(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
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.
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.
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.
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 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.
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”
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
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.
After years of work it’s time to attempt what we’ve never been able to do before – get Congress to force the NIH to double its funding for ME/CFS. Support the historic bill to increase research funding, add new ME/CFS research centers, require the development of a strategic plan, etc.. It will take less than 5 minutes.