How I Recovered From CFS/ME
Here is a conversation between a couple of people following a podcast with Dr Rangan Chatterjee and Dr Howard Schubiner, discussing the relationship between persistent pain and the neural circuits driving it.
It shows different perspectives of one person challenging the host on suggesting this mechanism as a cause of pain (Mrs V) and another of someone attempting to offer an alternate viewpoint compassionately (Mrs K).
A lady who recovered from Chronic Fatigue Syndrome/ME describes how she changed her perspective on pain and how that resulted in recovery. She presents her ideas in a compassionate response to the individual who appears offended by the topics and how they were covered.
The resistance to new ideas about the origin of pain frequently appears in those heavily invested in the beliefs that have become linked to that pain. It can occur with clinicians and patients when considering what they always thought to be accurate as possibly not quite as absolute as they once thought. Even with facts supporting a new approach, the emotional attachment to old ideas, patterns, and behaviours make hearing the clarity of the message and integrating this information quite challenging to our brains and bodies.
This human dialogue between someone in pain and someone pain-free is fascinating. We can all learn so much from listening to a story and telling another. There’s no guarantee that any minds will be changed, but it illustrates how if we slow down and create space for anyone who feels hurt by new information, it may expose ways to be heard, to understand points of view and perhaps plant seeds which may help to consider situations through a different lens.
See what you think about this dialogue, and you may see how the shift in perspective may be starting to appear.
I Almost Entirely Disagree
Mrs V - I almost entirely disagree with this one and your guest. I am saying this from the perspective of being severely harmed by medical professionals who mistreated me for nearly ten years and called my symptoms "the mind-body" and other psycho bullshit.
So after ten years of inhuman suffering, I was finally correctly diagnosed, with a rare condition, waiting for the second surgery and finally having some life and hope. As a medical professional and a mistreated patient, I could write now for hours what and why this Dr Sarno's "narrative" is dangerous and wrong.
Especially in an era of functional medicine, we know that millions of reasons could be behind patients' symptoms, including fibromyalgia when we know that even anxiety /depression could be caused by inflammation in the brain as a reaction to multiple factors.
I worked many years in rehabilitation centres for spinal cord injury and diseases, and I will never forget a patient, a lady who ended with tetraparesis/paraplegia for not going to the cervical spine surgery on time due to her disc problems because she was listening to charlatans who were saying she doesn't need surgery.
Your guest says 30% of people with MRI disc spine incidental findings problems don't have symptoms. Others do have, so immediately, they are labelled psycho, childhood trauma, and other nonsense. WE SHOULD TREAT PATIENTS AND NOT THEIR MR RESULTS.
If someone's MRI shows bulging or disc protrusions, this is equally important as someone's clinical symptoms. If he has symptoms, then those symptoms must be taken seriously and not send the patient home with some ridiculous narrative of how others also have that kind of results of MRI and tell him to start journaling and go to psychotherapy.
Even in cases where people have FND, a Functional Neurological Disorder (you can read about it on fnd.hope.org), you will see that multiple of those kinds of patients do not have any psychological problems or adverse events in their life. And science/medicine has no idea why this is happening.
Yes, it can be overcome with neurological (not psychological) rehabilitation.
Yes, it could be that brain regulation centres are "dysregulated" and that brain is stuck in some overprotective circle, but no, you do not have any right to call it "psycho".
So please go into the topic more deeply, and don't spread misinformation because people can get harmed.
Your guest is calling pudendal/trigeminal neuralgia FND! It is shameful that someone is not introduced to pudendal neuralgia or nerve pain and is so brave to talk publicly about such non-senses. Please make one podcast with the women who lost years of their life for being called crazy, mistreated, GASLIGHTED, and not being treated on time
They now have lifetime consequences because their nerves weren't operated on time. So we have a new medical speciality:neuropelveology, which is yet in developing, where gynaecologists are operating pudendal nerves and other pelvic nerves that are affected by endometriosis, scars, mesh implants complications that injured nerves etc.
All those women were until recently called crazy and psycho and were losing years of their lives with ridiculous psycho narratives. Most of them are wholly cured when endometriosis, which is eating and destroying those nerves, is removed from the nerves. But, of course, 100% of those women have been called crazy for years before. I am fighting against prejudices and uneducated, primitive psycho bullshit for the rest of my life.
Mrs K - Dear V - That is appalling that you were misdiagnosed and horrendous for you to have endured so much suffering.
Historically the medical profession has been misogynistic - let's hope that is changing. You are a woman, and it does not surprise me that you have been dismissed, misdiagnosed and mistreated.
However, I AM surprised that "medical professionals" have even said the word "mind-body" to you - it is not part of their training, and for many people (yourself included by the sound of things!), it is something they struggle with. Thorough examinations must be done to determine if the patient's problem is structural - is there a tumour, fracture, infection, or inflammation? If the answer is NO, then keep an open mind. In refusing to consider the mind-body approach, you end up condemning someone to a lifetime of pain and no hope.
A mind-body approach was not helpful for you. Still, after having had ME/CFS for decades, it was exactly what I needed and has freed me from a life of constant pain and disability that the medical professionals were telling me there was no cure for and that I would have to "manage", which turned out to be entirely untrue for me. I wish you health and happiness via whichever route works best for you. All the best, K
Mrs V - May I ask what helped you get better?
Mrs K - Do you want to know because it might help people or so that you can shoot it down?!
Mrs V - I want to know because my husband suffers chronic fatigue. But, as I already said, there can be multiple reasons why someone can have chronic fatigue. He has gone through various roads, including antidepressants and psychotherapy, which didn't help him, not 1%.
Mrs K - Hi V - I WILL reply, and I will try to do so in the next 24 hours, but I am very busy, and although I am well, I still have to be careful not to overdo it. K xx
Mrs V - ok, thank you.
Mrs K - Hi V, I'm back! Your question: "May I ask what helped you get better?"
Yes. To get myself OUT of ME/CFS, I had to understand how I had gotten myself into ME/CFS in the first place.
For most people, it is many stressors, possibly starting in childhood. For example, the body's survival system is on high alert due to all these stressors, so sometimes it only takes one major stressor like a virus or a traumatic event to make the brain decide to "protect" us with Chronic Fatigue Syndrome (and other pains and symptoms too).
Sometimes it takes a long-term traumatic event like being in an abusive relationship to trigger CFS. Some people are Highly Sensitive People (HSP) - all their senses are more highly tuned. So they are more easily overwhelmed by life events (that is, if they don't have ways to protect themselves and can't make sufficient recovery space for themselves).
Being an HSP and having certain personality types can make it more likely for someone's brain to try to protect them by creating CFS. Some examples of personality types are Perfectionist, People Pleaser, Workaholic, High Achiever, and "Goodist".
To get well, I had to look at my past and my patterns and work out what had happened to make me unwell in the first place.
Then I needed to convince my survival system that I was SAFE now - not easy because simply having a chronic illness makes you feel permanently in a scary place! Chronic disease can prevent people from working and looking after their children; relationships crumble, financial difficulties, support systems, and social life can fade away.
I had to make many changes because the family home was not a safe place for me, and I had to make these changes whilst still ill. I began being sick after the birth of my second child in 2000. I battled until 2009 when I gave up my job as a teacher. I got WORSE up to 2014 when I was bedridden and decided that I had to put my health first and prioritised getting well.
From 2014 to 2021, I struggled with ups and downs - getting better from CFS is not linear! But from every "crash", I learnt another lesson, and most importantly, I never gave up hope.
As well as functional and physical changes, many past issues needed to be put to bed. Traumas required to be resolved/released. Many of my attitudes had to be changed. I did everything I could to calm my nervous system down. I meditated, released trauma, and practised "pacing" so as not to overdo it, but still, I always had symptoms and was still "crashing" regularly.
This was up to the summer of 2021 when I discovered Dr John Sarno and his theories about TMS (in my opinion, it doesn't matter what TMS stands for - it just means all the symptoms our brain gives us to keep us safe). So I researched all I could regarding Mindbody health (there's a lot of information for free on the internet). After reading Sarno's "Mindbody Prescription" book, I realised that my brain was creating symptoms to protect me from what it saw as dangers - from activities it saw as dangerous.
Ultimately, all movement, all activity, and any exertion (even mental activity) were seen as a "threat" because it all exhausted me. Thinking, lights and sound were too overstimulating and overwhelming for my highly sensitised nervous system.
My brain decided that coffee, sugar, and alcohol were too stimulating, and I got migraines and nausea. I have heard of people's brains choosing mould and all chemicals as "dangerous", even in tiny amounts.
My brain was also distracting me with symptoms from subconscious emotions that it feared might explode and be, therefore, also "dangerous". My brain thinks that displays of anger, for example, would be the most disgraceful, destructive thing I could do. Everybody's love would be withdrawn. I would be ostracised and die abandoned, starving and alone! Better be focusing on pain, nausea, dizziness etc., than that!
On reading Sarno's book, some symptoms stopped immediately; some took a little longer, but by December 2021, I was SYMPTOM-FREE for the first time this millennium! I can feel the symptoms trying to come back sometimes, but I know what's going on now and can stop them.
I hope this is helpful.
The main thing for your husband to do is to stop the FEAR he has of his illness and all the things he thinks trigger his condition - there is nothing to be afraid of; it is just his brain trying to protect him. The neural pathways will be entrenched and strong, so he must work hard to create new ones (sometimes called "brain training"). He also needs to calm his nervous system down so that his survival brain realises there is no threat. And most important of all: NEVER GIVE UP HOPE!
Mrs V - Thank you for the explanation. I will show him your experience. I agree with the neurological aspect that the nervous system becomes overprotective. The thing is, he does not have any past or present emotional traumas. It developed after the stressful events of studying too much during university and some family financial stress at that time. But all that is gone. And his illness has been here for more than ten years after.
So for him, it is a complete waste of time for any psychological work; he has tried multiple times and even tried antidepressants. Nothing helps. So we don't understand how to come out of this cycle.
When you don't have any particular trauma to work on, and you don't understand cognitively why this is happening. He isn't even afraid of it because he has done multiple tests, and everything is fine. He doesn't know how to help himself, practically what to do.
Mrs K - Hi V, Trauma doesn't need to be one big, terrible event - there is also "small 't' trauma" (if you know what I mean).
You say your husband doesn't have any present traumas - but he does because he has a chronic illness. This is certainly enough to cause trauma!
Studying too much at university was also a trauma; you must ask yourself why he felt driven to do this. The pressure of family expectations can create trauma; demands, expectations and unmet needs in childhood can create trauma. All of this is "small 't' trauma", but he has trauma because his brain has responded to it and is trying to protect him with CFS!
It is in his subconscious, not his conscious mind. Family financial stress could also be trauma. I know it is an extensive definition of trauma - but trauma can be described as any feeling of threat that overwhelms you, impacting your survival system so that it remembers it and wants to avoid it in the future.
"Complex" is over a more extended period. I had complex PTSD (CPTSD). Your husband's traumas sound "complex". You say, "All that is gone", but our bodies register these things to help us if similar things happen again. The central trauma for your husband is now that he has been ill with CFS for ten years (poor man - my sympathies are total with him and you. I know what that is like.)
Psychologists will help you look at your past (your childhood, the impact of your family on you, different events like over-studying and financial stresses), BUT psychologists do not go through these events explaining to you that they can make your survival brain afraid and therefore that your brain can create symptoms to divert you or protect you.
The knowledge that FEAR of these things can make your brain do this is all important.
Psychologists do not help you to remove the fear.
Also, the stresses of his earlier life hyper-sensitised the danger signals and pathways in his brain. He became "wired for pain", and then he developed CFS. He has had CFS for long enough that the neural pathways are strong. Brains love following the same patterns. He keeps going down the same route. It is HARD to stop this! But possible.
In the podcast, Dr Schubiner discusses the six "F"s perpetuating the symptoms. Fearing the pain/symptoms; Focusing on the pain/symptoms; getting Frustrated by the p/s; Fighting the pain/symptoms; trying to Figure it out and Fix it. All of these things perpetuate the situation or even make it worse.
Do you recognise your husband doing any of these?
So what to do?
Realise that there IS trauma in your husband's life, past and present. Truly understand that the fear that this leaves means that his brain is creating symptoms to protect him (read "Mindbody Prescription" again). Instead, say, "Thank you, brain, but I don't need this anymore. I am safe. I see you are trying to protect me, but there is nothing to protect me from. I am safe."
Keep working on calming the nervous system down (meditation, gratitude, simple living). "Neurons that fire together wire together" - calming himself, being in a relaxed state and reassuring himself that there is nothing to fear, that the symptoms are just a protective mechanism, will begin to retrain his brain, i.e. build new neural pathways and stop reinforcing the old "pain" pathways.
I suggest looking into one of the many brain retraining programmes (off the top of my head: ANS rewire; DNRS, Gupta). He needs to believe that he can be well and IS well. Spend time visualising himself fully fit and living his life. Oh, and finally, with me, I had to ask myself in what ways I was benefiting from being ill because, bizarrely, there will be some (for me, it was avoiding a competitive world and responsibilities plus getting sympathy & attention). So there is a lot of work to do!
All the best, K.
P.S. Your health troubles will not have helped your husband feel in a "safe" place either. With his CFS, he no doubt relies very greatly on your support, and to have you unwell for over ten years (possibly still?) would have made him feel "in danger" at a fundamental level. Plus, it is always awful to see someone you love suffering, and I'm sure he felt angered about how you were treated, on top of his illness not being appropriately treated.
Let me know how you and he get on. With me, I suddenly felt a switch change (they say "the penny drops"), but I have heard of more people recovering gradually from ME/CFS. All this information might well set him on the path to wellness if he can fully take it on board, believe it and put it into practice. Sending you both love and healing strength. K xx
Mrs V - Thank you for all the information, support, and good wishes. I wish you also a complete recovery ❤️🙏
Mrs K - 🙏💚🌈🌱
Mrs V - I completely understand what you are saying. And I agree that conditions like this, and many others, come from an overprotective autonomic nervous system. But I need to emphasise more how important it is to start looking at those as neurological disorders, not psychological ones. Understanding that trauma to the nervous system doesn't need to be psychological. Everything that activates your sympathetic nervous system is "trauma" for the nervous system, for example, viral infections, surgery, hard studying, lack of physical activity etc.
So it is wrong to call this kind of condition a psycho-physiological disorder. That is very dangerous because medicine treats all psycho disorders with antidepressants and psychotherapy - which are NOT nor will ever be the cure or treatment for these conditions and can severely harm the patients whose nervous systems will probably react adversely.
Additionally, if you end up in the hands of those psycho experts, you are done; you will never get better because you will lose years of life, drugged. My uncle lives in Switzerland and got a burned-out diagnosis: chronic fatigue. They gave him a major depression diagnosis; although he isn't depressed but fatigued, he has all classic CFS symptoms.
They told him how his subconscious depression was causing those physical symptoms (because they couldn't find anything physically wrong). Over the last 15, 20 years since he has been struggling, they gave him every possible psychiatric medication for depression, but nothing cured him. He is now on multiple psych medications, and they suggest ELECTROSHOCK therapy.
This is the reality that is happening not just here in Germany/Swiss. But everywhere in medicine. They destroyed his life. Trust me. Doctors will not go and read some Sarno book. It is an official scientific approach. If you have anything psycho, you are a psychiatric patient, and dangerous useless psychiatric medications will be your only option in official medicine.
So having seen many lives destroyed with this kind of mistreatment, I get distraught when someone like this person in the video continues with this dangerous psycho narrative.
Mrs K - I completely understand why you are upset, V. I agree with what you say here. It is HOW one deals with the overprotective ANS that is important. To insist it is psychological and to treat it as such is DISASTROUS - as your uncle's case shows.
Dr Schubiner is at pains to point out that we must check for "structural" reasons for our symptoms first, but if nothing shows up, try the mind-body approach - which is NOT psychological even though it is our brain reacting.
Our brain controls EVERYTHING, but it is not "psychological" when the brain creates physical symptoms to protect us.
In the UK, standard medicine is not good at treating ME/CFS, but it sounds much worse in Germany & Switzerland. Having suffered for so long with this debilitating, life-changing, misunderstood illness, I also find it very upsetting to know about people being mistreated.
Mrs V - Yes, exactly like that. Thank you
Mrs K - Thank you for this conversation, V. I feel connected to you. I do so hope that you and your husband find health and happiness. Xx 🌈 💚 xx
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