(This is Pt. II in a series of blogs that explore Donna Jackson Nakazawa’s story of her search for health and wellness in “The Last Best Cure”. Check out Pt. I here.)
“What you really need to translate for people for whom Western medicine has done all it can – is this: all the science is pointing to the fact that your brain is your last best cure” Dr. Anastasia Rowland-Seymour
Western medicine was keeping Donna alive, but fatigued, in pain and unhappy she turned elsewhere.
Without Western medicine Donna Jackson Nakazawa would surely be dead. She’d been paralyzed twice by Guillain-Barré Syndrome, drugs were (mostly) keeping her immune system from ravaging her body, and a pacemaker was keeping her heart ticking.
Drugs were keeping her thyroid functioning. She was a living-breathing example of the power of Western medicine, but she was also a living-breathing demonstration of its limitations. She was highly fatigued, in pain, worried, and unhappy –she was alive but that was it. It was a pretty joyless existence.
After drugs had failed to return her to anything resembling good health, Western medicine had had little left to give. There were still some options, though. Some people turn to religion for solace. Others drown their sorrows in drugs. Donna turned back to an emerging field in Western medicine called integrative medicine that uses mind/body techniques to enhance health and found a doctor at perhaps the least likely place — Johns Hopkins University.
Dr. Anastasia Rowland-Seymour is the doctor to whom other doctors at Johns Hopkins sent their difficult patients. In fact, after Johns Hopkins found her work so valuable, all second year residents were doing outpatient rotations with her. Now she was seeing Donna.
An Unexpected Question
Donna thought she’d heard everything in her ten years trudging the halls of hospitals looking for answers, but she’d never heard this question: “I’m just wondering… did anything happen in your childhood that could have contributed to all this?”
That threw her for a loop, but it turned out that something had happened: a medical mistake, ironically, had caused Donna’s father – who’d had bleeding problems and autoimmune issues – to die after a relatively minor operation when Donna was twelve. The surgeon had failed to completely read her father’s chart and put in the wrong type of stitches. The stitches had dissolved in reaction to the steroids her father was on. He bled to death in a hospital filled with blood. There was nothing anyone could do.
Did Donna’s fathers death when she was twelve set her up for autoimmune problems decades later?
It was completely unexpected. Not only did Donna lose her father, but she lost part of her mother as her mother descended into grief. Donna was twelve years old. Still, she was now proud of how resilient she’d been. She’d survived and gone on to build a family and a good career. She had gotten over it. She was a survivor. She was fine. How could something, she wondered, that had happened decades ago affect her today?
Dr. Rowland-Seymour suggested, however, that that period of trauma – early in her life as her mind and body were still developing – must have left its mark. Her stress response and immune system, she proposed, had become edgy and reactive. It did take years for that edginess to show up as a disorder, but when it did, it showed up as the very picture of immune over-reaction – an autoimmune disorder.
“It would be hard to imagine that your own childhood stress hasn’t played a significant role in your immune dysfunction and syndromes. Your brain became wired early to become stress reactive. Your immune system paid the price. It’s paying it still.“ Dr. Rowland-Seymour
Dozens of studies now show that what happens to you as a child – whether it’s an infection, a broken bone or a bad diet – can affect your health as an adult. The real twist came, though, when a 17,000 person study at Kaiser-Permanente revealed that stressful events can have just as much an impact as anything physical that can happen to you.
The study found that people experiencing any of the following conditions before turning eighteen
- emotional or physical neglect
- recurrent physical abuse
- recurrent emotional abuse
- contact sexual abuse
or who had lived with someone who
- was mentally ill
- abused alcohol or drugs
- had been incarcerated
- had a mother who was treated violently
- had only lived with one biological parent
carried an increased risk of several disorders. Later studies revealed that other significant stresses such as losing a parent had similar effects.
Before we move on, let’s look at a pretty traumatic event in ME/CFS history – the publication of the CDC’s CFS childhood trauma studies.
Interlude – the CDC ME/CFS 2006 and 2009 Child Trauma Studies
Done under the leadership of Dr. Christine Heims, an Emory psychologist, the results of the two CDC CFS childhood trauma studies were upsetting to many. They suggested childhood trauma was a risk factor for ME/CFS, linked ME/CFS to anxiety and depression, and appeared to implicate the parents in their child’s illness. Given the lack of treatments and the sputtering research into ME/CFS, it was not surprising that the two studies sparked a furious outcry in the patient community.
Before we look at the results note that the study was done using random sampling -which plucks out a different type of ‘CFS’ patient than seen in doctor’s offices – and that the people in the study were classified with ME/CFS using the Empirical definition.
The authors psychological interpretation of the study results ignored the inflammatory findings.
A recent look also reveals the findings were not as robust as first thought. The ME/CFS group, in fact, did not exhibit high or even moderate rates of emotional abuse, physical abuse, or neglect. According to the CDC’s own criteria, “We used the moderate to severe cutoff scores for each subscale to classify subjects as positive for a history of childhood trauma in that category.” the CFS patients as a group would be not classified as having a positive history of childhood trauma in any category except for the sexual abuse one in which they would be classified as having a ‘moderate history’ of sexual abuse.
Compare the cutoff points for a ‘positive’ result and the CFS findings: emotional abuse >13 (ME/CFS = 10.6), physical abuse >10 (ME/CFS = 9.0), emotional neglect -15.0 (ME/CFS =10), physical neglect = 10 (ME/CFS = 7.9). Only with regard to sexual abuse did the ME/CFS group barely make the criteria: sexual abuse > 8 (ME/CFS = 8.6).
Instead as a group, the random-sampled ME/CFS group simply had significantly higher scores in the categories than the healthy controls did.
The percentage of ME/CFS patients with a history of moderate or above abuse or neglect never rose above 35%. (Emotional abuse – 35%, physical abuse – 35%, sexual abuse – 35%, emotional neglect – 27%, physical neglect – 29%). However, about 2/3rds of the group were positive in at least one of the above categories while about a third of the healthy controls were.
Other research not cited by the authors would have provided a more palatable interpretation for many. Evidence suggesting adverse childhood events/experiences (ACEs) can trigger a chronic inflammatory response suggests the study could have been interpreted as placing ME/CFS among a broad range of inflammatory disorders. Later ME/CFS research highlighting an inflammatory and perhaps autoimmune component puts the study findings in a different perspective as well, but the authors focused solely on a psychological interpretation. They stated
“Our results further substantiate the idea that CFS is part of a spectrum of disorders that are associated with childhood adversity, including depression, anxiety, and other functional somatic disorders.”
They ignored the pre-2009 literature indicating that ACEs are also associated with cardiovascular disease, chronic obstructive pulmonary disease (COPD), ischemic heart disease, inflammation, and liver disease. The month after the publication of the CDC’s study would see the publication of a groundbreaking 16,000 person study linking autoimmune disorders to ACEs, and the CDC would later document the increased inflammation found in ME/CFS.
This pattern prevailed as the authors stated that an “enhanced stress reactivity may be a central feature of somatoform disorders”. In fact enhanced stress reactivity and associated inflammation may underpin most ACE-associated disorders. This pattern of a psychiatric interpretation pushing aside potential biological interpretations has been repeatedly seen in ME/CFS, in particular in the last years of Dr. Reeves time at the CDC.
However this study was interpreted, the facts regarding childhood adversity are clear; very stressful events in childhood increase the risk of getting an inflammatory disorder in life. If you think these types of events only happen in bad neighborhoods – think again; they’re found everywhere and they’re common.
Back to the Book
Whatever the extent of childhood trauma in ME/CFS, don’t think the people in the big ACE study weren’t the people you and I grew up with. They were solidly middle or upper class, well-educated people with stable jobs who had to all appearances ‘made it’ – as had Donna before she became ill.
The Myth of the Secure Middle Class
I grew up in a middle class neighborhood in a beach city in Southern California. Violence was rare. The schools were good. The climate was great! It was a pretty idyllic situation in a lot of ways, but there were definitely tears in the fabric. A boy up the street who went to a Catholic school came down with a mental illness. A friend’s sister had a long term case of anorexia nervosa. My friend’s mother was divorced. The star athlete in our school who lived next door turned to crime was later killed. My best friend during high school became a paranoid schizophrenic and never recovered.
Adverse childhood events are not uncommon even in the middle class
My mother and my brother-in-law’s mother both died relatively young of an autoimmune illness. One of the camps we went to as children had a counselor who either was a sexual abuser or was very close to being one.
If you scratch the surface a bit it’s amazing how many major stressors were scattered around this nice little community. It turned out that was a pretty normal situation. The Kaiser study gave everyone who’d experienced some sort of childhood adversity an “ACE score” (adverse childhood events) of 1 for every event. What they found out in 1998 stunned them.
It turned out that adverse childhood events were much more common and much more impactful than they’d suspected. Two-thirds of the study participants had experienced at least one category of childhood adversity before turning eighteen, and one in six had a score of 4 or higher.
Later studies have shown that every one point increase in her ACE score increases a woman’s chance of getting an autoimmune disorder by twenty percent. People with ACE scores above six on average die twenty years earlier than normal. People whose parents divorce are twice as likely to suffer a stroke at some point. Children who experience severe events such as the death of a parent, are abused, or witness severe marital problems are more likely to develop cardiovascular disease, cancer, diabetes, and autoimmune disorders. (Note the strong inflammatory component in many these disorders.)
The CDC study found that adverse childhood events increased your chances of getting ME/CFS six-fold. The study didn’t lead to a new treatment or tell us much about what causes ME/CFS (except possibly to highlight an inflammatory component) but it did in retrospect put ME/CFS squarely in a wide group of inflammatory disorders which studies show can be influenced by childhood events.
Remember that we’re talking about statistical tendencies across large groups of people – not determinative factors. Having a high ACE score doesn’t mean you will get a cardiovascular disease; it means you have an increased risk of getting one. Nor does having a low ACE score mean you’re going to stay healthy. (My ACE score is zero.) Even the lower ACE scores in the ME/CFS group increased their risk of getting ME/CFS significantly. That suggested vulnerability existed in the stress response – vulnerability that probably not show up for decades.
The Link
The adverse childhood event stuff is real – dozens of studies have shown that. But what is the physiological link between an adverse childhood event and a full-blown autoimmune disease thirty years later? It’s not completely clear, but the stress response and its partner, the immune response, clearly plays a major role.
Stressful events during childhood appear to be able to rewire the neural immune circuitry leading to an over-active immune response
The idea is stressful events occurring during a time when your neuro endocrine immune systems were still developing sparked neural pathways and hormonal and inflammatory cascades that have been working on your cells for decades. If your ACE score is one or above, you may have gotten hit twice by that infection that triggered your ME/CFS; there was the infection, and there was your brain’s overwrought response to the infection.
If it’s true that your neuro-immune circuitry got unknowingly rewired when you were young, vulnerable, and still developing, one way to get out of the trap is to go back in and rewire that circuit. That’s what Donna tried to do and that’s what this book is about.
The way out is to go in and rewire the brain/body connection, reduce the stress response, and calm down the immune system, thus giving the body a chance to heal itself.
The “Science of Joy”
Over the next year Donna will attempt to halt or at least reduce the immune cascade that’s been wreaking havoc on her cells for decades
Donna’s goal was to reduce anything that might trigger her brain to send out inflammatory factors that wreaked havoc on her cells. She’d already done the physical stuff; her diet was healthful and she had tried many alternative therapies. (Her earlier book focused on the toxins and other environmental elements that were possibly contributing to the rise in autoimmunity.) Now she would focus on reducing the stress triggers – the fear, the worry, the suffering – that were inflaming, so to speak, her brain. Her goal would now be to increase the feelings of joy and well-being that studies had shown could reduce inflammation.
Her doctor questions how much better anyone can expect to get when pain, fatigue and other symptoms ‘cloud’ everything.
Over the next year Donna is going to engage in three approaches designed to turn her mindset from fatigue, frustration, worry, and pain towards contentment and joy and see what happens to her physiology, her mood, her symptoms, and how functional she is.
The three approaches she’ll take are meditation, yoga, and acupuncture. She’ll keep taking her current supplements and follow her current diet (gluten, dairy, and additive free diet emphasizing vegetables and fruits.)
- Check out The Last Best Cure Blog Series
____________________________
Donna Jackson Nakazawa is an science journalist, author and public speaker. She tweets often about breaking medical news. Follow her tweets and check out her Facebook site and website and blog.
She is the author of the The Last Best Cure, The Autoimmune Epidemic, Does Anybody Else Look Like Me? A Parent’s Guide to Raising Multiracial Children
as well as a contributor to the Andrew Weil Integrative Medicine Library book, Integrative Gastroenterology, (Oxford University Press, April 2010).
Among others she is the recipient of the 2010 National Health Information Award, the 2012 international AESKU Award from the International Congress on Autoimmunity for her lifetime contribution to autoimmune disease research with the book The Autoimmune Epidemic.
I often wonder if these same “scientists”, and I use the term very loosely when dealing with the psychiatric profession, used these same parameters in Nigeria or Ethiopia what percentage of diseases they would predict? Just the term “stress” is opening a huge sociological and anthropological can of worms. Take a look at the mess they’ve made of Autism by breaking it into infinite classes!
It’s just another way to blame the victim!
Greg
I agree that it does open a big can of worms. And it definitely doesn’t apply to everybody. My ACE score is ZERO. I don’t have a history of childhood trauma so something else applies in my case.
I had two reasons for this blog (A) I said I was going to do the book – and this is in the book and (B) on further reflection I realized that this must apply to some people and it could be helpful in that way.
I don’t get really get the ‘blame the victim’ stuff in Donna’s case. She handled her father’s death and her mothers subsequent remoteness very well. She went on to be successful in her field. She thought of herself as a tough, resilient and she was. She was not depressed when she got ill. She was not sitting at home moping – she was an active, successful woman. (She was swimming 60 laps.) You can’t blame her approach for anything. Over time her body if this theory is right, her body – under this kind of grinding immune activity – and surely other factors, simply finally fell apart.
This chapter is not crucial to the rest of the book, by the way. I think of it as an interesting aside. It will apply to some people and not to others.
I guess my reasoning is two fold- first I always find it hard to believe that just one variable can be the cause, have they evaluated other socioeconomic factors as well as the “childhood” trauma? Second, no matter how she “appeared” to be successful and to have dealt with her trauma, somehow her body was at fault and allowed ME/CFS to take over. As you’ve said, far to much has been made already of this- are they screaming it from the NIH roof tops about Cancer? Does it cause gall stones, kidney failure, dementia, impotence, retinitis pigmentosa,( I could go on and on). I find simple cause and effect studies to be like Ian Lipkin stated- “if you’re a hammer all nails look like nails.”
Depending on how you design a study you can skew the results just about any way you want.
Greg
I agree. This report concerns me for the same reasons you mentioned.
Excellent. Thank you.
I had heard of this from another source and for me it was a light going on. I did experience profound stress as a child due to a parent’s mental illness. It was unrelenting. I also felt I had come out a survivor. Now I think it beat me after all. To me the science makes sense.
I DON’T REALLY HAVE THOSE SRESSORS AS STATED. I HAD MANY TRAUMAS; A SERIOUS ILLNESS WHEN 5, 2 BROTHERS DIED AT 4 YRS OLD, A SICK MOM, AN ALCOHOLIC FATHER, A VERY STRESSFUL 20 YR MARRIAGE TO A VIET, VET, FINANCIAL PROBLEMS–TREMENDOUS STRESS! EVEN CFS IS A HUGE STRESSOR. AND HOW DOES ONE FIND THE ENERGY TO DO ALL THE RIGHT THINGS WHEN SO EASILY FATIGUED IT TAKES ALL MY ENERGY TO GO MAKE A SANDWICH, LET ALONE SHOP?? IT GETS HARDER EVERY YEAR!!
BTW, I NEVER RECEIVE THE NEW COMMENTS IF POSTED.
I am prepared to be interested, but also wary. I had a good accummulation of ACE events when young, and though I had many difficulties managed to stay very healthy and very active until just past 70, when first heart valve and then, a few years later, ME hit. I recovered from the surgery pretty well, but have not recovered from ME, alas. Can the effects of these ACE events lurk in waiting for that long a time? I don’t think it answers to my case–which of course does not rule it out for many others as being at least a factor in their vulnerability.
I really don’t know. You did very well for a long time and, of course, these are risk factors – they increase the risk of illness but not everybody and, I imagine, although, I don’t know, that most people with them do not succumb to illness (????) – but the fact that a higher percentage do is meaningfull. Mady Hornig is all about the triad which is I think- your genetics, your history and the environmental insult that pushes you over. I imagine in most people you’ve got to have a variety of things go wrong and childhood trauma can be one of them…
I don’t understand why so many of us that are sick with this Bizarre Malady,
keep denying we have been under extreme stress in our childhood or from way back in our lifetime. Alcoholic Mother . Constant Parent conflict with each other.
This doesn’t mean we don’t have a physical component causing our illness.
I know I had severe emotional stress in childhood. Then after many stressers from a bad marriage to loss of twins at 7 mo, many miscarriges and then a successful pregnancy where the child had severe ADD
HD and then diag with Autism. I sought therapy many time to deal with this child and one day I remember when I first started noticing symptoms of Mono-the therapist saying
“This BOY is killing you” He was not a child then but 16 years old- I was constantly trying to fix or save him. After this I became even sicker-but then for 10 years felt really Healed.
Now I know when I get into stress -afterward I am going to be very sick.
I am not denying it- it can kill you. I am strong but also weak.
FOR SOME REASON I AM ALWAYS FOR THE UNDERDOG-NEED TO RESCUE.
Through it all i graduated college and went to graduate school -paid for it on my own and had a great profession.
Just my thoughts-it all goes together.
Carole
I am just now reading the book and she mentioned mothers caring for Autistic children.
Gregory and Sian;
I am wondering if you either you think that psychological and social factors can play a role in improving health.
What do you make of studies that show women with terminal breast cancer who participate in a support group live twice as long as those not in a support group (in both cases a number of months – but twice as long). And if we/humans can have improved health outcomes by having social contact, by the nature of our contacts, then why cant we have problems with our health related to a lack of various kinds of social support?
At the most extreme, we know that babies who are not picked up and do not get physical contact fail to thrive. It seems fundamental to me that we are social beings, that the way in which we live is as integral to well being and health as nutrition and sleep and meaningful work and health care and so on.
That study you speak of with the women in cancer support group has found to be false. There are many “studies” out there that are not valid or performed scientifically and can not be reproduced. The real finding is that the women coped better with their cancer but their survival rates were not effected at all.
I just attended a lecture which sited that specific study and the effects.
When I see articles like this and see patients buying into it, I can see why physicians think that people with ME are just crazy.
I’m all for therapy and support and making your life better in every way but I do think it is dangerous to link illness to magical thinking.
Very interesting and controversial post, Cort! I’ll just throw in that I have also seen some literature that suggests early life stressors can effect the gut microbiome. The immune alterations then make perfect sense.
I agree that adverse childhood events can predispose you to illness later in life. However, once the awful genie is out of the bottle, it’s not as simple as calming down the body. These are concrete, physiological disease processes going on.
There’s no doubt about that. Look at Donna! We’re going to go over here lab results in the next blog….they’re not pretty!
I am just now reading the book, I was shocked to see the concrete physical illnesses she was dealing with. Along with fevers of unknown origin, like myself. I am a third into the book and am hooked… I was a naysayer prior, thinking this is more of that psychosomatic, it’s all in your head crap.
Glad you’re reading the book :). It’s incredible how sick she is. That’s what gives her history credence for me – she has a lot of documented physical issues. She also doesn’t have many other places to turn (which sounds pretty familiar)
There’s no doubt about that. Look at Donna! We’re going to go over here lab results in the next blog….they’re not pretty!
Plus I booked my first Acupuncture treatment. What do I have to lose? I’ve spent $bazillions on meds and supplements that haven’t helped. This is worth a shot. Even if I don’t get healed trying to calm my sympathetic nervous system, it sure will feel great to feel calmer in the midst of whatever life throws at me.
Thank you, Cort, for bringing Donna’s excellent writing to my attention. I’m partway through “The Autoimmune Epidemic” which is fascinating, especially since I developed at least one definitive autoimmune illness long after my ME/FM/MCS diagnosis.
Years ago, I was informed by a “yoga guru” (actually, a medical doctor visiting from India) that CFS does not exist in his country. He attributed my illness to three things: an affluent lifestyle (we owned two vehicles), being born weak (in a month with reduced daily sunlight), and sexual abuse as a child. I grew up in a loving home. Nevertheless, I did consider the issue of adverse childhood events with respect to later-life illness, and here’s one thing I wondered . . .
No doubt, those living with unexplained chronic illnesses more frequently ask themselves “Why me?” than those who are healthy. How can researchers compensate for this increased “navel gazing”? I completed Donna’s ACE Score questionnaire and achieved a “3”, but only by giving the broadest possible interpretation to the questions. Had I still been enjoying my active and accomplished pre-illness life, chances are my answers would have scored a “0”.
However, I have wondered how many ME/CFS patients were born prematurely — in my case, 6 weeks early due to a bad fall my mother had while pregnant.
I also wonder about the effect of conditions in the womb. My mom was going through horrific stress during her pregnancy with me. Thus, I was coated in cortisol. I bet that had an adverse effect as well.
Who knows? I was a premie. At some point a combination of factors came together for all of us; whether it was a combination of genetics, something with fetal development, just the right virus at the wrong time – and something major changed… Maybe for you it started in the womb – and then got accentuated later on by something else.
That’s an interesting question. Me and my twin were borne prematurely and I imagine we were c-section babies as well which means we missed out some good microflora. My brother is fine – I apparently ran into something that he didn’t but I wouldn’t be surprised if being premies, the c-section and our genetics (Mother had Sjogren’s) set me up for a fall….
This is getting interesting! Between this and the limbic kindling article, I’ve found this week’s topics to be quite exciting. When mixed in with the posts of all the work being done to find physical causes/treatments for CFS, I appreciate Cort’s broad reporting that includes perspectives on both body and mind. Thank you Cort and all the guest bloggers! I’ve yearned so long time for validation that this isn’t all in my head, but I finally reached a point where I couldn’t deny that there might be at least be some psychological components to my condition. I started believing that, yes, there is something radically wrong with my bodily systems, but perhaps some of my mental habits and hyper-response to stress were getting in the way of my body’s ability to balance and heal itself.
Last year at my lowest I decided I couldn’t wait for causes to be found and treatments to cure me, so I started Gupta’s amygdala retraining. I figured it was a very low cost/low risk thing to try for relief, and perhaps a more productive way to spend my down time than feeling sorry for myself.
My healing has been phenomenal! I’ve experienced healing on all levels – physical, mental and emotional. The best part is, though I can still have a low day here and there (I rarely CRASH anymore), I’m having more and more days that feel better than my best days…EVER in my life. It’s a completely new level of well being with clarity of mind beyond what I ever remember.
I’m not fully recovered yet; I still can’t tolerate much exercise without paying for it, though the fee has dropped significantly. But I really do feel like I got a new lease on life. For me the mind-body connection is undeniable.
That’s really something – congratulations! Please keep in touch with your progress.
Can you please tell us what you did exactly? I looked up the doctor, and he wants to sell his products.
I am so weary of spending money on things that were “supposed” to make me well.
There are far too many people trying to profit off of the misery of others in ill health; desperate for a solution.
Ashok Gupta had CFS/ME when at Cambridge University in the UK.He recovered using his techniques.
His course is very well described on hhis web site and you have lots of video opportunities to see what he bases his money back guarantee on..The core seems to be NLP which reduces or removes a lot of negative thoughts stress, which gives the body a chance to heal. I found the Stopping technique to work almost immediately and very much appreciate the removal of negative, perfectionist thinking from my life.
We all are on differing journeys with this syndrome and will have differing things which can help us feel better and improve. My journey happened to have both a physiological and psychological element to it.
I’m not recovered but improved enough have a life that I enjoy and feel is productive.
Cort has taken some, if not all ,of the Amygdala Retraining course as well. I hope he will comment here.
I found the AR helpful but ultimately dropped it but have kept up on similar approaches which, while very slow have definitely been helpful for quality of life, feelings of well-being and even health. Still very exercise challenged by glad to feel better.
i can’t imagine anyone going through childhood without ace. No control of even the most basic things, eating and sleeping. I always needed more rest than other kidss and often fell asleep in kindergarten during nap times, and I was hard to wake up. Always easily tired, living with an emotionally violent father, I remember early guilt feelings for things I did not do but was accused of doing. (Like using his comb). We were sat down in a row for what seemed like ages, while we were questioned about the crime. (Turns out it was a visiting cousin).
Cort, I wanted to tell you that I won the appeal at Humana and they are agreed to pay for my Xyrem until 12/31/`14. No one knows the future, but I am very relieved for the present. Thank you for allowing me to comment, Abby
Congratulations on getting the Xyrem approved – I’m not surprised it wasn’t easy.
Now that you mention it, according to the Landmark programs I’ve done, every human being confronts situations early in life in which they feel their ‘survival’ is threatened and we make decisions at that point – how we’re going to be or not be- which sticks with us from then. Like is full of stress 🙂
You were obviously in a particularly difficult and edgy situation as well.
ACE score = 0. But what about events outside the home? I was one of those endlessly teased for being too smart and had few to no friends until college. However, I tend to believe that the reason I was vulnerable to prolonged illness was that at the time I became ill, that is, was unable to fight off the infection, (now in retrospect after obvious tick bites with rash), was that I had dieted down to a below healthy weight on the diet of the 90’s (extreme low fat) because I was playing at being a ballet dancer. And I was going to school 12 hours a day at the local community college to prepare for medical school (I took both years of chemistry at the same time) and finished my premed courses in 2 years.
There is a researcher at the University of Toronto who has done significant research in the area of ACE’s and health effects later in life (peptic ulcers, cancer, heart disease, and so forth) and has found positive risk factors for every single one. I don’t dispute a mind body connection, nor do I dispute the possibility that ACE’s can create a greater risk for adverse health events later in life, but I do have a dispute with how that information is used.
This particular researcher, Esme Fuller-Thomson, found a relationship between childhood sexual abuse and risk of heart attack later in life in men – a three fold increase. Now “risk of heart attack” is a hard stat to find but approximately 4 out of 100 men in Canada have heart disease and by age 73 this number rises to 23 out of 100. A 300% increase is a significant number.
Ms.Fuller-Thompson also found a relationship between childhood sexual abuse and fibromyalgia. Stats of FM in Canada are 2.5 pr 100 (officially) and the risk was increased by 65% due to sexual abuse; an increased prevalence of 4.12 per hundred for women who were abused. NOT such a significant number.
Now….I can guarantee you that physicians in Canada have been advised to screen FM patients for early childhood abuse in the process of diagnosing and treating patients and I have personally been asked this question. And this is not used as an early screening tool (I had FM for 30 years) but as a gentle prod to find the PSYCHOLOGICAL reason behind the patients pain, and have them seek counselling as treatment.
I cannot say for sure, but I HIGHLY DOUBT that any doctors in Canada are screening their male patients for a history of sexual abuse to screen for future risk of heart attack, despite the significantly higher risk (300%) and I would state categorically that no men are getting referred to a psychologist to manage their heart disease.
My other beef….this research was based on the Canadian Community Health Survey which is self reported data. I have completed this survey and have never indicated that I have CFS or Fibromyalgia because I am part of the generation diagnosed in the 80’s who learned very quickly that self-identifying was not typically a smart move. The circle of people aware of my health status is extremely small. I probably would not report childhood sexual abuse on this survey either as I have learned to be very private about my health. It is not a huge leap to think that those women who were comfortable to disclose childhood sexual abuse, would also not hesitate to report FM. My sense is this data is not reliable and with such a small increase in risk (2.5 – 4.12 per 100) should hardly be the foundation upon which TREATMENT should be based…and yet…..
http://www.socialwork.utoronto.ca/faculty/bios/fuller-thomson.htm
I was in the ER with sepsis and the ER Dr asked me “were you abused as a child?”… while my teeth were chattering, fingers and toes were blue, etc, etc. It has gotten to be ridiculous and dangerous the way the medical profession tries to make everything psychosomatic.
It is true that emotional trauma is medically relevant. It is an entirely physical phenomenon; albeit one we only have a very basic understanding of currently. The major issue is that we are no where even close to being able to documenting the subtle neuro-chemical physics involved in these events. It maybe even hundreds of years before we are able to model these interactions with any accuracy.
I can’t help but wonder if it wouldn’t make a lot more sense to track childhood illness (scientifically verifiable trauma) instead of childhood emotional trauma (survey data). Wouldn’t looking for and gathering information on type, severity, and frequency of various ailments (colds, viruses, fevers, allergies, infections, ect.) throughout childhood give more relevant data pertaining to immune system modulations?
With that type of information there is an actual chance of going from correlation to causation by means of scientific testing, whereas with survey data you’re doing the equivalence of social science. We need to stand strong for pragmatic hard science research, not soft social science that has almost no potential what-so-ever in bring meaningful change. Survey data is interesting no doubt, but that is how you get the FDA to approve a drug, not how you develop a drug to cure a disease.
Thanks for another superb article and for looking at a full spectrum of possibilities with ME/CFS. I can imagine that the concern for some patients (me included, admittedly) is that certain factions within the medical/scientific community may use any information about childhood trauma as evidence that it’s the sole and whole cause of ME/CFS. We know that genomics and a host of other factors can be part of each person’s unique ‘mix’ of causative elements, and it seems the more doctors and science consider all of the factors unique to each patient’s situation, the better they’ll be able to understand and help treat all of us.
It’s wonderful that this blog looks at such a wide array of possible etiological or contributing elements – just what the best journalism and help for all of us should contain!
btw – Here’s a report of a recent study out of Emory University that used brain imaging of the basal ganglia in ME/CFS patients:
http://psychcentral.com/news/2014/05/24/chronic-fatigue-syndrome-linked-to-changes-in-the-brain/70292.html
Thanks and thanks for the link. That study has been a long time coming.. How about a CDC funded study that suggests immune activation – possibly caused by a virus – is affecting the brain in ME/CFS. Looking forward to seeing the actual study. 🙂
I had an interesting experience recently at a professional development session on chronic pain disorders by a psychologist who had done a post-grad qualification in pain. She mentioned Fibromyalgia and CFS and that ‘we all know’ that people with these disorders have had unstable childhoods. I was quite angry and commented during the session about ‘psychiatrising’ medical disorders. I also emailed her afterwards and mentioned some of the auto-immune sort of articles you mention here Cort. I also told her that she never knows who might be in her audience, even if they are professionals in the mental health field!
Having said that, when you look at the area of the brain that processes any sorts of stressors, whether illness, pain or emotional, it is all the same area, generally, so you can’t completely rule out some kind of interaction between the physical and emotional. I do have a pretty high ACE score and have done a lot to compensate for it, but, as I hit my fifties and on, various physical damage and disorders have kicked in, so that, in my 70th year, I have to pace myself, as I don’t cope well with physical or emotional stress as well as I used to.
But, for me, that is also part of the ageing process; in my last two years before I retired I was struggling to get to work daily and cope with demands of academic life. Things like fog got worse and just driving across town can leave me exhausted for at least a couple of days!
It upsets me too Mike that a professional would say that. My childhood was great. I did just read an article that said suicide is more prevalent the further down you are in birth order ( I know birth order is very controversial) and one reason may be the stress of an older pregnancy, with more cortisol in utero. It would be interesting to do a study re the age of our mothers when giving birth. My mom was 35 and had rubella during the first trimester, which isn’t supposed to matter, but I wonder…..
I read the book discussed here and think I remember that a gene was found that was responsible for some people being able to overcome ACE’s and others not.
I was born a few months before my mother’s 35th birthday. As far as I know, she was healthy during the pregnancy; although my birth was traumatic — 6 weeks early after my Mom’s bad fall on the ice as previously mentioned.
I find these psychologizing studies to be just ridiculous. Don’t you/they understand that correlation is not causation?
I have a zero “ACE” score. My grandparents lived through the Great Depression and WWI and the usual discipline that would be called child abuse today. They didn’t get ME or any other autoimmune disease and all lived past 90.
My parents dealt with WWII and a lot of other stressful events in their lives and didn’t get any kind of autoimmune disease or ME. They are still living independantly, ages 88 & 90.
Plain old logic tells you, that by looking around the world where there is so much abuse of one kind or another and the sufferers never get ME/CFS or any other autoimmune disease, that this is just psychology/psychiatry seeing what they want to see and wanting more money for more pseudo-research.
This article is almost schizophrenic. First you mention the reasons the study can’t be taken seriously, like the fact that the cohort wasn’t a valid one in the first place, then go on to try to twist around and make it seem to have value. If the cohort is wrong the study has no validity from the outset.
Psychiatry just isn’t a real science.
As I tried to point out nobody is saying that if you have an ACE score of X – you will get sick or if you don’t have an ACE score then you’ll be fine. It doesn’t work that way. These are tendencies spread across the population. Even if you have an ACE score of such and such something else surely must be present for you to come down with an autoimmune disease.
Look at Donna.She has her ACE score but she also has a father with autoimmune issues so her genetics surely came into play.
Genetic studies suggest if you have ME/CFS your genes are another potential risk factor (and only a percentage of people with ME/CFS will have the problematic gene polymorphisms).
I image that getting exposed to Epstein-Barr Virus for the first time later in life is probably a HUGE risk factor; it could be the biggest risk factor of all. If the shoe doesn’t fit don’t feel compelled to wear it.
Yes, Iquitos, I completely agree with you. The study mentioned above linking CFS to childhood trauma was also found to be completely unfounded as with the aforementioned cancer study linking support groups to survival rates. I think that CFS/ME patients can’t have it both ways, you can’t cry that doctors don’t take you seriously and then say, well, yes, I am sick because I am “wounded”. If someone claims they recovered from CFS due to therapy, they never had CFS at by any means, they had a form of depression and or depression/anxiety that included fatigue and pain etc.
In 20 years as a patient advocate, I have never seen anyone have a real illness resolved due to therapy, healing past traumas or alternative medicine. I have, however, seen every person I’ve known to have benefited in some capacity in their life times from western medicine.
I had no idea this site endorced junk “science”. It’s such a shame as there has also been some wonderful info shared here. I have tried to remove myself from the mailing list, but keep on getting emails.
Thanks for asking to be removed from the email list – you’ve been removed and I ensure that you stay removed by putting you on a ‘do not subscribe list’. (That way we can both sleep soundly :))
I want to point out that no one – as you propose – is suggesting that therapy is sufficient to deal with these illnesses, and that Donna – the subject of this blog – has twice been paralyzed by Guillain Barre Syndrome – and has been and is being kept alive by Western Medicine.
Donna hasn’t given up the medications that are keeping her alive – nor is she suggesting that anyone else do that. You’re the only one, to my knowledge, that is suggesting that ‘therapy’ is sufficient to cure an autoimmune disorder.
It’s clear that while Donna is alive, she’s not healthy and that she experiences considerable pain, fatigue and the inevitable frustration and emotional difficulties that comes with that. She’s tried everything Western Medicine could provide and has plateaued, so here she is, like so many us, exploring new areas. She’s simply adding another approach to her Western medicine treatments.
That approach she got interested in because the science (she is a medical journalist) was suggesting it might be helpful.
She wants to feel more joy in her life and yes, she hopes that it could have some clinical benefit as well, but neither she nor her Western medicine doctor proposes that her GBS will disappear.
Iquitos and Irene, I agree with you. I want to add, “Doctors and Researchers, Forget the past and hypothetical risk factors from long ago. Pay attention to what is happening in the bodies of those with ME/CFS now and learn how to treat us medically.” That is all there is to it. If you put a couple of raw eggs in a hot frying pan and they cook, does it stand to reason that if you put the cooked eggs in a cold pan, they will turn raw again?
Twenty years so far of my life have been partially lost due to this wasteful psychiatric focus. The only ones gaining are the psychiatrists and the horde of alternative practitioners whose contributions, in my view, come down to flattery. People are flattered by having someone to listen, who act like their past history is a big deal. People like lying down in those comfortable, even luxurious rooms in Spa-like comfort. People like laying down on those padded tables and having a whole hour to talk all about “me”. But those who are cured by such means never had ME/CFS.
Here is a question: Has anyone of you ever encountered a psychiatrist or alternative practitioner who told you that they couldn’t treat ME/CFS? I would be amazed to hear if any one of them said they could not. As far as I know, they all think they can. But have any people with ME/CFS been CURED by these people’s methods? I think not.
I don’t know where this focus on being ‘cured’ comes from but I’m pretty darn sure it didn’t come from my blog. If you can show me where in that blog Donna is protrayed as trying to get cured – then I’ll remove it immediately. If you can’t then please don’t put words in her or my mouth.
She’s talking about getting benefits and you’re talking about a cure; two very different things.
This is not about being cured. It about someone trying to improve the quality of her life and hoping it has some clinical benefit. No one has ever suggested and no studies have ever shown that meditation, yoga or acupuncture any approach of that nature is powerful enough to cure autoimmune or other disorders of that type. Studies do suggest that people can improve their quality of life and neuroendocrine-immune functioning and other aspects.
Does an ACE score point in a treatment direction? It does indirectly as it does posit that a hyper-active stress response is causing inflammation which is hitting the cells hard. So one approach is to try and tamp down that stress response – and that’s what Donna is going to try and do. I would point out that numerous studies suggest the sympathetic nervous system is over-active in ME/CFS – so even if you don’t have a positive ACE score (as I don’t) her story may still be beneficial.
This article is more about trying to cope, trying to stop pain from turning into suffering/misery…And wondering if that could have an effect physically. I read nothing about cure. Love the blog Cort. I love getting the new articles in my email. Keep up the good work!
I apologize, Cort, you aren’t saying “cure”. Dr. Komaroff has said and written that GET and CBT offer benefits to some too. Maybe he goes so far as to call them “treatments”–which can mean anything from something with a slightly proven slight benefit to a cure. Treatment is a very broad term. What happens within this idea can be a slide from the idea of some degree of possible “benefit” to the implication of cure or the direction for a cure. For example in the realm of cancer “treatment”, this can mean anything from a result of permanent remission to a survival rate of a few weeks longer. It could mean in reality serious side effects and no benefits.
Patients expect and ought to be able to expect that most of the attention and research dollars should go towards “cure”. If not “cure”, then “proven effective treatments”. However, in our case, this category of real help was long ago pre-empted by psychiatric rummaging in the past and “treatments” which realistically offered only possible “benefits”.
Anyway, I apologize for reacting negatively when I do know your intentions and those of Donna are to be helpful.
On a second subject, the sympathetic nervous system may be overactive in some of us and underactive in others. I lost most my flight or fight response 15 years ago. There is nothing fast or overactive in my system of any kind. The hypotension I have is very serious–all low–no POTs reaction after the fact, just low. The neurologist calls what I have Pure Autonomic Failure or Pandysautonomia. My immune system also has abnormally low levels–I haven’t heard about anything in it which is elevated at all. My brain is slow to very slow, never speedy at all. So what I am suggesting is that some of us may be living at the opposite end of the spectrum from a stress response.
Subgroups
Thanks Cecilia, I appreciate it :).
I agree that there’s quite a spectrum. For the most part I’ve been on the overactive SNS side but I do lapse into what feels like the underactive or non-responsive side at times – and it’s usually accompanied by immune symptoms. (I much prefer the overactive one!) . We’re a very heterogeneous group and sometimes even we ourselves are heterogenous.
I’m tempermentally inclinded to the approach that Donna’s taken; I would have done that kind of stuff if I hadn’t gotten ill (and much sooner!) but I would above all love to have a ‘cure’ and like you I wish more researchers were looking at cause.
Thanks
more evidence for the brain:
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1405D&L=co-cure&P=R1199
The thing that annoys me about the unscientific discipline that is psychiatry is that whilst they talk about the mind body connection where the mind can precipitate physical symptoms they do not like to speak about it going the other way- that when things go physically wrong, this can precipitate cognitive symptoms of the sort we experience. It’s all one way traffic in the ‘mind -body’ connection. In remember a study done that showed higher cancer rates for people who’d been abused but does anyone treat pancreatic cancer with CBT. No one would say cancer’s caused by abuse in that sense but refer to the disease physiology-abuse/trauma does affect the body as a factor but the IMMEDIATE cause isn’t that- it’s the physiology that has to be dealt with.This is where ME patients get a very bad deal.
If we could alleviate the disease significantly by yoga et we’d all have done it by now.
How true! In fact, I have already been seduced by those alternative healthcare procedures, paid very dearly in money, time, energy and hope, and ended up with no benefit at all, with the exception of meditaton, which I was already doing when I got sick. Maybe I should assume that meditating caused my ME?
Yoga just made me hurt more and acupuncture didn’t do a thing, one way or the other, except cost an outrageous amount in money and energy getting to the appointments.
Ironically, I met a psychiatrist with ME. I was assigned to him when the medical establishment was pushing the CBT treatment fraud on me. He was very simpatico because he was being regarded as a malingerer or hypochondriac himself. At that point in the illness he had hip pain so bad he could hardly walk and had to stop working altogether during my “treatment.” We had a lot of conversations about how useless all these “alternative” “treatments” were. He, too, had tried them all and, like me, just got worse over time.
“If we could alleviate the disease significantly by yoga we’d all have done it by now.”
That simply is not true!
Some people will never resort to so called alternative medicine, no matter what.
I get your point and frustration, but why polarize the discussion; is that helpful to any of us?
I completely agree that ME/CFS is not getting anywhere near the research it should. I do know somebody who has benefited greatly from yoga actually (lol) in combination with other things – and he was about as bad as you get can get in the beginning. I think he was probably fairly unusual but we hear all the time from people who benefit from all sorts of things.
This is the etiology in my opinion and the way out is through rewiring the brain.
Thanks for the fantastic post, Cort.
Edie
Thanks Edie – it’ll be interesting to see how Donna. I’ll trying out her stuff as she goes a long as well.
People who scoff at the studies showing a link between childhood trauma and CFS/ME probably haven’t studied biology much. There are plenty of studies showing that mice are left with permanent damage if separated from their parents at a young age. Well, we’re not mice. But chimps can die of stress if separated from their parents. In one day. We’re remarkably resilient, but that doesn’t mean we always escape childhood trauma unscathed. It doesn’t mean that CFS/ME is psychological or psychosomatic or anything like that.
There are many people with childhood traumas who don’t get sick as a result. There are many with CFS/ME who had no traumas before getting sick. That doesn’t mean there is no connection.
I am completely certain my getting sick at 15/16 had a lot to do with an extremely abusive, alcoholic, violent, mentally ill mother. Heck, at first I thought I had got some kind of a psychosomatic disease. It would have made sense. Of course it wasn’t just trauma and stress that made me sick, there was a virus involved too (and likely my mild EDS-like collagen abnormality). But I probably damaged my HPA axis already in childhood.
Many people (not all) with CFS/ME believe they had severe stress at the time of their getting sick, which contributed. Very few people disagree with this concept, because we all know many people in this situation. Yet say “trauma” instead of “stress” and suddenly people think someone is trying to make the whole thing into a psychological condition!
I have hypopituitarism as a CFS/ME complication. Several times it has very suddenly got permanently worse from acute stress – to the point it won’t get worse any more, as apparently my pituitary is dead now. This is not supposed to happen. You’re not supposed to get permanent organ damage from stress. Medical literature doesn’t recognize this phenomenon. Yet recently I’ve come across some other people who are convinced their hypopituitarism is caused by stress.
Could it be that we also self-cause stress by trying to be too “perfect”? Striving for perfect behaviour, grades, etc can certainly make life very difficult.
I’m just wondering if the aftermath of some childhood traumas may cause a striving to control the child’s environment through doing everything “right”?
Once I understood that my self-loathing as weak and feeble came from having high achieving parents and was self caused, I was able to see the positive work I was doing to control aspects of my illness. Going from mental self-abuse to self-praise has certainly encourged me to work on those aspects of my illness where I can get in my own way through energy wastage..
Cool. I imagine that’s not a very common problem in ME/CFS in general given that people with ME/CFS really can’t produce much anymore. We certainly can’t live up to our own expectations and that’s stressful.