My Understanding of CFS/ME and How To Heal

[crowquill]

Hi all

I have been meditating for 18 years and was soon to ordain as a Zen priest before experiencing a recent dip in illness.

Meditation has been very helpful for me but not a cure. I have noticed that different people find different keys to 'unlock' their healing. For some, it is physical treatment in the form of conventional medicine or nutritional therapy (mitochondria, methylation protocols, chelation for heavy metals etc), for others it is working with their emotions, autonomic nervous system and such like. Most of us find that a mix of methods is required but that combination seems very individual based on the triggers for our illness, our own genetic make-up and so forth.

With this in mind, having one person proclaim that what works for them is the solution for everyone seems a little optimistic at best. As a former Buddhist teacher of mine once said when we say we know what is best for us, we speak from a place of knowledge but when we claim to know what is best for others, we are usually wrong and over-generalising based on our own experience.

Of course it is great to share what works for us as we can learn from each other and try out new ideas and treatment protocols. Doing that with an attitude of sharing with equals rather than preaching often feels best though.

All good wishes
Andy

 

[cmt12]

I agree when it comes to symptom management that treatment will vary because the severity and how the imbalances present themselves will differ person to person. The point I was trying to make is the root cause, or that which causes the imbalances, is universal and singular (and hidden).

Once it is recognized in yourself, it becomes clear that it applies to others. That's just how deep introspection works in my experience, which I'm thinking you may agree with to some extent. I shouldn't have used the term 'meditation' because it's too subjective. Really, if I had to do it all over again, I wouldn't have made this thread at all because I know now there was no chance it was going to be helpful but I thought I would give it a shot.

 

[crowquill]

I am sure you made the thread with the best of intentions and there is every chance it could be helpful. I wonder, though, if you offered it up more as a 'this worked for me' rather than a universal root cause, the responses might have been different?

For me, deep introspection is only likely to work as a cure if the imbalances are primarily mental. If your CFS is largely caused by genetics, such as problems with methylation or other metabolic function, you are not going to fix it that way.

All good wishes to you. I think that starting a thread on this topic was a good thing to do and it really does have some mileage. Perhaps it could be broadened out? Many people would doubtless like to discuss introspection and illness and you clearly have a lot of experience to share.

Andy

 

[student]

Friendship – in this walk, YES. Stay with us Cmt12!! I found your thread helpfull.
– Continue, in forming a wounderfull „Marathon“- CFS-walking-family.
Steffen , Germay

ps. They are well known, no? There ist DRNS (A. Hooper), there is Gupta (GB), there is Loz Evans http://www.arationalapproach.com/ =this is the most low cost resource – to start with. And the Forum Planet thrive

 

[Rlman]

At 1 minute on in this video you can see a polar bear going through the discharge process:

Quick and easy because the bear doesn't have any other repressed traumas. This is not how it works with humans since we have continuously accumulated and passed on the imprints to the next generation. That energy release at the end will not occur until you have released all of the imprints one by one. For me, how it works is I'll have tight muscles throughout my body, which I feel most fully in my head and neck area. Over a period of usually a couple of days, the muscles will contract and then release (as long as I am in a relaxed state) and then immediately I'll feel tightness in a different area. Over time, I notice the imprints getting deeper and deeper like a cylinder narrowing in. It doesn't matter if I am releasing the first imprint or the last, the stress response is still present. It is not a gradual relief of symptoms - it is one big release at the end, in which the body re-balances.

The process is automatic as long as the imprints are completely unrepressed, which requires meditation, awareness, and a lot of pain tolerance.

can you give more details of how you release the repressed imprints?

 

[muddybird]

If you want to release the trauma imprints turn to the work of Peter Levine. He is the pioneer who forty years ago discovered the link between illness and trauma and developed exercises over time to release the memory held in the tissues, as this polar bear is doing in the video above. I believe these methods are contributing significantly to my recovery. I am using this work along with a heavy meditation practice and the results are no short of amazing if slow. Patience is a good ally to healing. Two years ago I was housebound, sometimes bed bound, but now up an about and caring for myself and working a small bit (self employed as an artist).

http://www.soundstrue.com/store/peter-a-levine-5518.html

http://www.amazon.com/Peter-A.-Levine/e/B001JS4POY/ref=dp_byline_cont_book_1

http://www.dharmaocean.org/

 

[Groggy Doggy]

Really, if I had to do it all over again, I wouldn't have made this thread at all because I know now there was no chance it was going to be helpful but I thought I would give it a shot.

I am glad you found a process to improve your health. I hope you are open to the scientific understanding that ME is a complex illness. I have used different modalities to heal myself in the past for less complex illnesses. There is merit to many forms of healing. I believe we are on our own unique path to wellness. I hope you continue to improve and allow the PR community to find their own way too.

 

[digital dog]

When I meditate all I can think of is how much pain I am in and how sick I am. I'd love to be all zen and calm and go off to somewhere lovely but It is impossible.
Tried Jo Dispenzer's 'placebo' for six months but gave it up when I realised that it wasn't helping in any way.
Cmt12 you sound like a lovely person and thanks for posting. I wonder, however, what response you would get with a cancer forum or parkinson? Not being facetious, just wonder how other people with serious illnesses would react.

 

[muddybird]

As I understand meditation it is not about becoming calm or going off somewhere lovely but rather about developing the ability to completely receive what is happening each instant of your life without resistance. It is hard work and deeply worthy of the effort for it is actually resistance to what is unfolding in your life that causes trouble and exacerbates illness. This is not what Joe Dispenza teaches and, as you found, his approach does not work. Try Pema Chodron's "Getting Unstuck", from the library or some such.

I have CFS and MCS, ill since 1999, collapsed in 2011 and was bed bound / house bound for three years but am crawling out of it, I just worked my first art show in 13 years today, and I agree with CMT12 that working with trauma, through Peter Levine or Bessel van der Kolk or David Bercelli, is powerful healing for pwCFS. I also have an hour a day meditation practice. It takes a very long time for a series of insults, genes, stress, toxins, gut, adrenal and environmental issues, each has her own list, not to mention difficult relationships, to get us to collapse. It takes a very long time to get better as well. Meditation is something to try for years on end. The results are subtle but deeply healing. The quick fixes are rare. One need to find good practices, diet, hydration, supplements, severe stress reduction of every kind, each has her own list, and stick with it over a very long time. Cherish yourself fiercely.

 

[cmt12]

I'll be providing more info soon enough for those that are interested. I made this post over a year ago and while the claims I made are true, at that time I didn't have full clarity on the process to get there.

One thing I want to reiterate is the approach that I'm sharing is not supplemental to other treatment plans. If our health is a house, the currently available strategies all focus on remodeling the first floor of the house, on symptom management.

The core of the problem, however, has to do with the foundation and overall structure. The only way to solve the problem is to tear the entire house down. Only the owner of the house can tear his own house down.

All of our lives we've been trying to build up our house and our self-talk and impulses push us to preserve it. Yet, the solution requires that we go against some of those deep aspects of human nature. Medicine, religion, and philosophy are all trying to solve the same problem but they don't know it.

 

[cmt12]

*To those of you trying to solve CFS/ME on your own, consider making a pivot*

We live in a time of connectedness and information. Usually, when there is a problem, we can easily access the necessary information and apply the solution.

Sometimes there is either currently no answer or so many answers, that the solution isn't clear. This is the place I see CFS/ME currently. In these situations, I usually try to figure things out on my own as many others on this forum have attempted to do as well.

Looking back, I am able to see why I was sometimes able to figure out some problems and not others. The times when I succeeded were when I was able to, after initially failing, pivot or shift my focus to what was causing me to fail. Once that issue was solved, then I was able to solve the original problem.

I am proposing that those of you who have the desire to take on CFS/ME make a similar pivot. As I'm sure many of you can relate to, I have had countless instances throughout this journey in which I believed wholeheartedly that I had everything figured out.. only to eventually have the air sucked out of my balloon.

At some point, I was able to consider shifting my focus to (at the time) an unknown deeper issue that was distorting my ability to accurately analyze the original health problem. Until this deeper issue is solved, it would continue to distort my perception. When I would feel my symptoms and the resulting desire for answers, I would train myself to shift my focus on the unknown underlying issue. You cannot solve a problem unless you focus on it, so by shifting my focus I was giving myself an opportunity. Whereas by instead focusing completely on the CFS/ME problem, I was giving myself no chance to solve either.

Now, of course you can say the ability to solve ME/CFS is outside of our individual control. I get that. But for me the waiting game wasn't good enough. I was going to open myself to any possibility that solving this was within my control. This post is for any of you who feel the same.

Let me reiterate what I am saying for clarity. I am not saying that CFS/ME is caused by distorted perception. I am saying the ability to understand it is blocked by distorted perception, not just for patients but for everyone involved including doctors and other so called experts. Is this a possibility to you? Look at the landscape and consider. Then also consider pivoting from ME/CFS to what is causing this distorted perception.

 

[ukxmrv]

You are sounding like some of the Psych lobby who insist that PWME and CFS must have experienced a trauma before their illness and try and pin their symptoms on this.

I've met patients who have had their illness blamed on an inability to accept that they are not over a bereavement or job loss or something similar.

There is nothing deep or philosophically clever about the idea.

I've done better out of a week's worth of antiviral drugs than I did on years of looking at my life and life events.

You could be searching for something that simply isn't there and wasting resources when you could be exploring treatment options and making a real difference.

Huge damage has already been done to ME patients by the approach you suggest by doctors for decades. If there was anything in their theories we would know by now.

Don't waste your life flogging a dead horse.

 

[cmt12]

I've done better out of a week's worth of antiviral drugs than I did on years of looking at my life and life events.

It sounds like managing symptoms still has value for you. It didn't for me. The context had to be right before I could go in this direction: I had to be able to reject anything that wasn't a cure, I had to decide that a cure is possible, and I had to decide that a cure was within my control. Those conditions have to be there first. I am only speaking to and wanting to hear from those people that meet those three conditions.

 

[Valentijn]

I am only speaking to and wanting to hear from those people that meet those three conditions.

Well, you're being heard by a lot of different people here, and they're going to respond if they feel so inclined. If you want control over the responses you get, you might have more success with a blog post.

 

[ukxmrv]

It sounds like managing symptoms still has value for you. It didn't for me. The context had to be right before I could go in this direction: I had to be able to reject anything that wasn't a cure, I had to decide that a cure is possible, and I had to decide that a cure was within my control. Those conditions have to be there first. I am only speaking to and wanting to hear from those people that meet those three conditions.

I think you maybe are misunderstanding me? Your approach isn't new. It's been tried before. I've had times of my life (before the current understanding and drug regimes) when I have been desperate to try your approach. I've seen other people try it before and some with terrible consequences.

You want to hear from people who are at your stage of desperation now and in the same type of desperation with the same magical thinking hopes.

Ignoring the patients who have tried the approach and failed isn't always a healthy way to look at a problem. I'd hate to see people suffer even more with this disease.

In UK NHS clinics today ME and CFS are being encouraged to blame your symptoms on a trauma even if they don't feel there is a connection and then work through these so called hidden emotions. I heard of someone recently who saw a NHS doctor and this was exactly their approach.

We need to learn from the disasters of what people with ME and CFS have been forced to do and move on.

 

[cmt12]

I think you maybe are misunderstanding me? Your approach isn't new. It's been tried before. I've had times of my life (before the current understanding and drug regimes) when I have been desperate to try your approach. I've seen other people try it before and some with terrible consequences.

You want to hear from people who are at your stage of desperation now and in the same type of desperation with the same magical thinking hopes.

Ignoring the patients who have tried the approach and failed isn't always a healthy way to look at a problem. I'd hate to see people suffer even more with this disease.

In UK NHS clinics today ME and CFS are being encouraged to blame your symptoms on a trauma even if they don't feel there is a connection and then work through these so called hidden emotions. I heard of someone recently who saw a NHS doctor and this was exactly their approach.

We need to learn from the disasters of what people with ME and CFS have been forced to do and move on.

Look, I'm aware of all the objections. I had to hear and overcome them from within myself before ever interacting with anyone else about this subject. Failure is part of the process.

 

[Mrs Sowester]

@cmt12 Hi, sorry if I'm asking a question you've already answered - I'm too fuzzy to read the whole thread. But are you saying you have recovered from ME?

 

[Groggy Doggy]

I am partially healed but feel I am on walking forward on the road in the long journey to a better life. I still have my ups and downs, but can see an overall trend of improvement. For me what has helped (so far) is treatment (mix of Rx's and herbs) by a doctor that could 'think outside of the box' and get to the bottom as to what was not physically working in my body. My doctor recommends different treatment options to address each dysfunction, but at the same time I am always in charge of how to proceed. It takes time to figure out what is going wrong with my health and time to figure out the best cocktail mix to address it; its an ongoing interactive process. There has been no quick magical cure.. no 'one stop' solution. For me, its all about gaining improvements over time (regardless of size) and having continued hope there will be more good to come in the future.

 

[ChrisD]

My Understanding of my M.E./CFS/Fibro is that through emotional stress and adrenal fatigue, I allowed my immune system to become really low over a two year period before some kind of Virus initiated the Neuroimmune response and general confusion between nervous system and immune system. I have always considered the recovery process to be like some kind of re-calibration of Mind, body, spirit, ANS, SNS, PNS, Lymphatic and so on through diet, supplements, therapies, meditation, mindfulness, yoga - all of which have good effect when combined and I am definitely recovering.

Like many others, I am keen to dismiss the Psychosomatic theory as the way my symptoms present, it feels as if something is within, spontaneously effecting my performance (I.e. a virus/retrovirus). But I don't think we can dismiss emotion and psychology entirely, it seems that in most cases it is a prominent issue and if it is not then it has not been realised yet.

I believe that ME/CFS is no different from any other disease in that it is real and physiological, but through lack of adequate treatment, it is the clearest observation of the Mind-body connection. There are many accounts of people wit other illnesses who avoid Pharmaceutical drugs and heal/recover from disease with a holistic approach, yet because drugs are available- most people will opt for these. I am sure CBT + GET could help a small percentage in other illnesses, just as it does in only SMALL percentages for CFS. It's just narrow-minded of modern day medicine.

ANYWAY, when I had my first onset of true M.E and was bed ridden, I immediately took part in the lightning process. I don't believe it is a miracle cure as you can see in another post of mine but do believe that it opens up the opportunity to recognise the mind body connection and the opportunity to override and regulate our faulty immune system.

I proceeded to meditate, yoga, breathwork combined with Nootropics like L-theanine and large doses of probiotics which had a SIGNIFICANT effect on the calm in my mind and potential for dreaming, visions in meditation etc. This was a few months ago, and I felt like I was going through some process of aligning body and mind, having powerful healing and energising visions in meditation and acupuncture (At one stage seeing a rotating double helix p.s. I wasn't on anything!). With my mind in an 'Alpha state' my dreams were so vivid that they would spell out the clear issues in my sub-conscious mind and sometimes would become lucid, giving me opportunity to act on them. So I keep a dream diary and have become more mindful about the conscious mind. I now understand that this is all part of the healing process despite not being physical or physiological, yet it will help in serotonin, cortisol, adrenal function which all contribute to further fatigue in ME/CFS.

I do feel as if this horrid experience is a spiritual test to encourage me to harness the power of the mind over the body (which is not easy at all AND definitely shouldn't be considered a standard medical treatment)

 

[Basilico]

I feel like this thread should be deleted, because apparently it won't stay dead, and I'm worried that people dredging up does more harm than good.

@cmt12 , this is a quote from YOUR spiritual beliefs forum: "But before you can solve a problem, you have to understand it completely."

No one even comes close to understanding CFS/ME. You can't post that you have the answer to something that you don't understand yourself.

Also, it is evident from the consistent refusal to answer the question "Do you have ME?" that you don't. I've tried looking at your other posts, and they are all the same: trying to position yourself as a meditation guru with all the answers to physical problems that you have no experience with.


Here is another of YOUR quotes:
"I looked at the following illnesses and symptoms and determined that they are caused by the imprints:

PTSD, Gulf War Illness, CFS/ME, ASD (Autism), Fibromyalgia, ADD/ADHD, GAD (anxiety disorders), bacterial infections (Lyme), Upper Respiratory Infections, fungal infections (Candida, Valley Fever), Depression, Suicide, Schizophrenia, bipolar disorder, OCD, epilepsi, stroke, Leaky Gut, POTS, IBS, specific phobias, personality disorders, eating disorders, asthma, allergies, insulin resistance, kidney disease"

You've "looked at" CFS/ME? So you are someone who spent a few minutes reading something about CFS online and have determined that you have the cure for it which is...mediation. Brilliant. Why didn't I think of that?