, I’ve found Sacred Acoustics really great for effortlessly accessing a calm meditative state by letting the sounds carry me (binaural beats with calming sounds). Free download and info at https://www.sacredacoustics.com/
Thanks Karen….and thanks for mentioning Sacred Acoustics. By the time we’re done we will have a nice list of resources. Something for everyone I think.