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My Understanding of CFS/ME and How To Heal

Valentijn

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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.
That's a very unlikely theory. There has been prospective research into ME which disproves the emotional stress/traume theory, and supports various infections as triggers.
 

Sunday

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This is a bunch of new-age blame-the-victim bullshit.

It's insulting and inappropriate.
Call it what you like - and I understand if you are disenchanted by misleading versions of this - but exactly by using my own ever-evolving version of this method (combined with some other things) I have dropped literally hundreds of neuro symptoms and a bunch of other symptoms, too - to the point where I am no longer bedridden, have only minimum brain fog (I still tire easily, and the fog happens then, but not to the same extent), can walk without tripping and falling, can talk on the phone without its being the only activity I do that day - in short, I'm getting a life. It isn't quite as easy as "just relax', but that's an important starting point. I do understand that there are a lot of misconceptions about how this works, and a lot of incomplete versions of it that won't get you there, but all my changes of diet and following strict supplemental protocols and buying all kinds of "supposed to work" stuff didn't do much, until I added this element. That's my experience, and I am living proof of it. It has nothing to do with being "blamed" for your illness - that's a misunderstanding of how this works. It's about getting beyond the notion of blame altogether - it takes a ton of energy, and doesn't really help anything whether we're blaming ourselves, our culture, someone who made our illness worse (been through that one!), and so on.
 

ChrisD

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When I arrived at this forum and this thread, I was very naive to this illness and still learning about its pattern. I still stand by some of the things that I said earlier in the thread, but only in the sense that they can help manage the symptoms of ME/cfs. Perhaps some people have found some level of remission through spirituality and meditation, but they are a minority and it is by no means a cure.

As time has passed, after plenty of meditation and mindfulness, I have come to realise that I can scratch the surface of this beast of an illness and calm the nervous system a bit but its is becoming ever more apparent to me that I have an autoimmune disease/viral illness and it needs more than what we are capable of providing ourselves with. This may sound defeatist but I have tried SO hard with meditation, yoga, breathwork, cold exposure and so on, yet cannot achieve a sustained path to remission.

I'm sorry if I offended anyone with my naivety, I was just hopeful that if I could find all the pieces of the puzzle, then I could crack it. I still have a few more pieces so I am not giving up!
 

Valentijn

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This may sound defeatist but I have tried SO hard with meditation, yoga, breathwork, cold exposure and so on, yet cannot achieve a sustained path to remission.
I'm glad you're being a bit more sensible, but I fear it's still for the wrong reasons. You couldn't cure yourself, ergo you now accept that it's not possible for the rest of us ME patients to cure ourselves. But if you had a random remission, you'd still believe that you'd managed to cure yourself via your enlightenment, and everyone else could do the same if only they believed and tried hard enough.

It comes down to a matter of science - and science proves that meditation and positivity don't cure any diseases, nor does eating right, beyond correcting basic nutritional deficiencies. Illness isn't a test, and people who stay ill haven't failed it. I hope you can fully accept that, especially for yourself.
 

ChrisD

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You couldn't cure yourself, ergo you now accept that it's not possible for the rest of us ME patients to cure ourselves. But if you had a random remission, you'd still believe that you'd managed to cure yourself via your enlightenment, and everyone else could do the same if only they believed and tried hard enough.
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That's fairly insulting @Valentijn that you believe after this roller coaster experience that I could be so flippant as to start preaching upon a 'random remission', in this situation, my attitude would be to use my new found energy and focus to campaign and explain to those who don't understand that I was lucky to recover and help achieve funding and steps towards treatment.

Judging by your replies to many others on this forum, I do think that you could be a bit more careful how you respond to people - particularly when making a self-admission.

Besides their is no harm in maintaining positivity towards remission, how could it possibly hinder any kind of recovery?
 

tinacarroll27

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I have come to the conclusion that nothing psychological can cure this illness, no more than for cancer or MS. I have tried CBT and it made no difference. I have been meditating for years and I am still ill. We have to stop looking for the hidden trauma that doesn't exist (it's crazy!!!! trying to force trauma on people that never happened). We need to look at the obvious, that people with ME are physically ill, probably something gone wrong with the immune system and our metabolism. We need to relay on good quality research like at the OMF and stop looking to quackery with no proof to support it. I think we have had enough of quackery to last a life time!!! I want the future to be about great quality research and finding a biomarker. I am sick of hearing about positive thinking!:bang-head::bang-head::bang-head:
 

Valentijn

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... in this situation, my attitude would be to use my new found energy and focus to campaign and explain to those who don't understand that I was lucky to recover and help achieve funding and steps towards treatment.
If you had a random remission while trying a certain type of meditation or other therapy, do you really believe you wouldn't tie your remission to it? It happens all the time, and we get to read about various ridiculous cures in the Daily Mail as a result. And that's from people who didn't even believe that their special regimen or therapy would work before they tried it.

Besides their is no harm in maintaining positivity towards remission, how could it possibly hinder any kind of recovery?
It should be very clear how unwarranted positivity can harm people. It can result in blaming the victim who doesn't recover, and devastation and depression when earnest efforts fail to get the expected results. And we also get into a bizarre world where the expectation of positivity is a burden to patients who just want to be themselves.

If positivity is someone's thing, that's great. But it's not a cure, and it doesn't help to achieve a cure. There's never any basis to suggest that people will do better if they engage in more positivity.
 
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I think it takes a village to start and sustain the long recovery process from ME.

1) ME health professional that can prescribe Rx treatments (can be expensive)
2) Supportive framework of health professionals that can help manage symptoms
Examples could be...
Chiropractor
Acupuncture
Massage therapist
Mental Health Councelor

Some types of care may or may not help. For example Meditation or mindfulness may be difficult because it may serve to remind us how much physical pain we are in. To survive, we may need to think a certain way or be in a structured routine. It may not be wise to jump into early childhood trauma with a councelor if we are already living in a survival mode. We deserve supportive care to meet us where we are right now, and need highly flexible providers to think out of the box and adapt the care as we make changes. Being positive may be helpful, but it may be an unrealistic expectation.

I feel the longer we are battered by ignorant people and suffer from isolation, the harder it gets. Based on my observations, a once thriving happy positive person, over the years with ME, could develop feelings similar to a prisoner living in a POW camp. Even if they are lucky enough to find some help and gain some improvement, they could develop a form of PTSD.

It seems the journey can be highly complex in every way imaginable. Granted for some lucky people, the journey is much easier. But the lucky people can't assume that everyone else can follow in the same exact foot steps.

I enjoy hearing about how some people get better, and like to learn about what regimen they followed.
 
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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.
@muddybird, your experience with ME/CFS is a lot like mine! I was diagnosed 4 years ago, along with the concomitant conditions MCS and fibro. House/bedbound for 2.5 years. As you, I had to address toxins, gut, adrenal and environmental issues to crawl out of it. I'm still getting the occasional flares of pain/fatigue/malaise, and get knocked down by the common cold or flu bug (which I get more often than healthy folks). So not quite recovered just yet. I saw this thread on spirituality as I was curious as to what people's experience has been. I definitely integrated it with my healing path, along with dietary changes (healing the gut), pharmaceuticals (DNA testing), herbs, physical therapy, and moving physically for mold and chemical avoidance. I heard about "Biology of Belief" and it is an intriguing concept. What started my journey with spirituality is reading Louise Hay's "You Can Heal Your Life," using positive affirmations to encourage healing. I think it has helped me. She addresses a lot of conditions there, and with CFS she said it can be perpetuated by not doing or feeling "enough" or adequate in some way. I also tried visualization techniques to help manage symptoms (especially pain), which minimized it, and I would focus on a picture of when I was well, to get my mind and body primed for wellness. I think it is all part of the journey towards healing-spiritual components support it. I am no longer bed/homebound like I was, can actually exercise moderately, work part time, take the occasional class. Got a few things published as well. :) You're absolutely right that there are no quick fixes. One needs to adhere to all these things that helped over the long haul.
 

cmt12

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-We can conceptualize the reason for any action as going from an undesired to a desired state, or where we currently are to where we want to get to. If we better our understanding of both a) where we currently are and b) what we should be aiming at, then we can act more effectively.

-Reason, empiricism, traditional wisdom, and the scientific approach are very powerful but there is a limit or a cap to these methods, in which the answers we need are beyond their reach.

-In our hearts, we don’t know exactly where we are. We have beliefs and shared cultural ideas that shield us from this unknown, from chaos, but in our hearts, at a deeper level of being, we don’t know where we are. Encountering the unknown/chaos in this way makes us feel isolated and fearful so we avoid it, but not knowing where we are — not acknowledging that we are in the unknown — causes us to not be able to get to where we want to get to (desired state). *Step one is to gradually stop avoiding this truth.*

-The other problem I see is that people don’t aim high enough. This is understandable because when we aim high, then we open ourselves up to heartbreak, which is like a psychological injury that we carry with us. After enough of these injuries, then we become self protective, even cynical, and play it safe. We become less aspirational/idealistic and more practical/empirical.

-There is a middle ground to this problem. We can take on the mindset of saying ‘I am not going to aim high unless the world gives me a strong enough reason that I should do so’. We can insist on an undeniable direct experience before we expose ourselves to that type of vulnerability again. However, to do so, we have to open ourselves up to the possibility by looking for it. It has to be a top priority and we have to engage a little deeper with reality, so that we are able to open ourselves up to feel the experience.

To sum up, familiarize yourself with the unknown in your heart and put reality to the test by insisting on a direct experience to provide an invitation in order to aim high again. Once that transcendent sense of meaning is back in our lives, then it’s up to us to validate it by holding onto and remembering it. If we do that, then we are back in touch with our conscience, which is where we need to be.
 

Float

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Its an old thread but....I understand this clearly, and I am a rational 'spiritual' person. In the context of my won journey, I understand the nuances of polyvagal theory, 'trapped' energy, benefits of meditation as a battery charger for people with ME and a soother to the amygdala/ANS/hypervigalence. I get the role of acceptance - and in its own way, ME symptoms forced me to intuitively go with the flow, listen to the body subtleties as cues for stop/go. Ive been forced to accept me as I am, even when it seems others can not do the same. I am forced not be in the mainstream as thats a life im unable to sustain. I love the mergence of spirituality and science. Unfortunately it gets very misunderstood and is not for everyone. Body mind connection is very clear to me. However, it wasnt always, even though I was well educated in it. You cant heal what you dont know. And so I had to wait until the information about my triggers spontaneuosly came into mind, and then even longer was/is the journey to discover what to do about it!
Everyone is different. Every day is different.
 

matt321

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I’m glad this thread is alive and well. CMT12 has taken the time to write the road map for recovery that has been discussed in many recovery circles.

Trauma as described by beers Van see Kolkata, Kyle Davies, Gabor Mate and many others isn’t to mean a specific incident but rather the creation of mind/body feedback loops that are essentially “recorded” as unexpressed emotion at the cellular level. Just as a computer programs layers of code on top of one another, these authors as well as deep mediation and observance of nature outline how the body does this as well. Uncovering these layers allows them to release just as CMT12 described. Lots of fantastic reading being proliferated now regarding psilocybin, ayuasca and Vipassana. They are all extremely effective in putting these principles on clear display.