“My goal is to help those suffering from chronic conditions better understand the intersection between our neurobiology, immunology and the deepest inner workings of the human heart — and to use that understanding to embark on a transformation to healing.” —Donna Jackson Nakazawa
Donna Jackson Nakazawa has just published a book “Childhood Disrupted- How Biography Becomes Biology” that illuminates the effects “childhood trauma” can have on health. She knows whereof she writes. Her fathers death during her teenage years probably set her up for a paralyzing attack of an autoimmune disorder called Guillain-Barre Syndrome decades later.
Adversity – in whatever form – during childhood can have long-term consequences.
The effects of childhood trauma on illness later in life are controversial but they shouldn’t be – the science is well-established. Mix together childhood trauma and illness, though, and the results can be explosive. Blame or guilt sometimes gets introduced but this is not about coping – it’s about the sometimes inevitable physiological consequences of being exposed to adverse situations.
Like any predisposing factor none of these events guarantee disaster – they just heighten the possibility it will happen. You don’t need to have a difficult childhood to have a screwed up immune system either. My ACE score is low: I got ME/CFS another way, but some cases of ME/CFS and FM surely got their start in childhood.
It goes something like this: a period of stress – whether from an infection, an emotionally difficult situation or whatever – puts stress chemical production on a hair-trigger – permanently. Nothing obvious happens for many years but subtle homeostatic shifts are continually eroding the resilience of important systems. Ten, twenty, thirty years later some kind of threat – a toxin, a pathogen or some other stressor – breaks the camel’s back and a pathological state takes over. A new normal is established.
The immune system is heavily involved.
A key takeway for ME/CFS and FM patients? It’s likely the immune system at work and that makes sense. The immune system jumps in during any stressful situation and it’s got a photographic memory. However your immune system got upset (childhood adversity, a later infection or both) Donna Jackson Nakazawa’s description of the process that occurs suggests she’s hitting on something that contributes to ME/CFS and FM.
When a child faces chronic and unpredictable stressors their developing body and brain become routinely flooded with inflammatory stress chemicals that alter the expression of genes that control stress hormone output, triggering an overactive inflammatory stress response for life. When these changes occur in genes that should regulate a healthy stress response, a child’s inflammatory stress response becomes reset to “on” for life – and the brakes that should turn that stress response off don’t work. These epigenetic changes predispose an individual to lifelong inflammation and turn on genes associated with developing a range of adult diseases.
As an adult, if we find ourselves overreacting to stressors in our life with a heightened stress response – an argument with our spouse, a bill we weren’t expecting, a car that swerves in front of us on the highway – our inflammatory response stays on high, and this leads to physical disease and neuroinflammation, and mental health disorders. Donna Jackson Nakazawa
Doing Something About It
What can be done about this? Anything that takes the stress response off it’s hair trigger and reduces inflammation can be helpful. For some people it might be diet or immune modulating drugs or mind/body work. A years focus on mind/body techniques enabled Donna to bring her immune test results to normal, reduce her prescription drug needs and reduce her symptoms markedly. She wasn’t back to normal – two bouts of Guillaine-Barre Syndrome probably make that impossible – but her health was stunningly improved. She described her efforts in the The Last Best Cure – a book we’re following on Health Rising.
With Donna’s new book hitting the shelves today let’s take this opportunity to take the Adverse Childhood Experiences (ACE) test. Simply collect your score at the end and tell us where you fit in the poll below. (All answers are anonymous).
The Adverse Childhood Experiences (ACE) Test
While you were growing up, during your first 18 years of life did a parent or other adult in the household often or very often…swear at you, insult you, put you down, or humiliate you? or act in a way that made you afraid that you might be physically hurt?
- If yes enter 1 ________
2. Did a parent or other adult in the household often or very often…push, grab, slap, or throw something at you? or ever hit you so hard that you had marks or were injured?
- If yes enter 1 ________
Did an adult or person at least 5 years older than you ever…touch or fondle you or have you touch their body in a sexual way or attempt or actually have oral, anal, or vaginal intercourse with you?
- If yes enter 1 ________
Did you often or very often feel that …no one in your family loved you or thought you were important or special or your family didn’t look out for each other, feel close to each other, or support each other?
- If yes enter 1 ________
Did you often or very often feel that …you didn’t have enough to eat, had to wear dirty clothes, and had no one to protect you? or your parents were too drunk or high to take care of you or take you to the doctor if you needed it?
- If yes enter 1 ________
Were your parents ever separated or divorced?
- If yes enter 1 _______
Was your mother or stepmother often or very often pushed, grabbed, slapped, or had something thrown at her or sometimes, often, or very often kicked, bitten, hit with a fist, or hit with something hard or ever repeatedly hit at least a few minutes or threatened with a gun or knife?
- If yes enter 1 ________
Did you live with anyone who was a problem drinker or alcoholic or who used street drugs?
- If yes enter 1 ________
Was a household member depressed or mentally ill, or did a household member attempt suicide?
- If yes enter 1 ________
Did a household member go to prison?
- If yes enter 1 _______
Now add up your “Yes” answers: _______ This is your ACE Score
The ACE Poll
The Consequences
It should be noted that even though the risks are increased your chances of coming down with any particular disorder are still very small. These are tendencies that show up in large populations and it took large population studies to uncover them. None of the statistics means a person with a certain ACE score is going to get a disorder.
- ACE Score – 1: Women are 20% more likely to be hospitalized with an autoimmune disorder
- ACE Score – 4: You are two times more likely to get cancer, 4 times more likely to be diagnosed with chronic pulmonary lung disease; two and a half times more likely to get hepatitis, 4 1/2 times more likely to experience depression, and 12 x’s more likely to commit suicide.
- ACE Score – 6: on average your life span is shortened by twenty years.
- ACE Score – 7 – 3 1/2 times more likely to develop heart disease.
______________________________________
Donna Jackson Nakazawa is an award winning journalist who’s recent books have featured her efforts to learn about and recover from autoimmune disorders and other chronic illnesses.
Check out an interview with Donna on her recent book here
In the sentence “(childhood diversity, a later infection or both)” I think you mean “adversity” not “diversity”. Also the question “Was your mother or stepmother often or very often pushed, grabbed…” should be changed to a gender neutral form as domestic violence can be caused by either parent and now days parents may be of the same sex.
The complete ACE survey and info on the CDC study that this appears to be based on are at: http://www.cdc.gov/violenceprevention/acestudy/index.html
Finally, while these kinds of surveys and studies are interesting they are statistical averages and some people from horrible situation never develop problems and some from loving homes develop horrible problems. Like genetics ACE are only one part of a person’s health picture and must be taken in context. Plus while some questions are fairly objective like “Did a household member go to prison” other questions such as “Did you often or very often feel that …no one in your family loved you or thought you were important or special or your family didn’t look out for each other, feel close to each other, or support each other?” are rather subjective and prone to selective memory or coloring by one’s current situation.
Agreed, they are one part of the puzzle. Mady Hornig talked of the three legs I think to many chronic illnesses: genes, timing (i.e. bad timing) and environmental influences (toxins, infections). It does make sense that things that happen when we are developing could have a bigger impact…I imagine studies of serious infections would have similar results.
Cort could not fill out anything on quiz. Would not take type in??
Interesting study.
Carole
Another USELESS survey that is not valid. Of course STRESS is known to be harmful and contributes to all disease. And, there are many people who live extremely stressful lives, drink alcohol, do drugs and have great health and live to old age. Sorry, but this is a WASTE ! There is research on the immune system, stress and illness. I was a counselor working with cancer patients and loved my work teaching stress reduction techniques and leadi g support groups. Of course, it helps but is not a cure, some people recover, others die. There is some underlying infection in alot of us , I have viral and bacterial infections and no cure. Another way for people to make some money….. it’s good for them.
Maybe you read should read the blog again.
It noted that these events increase someone’s risk of getting certain illnesses – not that they will get them. Take autoimmune disorders – an ACE score of 1 increases the risk of a woman being hospitalized for one by twenty percent. But most women never get an autoimmune disorder and many women have ACE scores of one or greater. What to make of this – these are risk factors..they’re not determinative.
Nor does the blog suggest stress reduction is a cure. It suggests just what you said – it helps…
Nobody, by the way, suspected that these events would have such an effect. So it wasn’t an “of course” then and I don’t think it is now. I think the results were pretty surprising.
Wasn’t it mentioned that the responses fell in line with what happens in the general public. In terms of statistics X% of any of the ACE questions would match up with that same statistic for life.
That’s where I sort of part ways with this being new news of any kind. How can you extrapolate some relationship between these events causing outcomes that have anything to do with ME/FMS when they match the general population.
There where a couple of studies which showed a relation but I don’t think they were particularly strong studies or that the findings were that strong. This was more meant to apply to chronic illnesses as a whole than specifically to ME/CFS.
I do not like the ACE scale at all, except for use in certain very specific purposes. There are a ton of things that can be very traumatic during childhood that are not included on this test. Personally, I only score a 1 on it, but went thru multiple instances of sexual abuse AND rapes, skipped a grade (which was emotionally very difficult for a lot of reasons), and had several other childhood experiences that anyone would consider adverse, but that are not included on the ACE scale. And, I can think of quite a few more that I did not experience, but that many children do.
Also, if I had to pick, I’d say that I mostly have ME/CFS, but I really have both, and neither is mild. So, being forced to choose isn’t really accurate.
Childhood bullying and dealing with being LGBT are also missing. These are big gaping holes in this questionnaire for me.
It sounds like you should score a lot higher than 1.
I don’t think one should be forced to choose between diseases either. You can certainly have more than one..
Agree. The score doesn’t cover things like being beaten up and beaten unconscious at schjool, emotional or physical abuse at school, etc.
I wish someone would address childhood trauma a different way. True I suffer from PTSD, but now I have a voice and I speak out. But I can my Grandmother say so many times to my mother that she was going to hurt my young growing body by her constant physical abuse and that was just what she got “caught” doing it was usually constant full drawn back swing slap to my face. Not once, not twice, but to the point SHE had to go to the Emergency Room because she busted her the blood vessels in her wrist from hitting me. It was daily, multiple times, for any little infraction. No alcohol involved, no drugs, we were a “good family, church, money, name”. I caught her smiling once as she beat me and I was saying I was sorry and crying. Two things happened that day at 12 years old, I never told her I was sorry again and I never cowered during the beatings. Which of course infuriated her, but I am not afraid of physical pain, at least on the outside, and as adult I chose to break the cycle as a parent and in my career path. Oh gosh, didn’t mean to go all true confessions BUT often times now as I am disabled and I hear my Doctor say every injury you got as you were young becomes arthritis, are all my beatings now physical injuries echoes. Are they my migraines? My Fibromyalgia? My first three vertebrae displacement? Let’s not go down the laundry list. These questions would not just help me, but thousands in the future.
Deborah, thanks for sharing your traumas. It’s good you can be open and talk about them. And you never know who you may touch and help with your story. I’m touched and can relate. My abuser just died and before she did was DXd with many mental disorders. I was her caregiver and tried to help her find peace in her mind. Before she passed, with her finally medicated – she appreciated me and I had the mom I always wanted. But just too short of a time. Two months was not long enough to have that connection. It did help me understand that our families abuse was due to her illness and she wasn’t just evil. She was in pain and as she said “trapped in her own mind”. She is at peace now – and I’m trying to heal. (My dad died (cancer) two weeks before my mom (dementia and pneumonia). My husband and I were their support and helped with their needed care (I was away from my own home for 1 1/2 years) – I’m so glad I could find the strength to do it.). We are both exhausted and believe it or not – there is a lot of grief. My childhood questions are now answered and that’s healing.
Issie
You’re not alone Deborah. I believe this makes sense. My trauma wasn’t physical like yours. My father would have screaming temper tantrums. I don’t know what made him that way, but I know he saw a doctor for his ‘arthritis’ and I wonder if it was passed to him from his mother. Some things we just won’t know til we get to the other side.
Issie and Flora thank you so much for the encouragement. Psychological abuse sometimes I really feel is the worst. After. I left the site I tried to see if there was research on physical effects on adult CONQUERERS! Because as I read about the person I should have become statistically, I thought that’s not me. That’s not me! I am a person of faith and I thought of the scriptures “Remember from whence you have fallen”. By His Grace and Divine appointments of people sent with compassion and healing wisdom. I AM NOT A STATISTIC! So I am not a victim or a survivor, though God Bless all those who walked through that valley alive and living. With the God’s Grace , Love and Mercy, I am not a statistic. I have a long, happy, supportive marriage first marriage. Never abusive to my kids. Have relationship with others. I love unconditionally. I forgive my mother but she still likes to play psychological games. So I can tell my story with a happy ending and in my career I touched 500 children’s lives for the good. Not a statistic
I agree – one can forget the beatings. But the emotional abuse stays with you …… For life. But there are a few of us that mange to beat the odds. But, in some ways what I have learned in life has probably made me a better person. When I talk with someone who we have things in common – I don’t just sympathize I can empathize and truly feel for and with that person. Maybe some of life’s hard lessons are for some good later. Trying to find that good is the hard thing.
Sadly, I had so many realizations right before and after my moms death. What that causes one to do is the “if I had only known”. One of the best comforts someone gave me over this was by asking me a question. (My friend is very direct.). Are you GOD? I’m like “NO”. She said, only God knows all and he is the only one that can foresee. Did you do your best with what you knew? “Well – yes”. Then accept that you can’t be all knowing like GOD. And know he knows and we know you did your very best. ……..isn’t that a true friend for you?????
Issie
Is there research out there that gives evidence that telomeres are shortened by these traumatic events? And evidence that the shortened telomeres correlates with these health effects.
I can just see people using this kind of theorizing to write off Fibromyalgia as being psychological.
But if you did that you’d have to write off autoimmune disorders, heart disease and lung disease as psychological as well!
Telomeres are shortened by cellular stress factors, in particular oxidative stress. While telomere’s are clearly shortened by psychological stress it’s probably the inflammatory component present that’s doing the trick.
Shortened telomeres, for example, are also associated with cardiovascular disease, for instance – http://circres.ahajournals.org/content/94/5/575.full
They are trying to do this. Some very prominent docs at Mayo tried this before they got the wonderful neurology doc (Dr Brent Goodman) in there who knew about POTS. So many with our POTS symptoms were so wrongly DXd. They were of the opinion that we shouldn’t even have testing because it would encourage us to act out with our sicknesses. Thankfully other docs weren’t of that opinion and we got our test and now Mayo is becoming world known for helping us POTsies. If we had given in and conceded to what they were trying to label us with – we wouldn’t be having the research and results that we are. Yes many of us have had stresses in our lives – but whether those stresses were a partial cause of the illnesses we now deal with or not. The Truth is the illnesses are there and science can prove them. So many things get more clear with time. And there is more than one piece to EVERY puzzle.
Issie
While I like the article & the points it makes the questionnaire is a joke. It’s so narrow, for example, it doesn’t take into account childhood financial stress, problems with siblings (my only sibling is disabled & that had a huge impact on life), other traumas like partents with chronic illness, LGBT challenges etc. You can have a loving family but still face massive traumas and this questionnaire does NOT take that into account.
Good points Joh…
Deborah – if you come back to read this, thank you for sharing your history.
There is still so much we don’t know about chronic illnesses such as cfs/fm, lyme and many others. However, one thing is for sure. There is a clear mind/body connection. That is not to say that a person couldn’t have a perfectly lovely childhood and still be struck down with a genetic or environmentally caused illness. On the other hand, we all know that stress kills and if you survive significant trauma in childhood, it will most likely affect you physiologically.
I lived in an environment where I suppressed tremendous fear on a daily basis. And -shocker- my most significant symptoms as an adult now derive from adrenal dysfunction. I simply did not have the constitution to escape the effects of spewing cortisol on a daily basis for over 20 years. Clear, obvious mind-body.
Then, of course there is a blessed smaller percentage of people who are born with a constitution strong enough to escape serious illness (physical and psychiatric) despite difficult or traumatic childhoods.
It’s the old nature/nurture story. You’re born with a temperament that affects you, just as your environment (caretakers, school, everything else) affects you, emotionally and physically.
Many years ago a longitudinal study was done on Kauai (sorry can’t cite it from memory – no doubt easily found online) in which researchers followed a large number of children from birth to adulthood, looking at the effects of adverse childhood conditions. (I’m totally summarizing here. It was quite in-depth). They basically found that approximately 2/3rds of the participants from difficult backgrounds were, as expected, handicapped emotionally and physically as adults.
They also found that about a third had overcome similar adverse childhoods conditions to become productive, happy, healthy adults. They studied various environmental factors which helped these individuals succeed but they also found a certain percentage who seemed to overcome adversities on their own. They seemed to simply have been born with innate strengths.
Boy I’m wordy tonight…
Another small example I was just reading in Horowitz’s book Why Can’t I Get Better?, mentions research, which suggests that severe stress can cause atrophy of the hippocampus causing depression, ptsd and cognitive impairment.
And while I appreciate the findings of such research, to me it just seems like common sense. We are mind, body, spirit. Each affects the other.
I agree with what Tammie wrote above. I scored pretty high on the ACE test yet had many, many more traumatic events happen in my life in those first 18 years. eg. house burn down, 2 siblings die, 16 house moves, 7 schools, 2 states etc.
Also I found reading the results of the test upsetting. People who suffer from these illnesses have enough to deal with without such harsh diagnosis being given in this form. Hope is essential.
I understand that. I don’t think I brought out the fact that even the odds for getting these other illnesses are increased they are still relatively small. The change of getting COPD, for instance, is really, really small. It’s just that in a large population an increased risk of it shows up in people who have ACE scores. Your chance of coming down with it is still small. I added some wording to the blog to emphasize that.
I went to see my VA Pain Specialist today. She is so young fresh and open. At VA she treats a lot of Veterans with PTSD issues. I told her I felt my Fibromyalgia thumbs up their @$$ we will never know the cause, so let’s try this drug was nothing but lazy Doctors trying to win trips to Hawaii from Drug Companies. Don’t even get me started on Teitlebaum Clinics $2000 to walk through the door in 1996, I hate he is training the new generation of Fibromyalgia Doctors. Anyways, Dr Anne, uses, all different varieties of treatments. Acupuncture works well with me, the needles that stay in place for 2 weeks at a time. They totally relieve my shoulder, neck, and migraine pain, also today she actually relieved my PTSD intrinsic storm. Since I was successful with an experimental vagus stimulator late last year. The Military was testing it as a form of pain relief for soldiers. She is scheduling me for an injection to my vagus nerve. BUT she is also referring me to a PAIN PSYCHOLOGIST. Not that my pain is in my head, but my pain, my PTSD, compounds my body to respond in fight mode like a soldier with PTSD from combat and makes my physical pain worse from being on hyper vigilance all the time. Like my POTS, my Didactic memory, I have to have white noise, ear plugs, face mask, totally dark and I still wake up startled at any sound, this is with Flexril and 10mg of Melatonin. My husband always ask me when I describe an event how I remember all those details. Anyways all those things and so many more are from being in Fight mode. When a child is in a desperate situation,you learn how to read the lay of the land. You never know if you are going to get jerked out off bed because you folded the towels wrong. So this Pain Psychologist is supposed to help me get past my soldier and teach let go and deflate, relax, feel safe and then my body chemistry won’t work against me. Gosh, I just hope I don’t end up being a dumb@$$, with no recall, unable to speed read and fake psyche tests! You know so relaxed I watch daytime Television with my hand in my waistband and TV controller in the other, what am I thinking I just going to counseling not having a sex change!!!
Ha! You made me laugh. I love your animation. Let us know how it goes.
Issie
I need to find a pain psychiatrist! My body needs to unlearn the stress reaction
The right psychologist/psychiatrist can help immensely. I still get periods of anxiety/stress, sometimes from just being over-tired or over-stimulated. The relaxation techniques I’ve learned, and I’ve learned a few, have truly helped decrease my pain and increased energy. I am not cured but have improved. I have ME/CFS and FM.
I am really looking forward to going to the Pain Psychologist. Finally a therapist who will understand me. Not try to get me to relive my traumatic experience at nausem till I start disassociating and that’s a whole nother ball of wax . Because I phase out of the present to be a younger self and go to the circus or play with gypsies. Yeah, as my stress ratchets my pain sky rockets’. So this one will know what to do with me. See when you have Dis associative Disorder and PTSD, your brain only takes so much before it rescues you. That’s why I sometimes get inappropriately funny or the giggles. My first psychologist was driven up a wall till she realized what it was. I don’t have MPD, that’s rare but I slip in and out of my professional mode, soldier mode, personality kid, mother mode and teacher in public to feel safe I guess. Very few people do I ever trust with my personal mode. That’s the under belly, especially not psychologist. But we will see with this one.
I wish you all the best with your new psychologist. It sounds like you’re ahead of the situation by at least knowing what your diagnosis is and what makes it worse. Good on you for your bravery for confronting these issues.
I am really looking forward to going to the Pain Psychologist. Finally a therapist who will understand me. Not try to get me to relive my traumatic experience at nausem till I start disassociating and that’s a whole nother ball of wax . Because I phase out of the present to be a younger self and go to the circus or play with gypsies. Yeah, as my stress ratchets my pain sky rockets’. So this one will know what to do with me. See when you have Dis associative Disorder and PTSD, your brain only takes so much before it rescues you. That’s why I sometimes get inappropriately funny or the giggles. My first psychologist was driven up a wall till she realized what it was. I don’t have MPD, that’s rare but I slip in and out of my professional mode, soldier mode, personality kid, mother mode and teacher in public to feel safe I guess. Very few people do I ever trust with my personal mode. That’s the under belly, especially not psychologist. But we will see with this one.
Shouldn’t the death of a parent be included on this ACE survey? I was 6 years old when my mother died of cancer and my younger siblings were 4, 3 and 23 months old at the time.
Hi Denise,
They include death of a parent (loss for any reason) in the ACE questionnaire now. Lots of additional traumatic events are not included in the ACE score and study but still have been found to have long term impacts on physical/physiological health like what Joh and Peach, Tammie and Deborah and others mention. This includes the effects of emotional abuse from parents with mental illness and other difficulties as Issie mentions.
If it’s helpful, I’ve summarized some of this and cited some of the research in two blog posts – one on childhood trauma
http://chronicillnessblog.com/adverse-childhood-experiences-and-chronic-illness-boydhood/
and one for those of us (like me) who have an ACE score of ‘0.’
http://chronicillnessblog.com/chronic-illness-and-invisible-aces-adverse-childhood-experiences/
The good news is that trauma is actually treatable, even though it can take time.
I bet over 98 % of adults in the world could point to one or multiple childhood events that were stressful. Living is stressful. I believe that giving any kind of credence to this line of inquiry as part of, or contributing to, this devastating disorder is going to set back our progress and create additional barriers to wide acceptance.
Remember: Dr. Anthony Komaroff has stated that he saw a few cases of CFS/FM in the late 1970s, but the patients really began ‘pouring in ‘ in the 1980s. Read the history of CFS outbreaks in Incline Village and Lyndonville, NY in the mid 1980s. The local doctors appreciated that something unusual and important was happening.
As for those of us with neck / pelvis trauma history, The first commercial MRI was produced in 1980. Even now, there is so little known about Chiari, syringomyelia/myelomalacia, tethered spinal cord, vertebral artery syndrome, hypothyroidism, and more.
I scored a 1 – yes my Mom was depressed. She had terrible migraines lasting 2-3 days and horrible fatigue, and undiscovered ( until late) heart problems. Our physical state of health determines how we meet and handle stress. So, . . .
I know trauma plays a part. It even plays a part with epigenetics. What goes on around us, what we ingest, vaccines, and yes either happy environments or stressful ones. It all can switch on predisposed genes to certain illness. But with our family this is being passed on through generations. My sisters kids now have POTS, MCAS and EDS. Some are thinking that epigenetic changes within families – those mutations can be passed on with altered DNA and RNA. Some seem to think just because you have a gene and are predisposed to something doesn’t mean it will turn on in you. I don’t know – which way it goes. But I do know we inherit characteristics of generations of family members. One of my nieces really didn’t know her grandmother. But is so much like her. That was inborn. The jury is still out on this one. The one thing that is “certain” is nothing is certain. Things are always changing and hopefully we can learn as the do.
Issie
Issie,
Are you familiar with John Barnes myofacial release? They maintain that the soft tissues of the body can hold memory of physical and emotional trauma. So, releasing these ‘memories’ by releasing the soft tissue constrictions results in healing.
So, of course, I tried that , too. Four months worth. Still on the couch, but that doesn’t mean it hasn’t helped others.
Merida, yeah I’ve done the body work with massage. Quit powerful, Release. (We talked about it awhile back.) My massage therapist moved. One thing I learned from her I didn’t know – the right side of the body is female and left side male. If you have more issues on one side or the other – see if there is a connection with someone of that gender that you could be holding it on that side of your body. You have to pay close attention to your emotions and feelings to connect on this one. Cranial sacral work can do this too. A manipulative osteopath can do this.
My having EDS (Ehlers Danlos) – I dislocate things a lot. I have to put ribs in and neck in etc. Over the years I have learned to do this myself. If it won’t go I do traction and bracing to move things. As for Chairi – I’m Chairi 0. (But my last MRI actually looked better. So hoping what I’m doing may correct that too.) and is connected to EDS which also has some connections with POTS.
There really isn’t an issue of credence or not. The studies have borne out the fact that these types of events can have a physiological impact on all sorts of diseases
Just in the past six months they have been associated with
asthma – http://www.ncbi.nlm.nih.gov/pubmed/26028641
Chronic physical diseases such as cerebrovascular diseases, diabetes mellitus, tumor, respiratory and gastrointestinal diseases – http://www.ncbi.nlm.nih.gov/pubmed/25983602
Increased pain sensitivity – http://www.ncbi.nlm.nih.gov/pubmed/25965273
Epigenetics – http://www.ncbi.nlm.nih.gov/pubmed/25904853
ADHD – http://www.ncbi.nlm.nih.gov/pubmed/25890666
Increased blood pressure – http://www.ncbi.nlm.nih.gov/pubmed/25858196
Many sleep disorders – http://www.ncbi.nlm.nih.gov/pubmed/25777485
Inflammatory gene expression – http://www.ncbi.nlm.nih.gov/pubmed/25658624
Migraine – http://www.ncbi.nlm.nih.gov/pubmed/25540306
and of course many studies on depression, suicide etc.
I can see the worry about an ACE study in ME/CFS and FM given the controversies surrounding the illness but I don’t think there’s a cause to worry. Only one group has done a study of them on ME/CFS (the CDC) and they’re not doing them anymore.
Cort, I so appreciate the links you supplied. I know how much energy that takes! I also appreciate that there may be important genetic aspects of CFS/FM. I see it in my own family, and in the families of so many of my support group people. I dubbed this thing ” the gift and the curse” – as so many in the group have wonderful gifts – in intellect, in social responsibility, in caring about others, in ‘special’ sensitivities.
I also appreciate that you have the courage to look at all aspects of this illness and open it for discussion.
Thanks for your openness Merida and all the information you provide particularly on spinal issues which haven’t gotten enough attention 🙂
Exactly right Merida, it’s all so unknown and random that it’s not only pointless to discuss it actually damages the wider perception of the illness. Really annoys me when this blog posts this kind of stuff.
What’s random about studies that consistently statistically show associations between these events and all sorts of illnesses?
It also does apply to a subset of ME/CFS and FM patients. Should we just ignore them? It may be helpful for people who have experienced these events and later became ill to understand there may have been an association with them – that their illness did not necessarily drop out the blue.
It’s also fundamentally for me, at least, about rigorously following the science and this is what the science says and it says it pretty darn loudly – and it says it about all types of disorders..
Just the start of the article sums it up. She’s blaming her illness on a past event with no evidence. What about all the other people with the same health condition? People are fishing around in the dark for links that may or may not exist. Sure there’s people with problems caused by trauma, is a cfs and fibro blog the place to mention them? Not in my opinion no. Not even the first time such nonsense and damaging articles have been posted here. I just wish you’d stop and think before posting stuff that harms the perception of cfs suffers.
Tim, two years ago I would have been right there in the boat with you. I would have loudly screamed the “how dare you” for suggesting that someone’s past events could dictate such an outcome. But the more I study and the more research I’ve done on the power of the mind and perception – the more I see the connections. I didn’t want to entertain that possibility. There is science to prove bodily functions are altered – how could that be my doing???? There is a very enlightening man who is a bioscientist named Bruce Lipken. He has a lot of videos out on the web. Worth taking a listen to.
One way of thinking about this. How does biofeedback work? Mind power. Does it change the physiology of the function of the body – you bet. Can it actually change the labs and responses – yes again. The mind is very powerful. We need to look at how we view life and what our minds dwell on. What is our perception of our reality. A little tweak in that perception could be life altering.
Issie
Tim, maybe you have never experienced it but some of us have experienced what amounts to a Soldier in Combat without being able to defend themselves, like a tortured prisoners of war. As a Child Development Specialist I know the earlier a child experiences trauma the worse it is. And yes, this list is in no way exhaustive. Our dis-eases, get it, dis-eases are not psychological, but the chemicals our brains release or may have even been wired, since brain synapses are completely formed at 4, do affect how our bodies work and respond to trauma, illness and stimulus.
Maybe you have never experienced it but some of us have experienced what amounts to a Soldier in Combat without being able to defend themselves, like a tortured prisoners of war. As a Child Development Specialist I know the earlier a child experiences trauma the worse it is. And yes, this list is in no way exhaustive. Our dis-eases, get it, dis-eases are not psychological, but the chemicals our brains release or may have even been wired, since brain synapses are completely formed at 4, do affect how our bodies work and respond to trauma, illness and stimulus.
http://www.youtube.com/watch?v=jjj0xVM4x1I&sns=em
Video From Bruce Lipton on perception and the brain.
I believe in Creation not evolution like this guy. But what he has to say is interesting. I read that one of the docs who is helping patients with understanding their methylation mutations with MTHFR requires his patients to consider his lectures.
Issie
I don’t know if this link will be of interest to others. It’s something I wrote a while back on Cort’s blog on perception. (With a nice insightful response from Cort.) Maybe it will help someone with this idea.
http://www.cortjohnson.org/forums/threads/perception.2119/#post-2561
Issie
Thanks for the link to your post, Issie. It was helpful
I don’t fit the profile and have no bad experience in my first 18 years (why 18 years?, this is no science but speculation). I do believe that the stress mechanisme is stuck in overactivity but due to a somatic problem like nervus vagus or something else brain stem.
Same with me….stress response is going bonkers but for a different reason…
The questionnaire is a bit light – there are so many things people can find traumatic. I believe it can make an impact but I think also often in the way people treat themselves and cope with stressors. For instance if you suffer neglect you learn as a child to neglect yourself and that impacts your health.
Id be interested to read how much science there is behind this ‘lifelong epigenetic change’ in inflammatory response. It sounds a little bit like theory mainly because the point of epigenetic shifts is that they can change depending on environment – so I cannot see how they would be lifelong…?
They can apparently be shifted back…so maybe long term is a better term. They may be set in place for a long time.
http://www.ncbi.nlm.nih.gov/pubmed/25904853
http://www.ncbi.nlm.nih.gov/pubmed/23744967
There’s an interesting article in Discover magazine about epigenetics – how these changes can get programmed very early in life (through maternal behaviors and stress), how they can be lifelong, and how they can be transferred to the next generation.
http://discovermagazine.com/2013/may/13-grandmas-experiences-leave-epigenetic-mark-on-your-genes
What I find exciting and hopeful is that epigenetics are being found to be reversible (via diet, exercise, stress reduction practices, meditation etc). Trauma also induces epigenetic changes. A study by scientist Rachel Yehuda found epigenetic changes in combat veterans with PTSD. Those who recovered through trauma therapy had a reversal of these changes.
http://www.biologicalpsychiatryjournal.com/article/S0006-3223%2814%2900100-0/abstract?cc=y=
I had a hard time answering a lot of these questions simply because I am a child of divorce. The parent I lived with – my mother – did none of the things on the questionnaire except that she was devastatingly depressed for several years after the divorce. My biological father however has been a source of psychological abuse all my life. Since it asks “in the household” on all the questions, that does not seem to take into account those of us who experience the trauma of visiting a part-time parent. One single question about divorce just doesn’t seem to hold water for me as I’ve been diagnosed as having post traumatic stress disorder stemming from the divorce of my parents when I was four years old. If I answer the questions as they are written, I get only a 3, but if I take into account my biological father, I get a 5. I also have both FM and CFS.
Thanks for posting this. I remember eighteen years ago, when first diagnosed with FMS, it was a common supposition that childhood trauma was behind it (at least in the medical community I was working with).
I’m interested in all things that affect my M.E.–especially things I’m able to change for the better in some way. I ordered a book recently, The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma ~van der Kolk MD, Bessel. It doesn’t come out until September 8, so I need to be patient.
Cort, thank you for your clear and concise writing. I write–I think it’s what makes me very appreciative of good writing when I read it; Health Rising is one of my top resources.
Thanks also to all of you who share your thoughts, opinions, and stories through your comments. I appreciate you all.
I hope that one day there will be a real breakthrough for this terrible disease. But i am not so optimistic about that. The ‘battle’ is now going on for what 40 – 30 years now? I think over 20 years there are still the same discussions about the cause… nothing is really changed then. Most of us there lives are destroyed and we will never be better. Maybe it is better to be dead after all this misery. Sorry!
I believe some of us are born highly sensitive with a “trigger happy” ” fight or flight” and are more likely to go on to develop autoimmune illnesses. This type of person fights off viruses and infections with very few problems. I believe ME/CFS is an autoimmune illness. Autoimmune illnesses are more prevalent in women, and women are also more likely to suffer from anxiety.
Others, are born with less-than-optimal immune systems, they’re laid-back, nothing bothers them, they are prone to illnesses like cancer, and diabetes. These people have a hard time fighting off viruses and infections, and often succumb to disease. They are also more likely to suffer from depressive disorders.
Childhood trauma may be experienced by both types of people; whether, it is the child who is born extremely sensitive and is deeply affected by the environment around him/her, or the child who is not very sensitive at all, but is brought up under very tough circumstances. I believe the first type described is more likely to develop autoimmune type illnesses under stressful situations, and the latter type of person is more likely to develop cancer, or diabetes. Stress and the immune system are involved in both scenarios causing the immune system to become either extremely up-regulated, or to shift to further down-regulated.
Here’s an interesting read: The Bond Between Autoimmune Diseases and Highly Sensitive Persons
http://www.thetappingsolution.com/eft-articles/the-bond-between-autoimmune-diseases-and-highly-sensitive-persons-part-1/
Yes I agree. Some of us more sensitive ones are the “Yellow canaries”. We are tuned in and aware of our surroundings and very perceptive of things around us.
Interestingly, my sister and I function very differently. Yet we had the same type of exposure. She internalized and I was more the type of I’m not going to take this. She got anorexia from internalizing and her CFS is way worse than my fatigue. But my autoimmune system is more messed up than hers. When we talk about situations together I’m much more feeling and personal and she Is more matter of fact.
Interesting article. Thanks for sharing.
Issie
Thanks for the interesting links and ideas. The Emotional Freedom Technique is interesting – especially Robert Smith – fasterEFT. Geez, I’ve tried just about everything – to be honest. Hoping and hoping something would work – regardless of the what contributed to this illness. What about John Sarno? Read all the books, got the DVD program. Still nothing.
My recent neurosurgeon consult ‘sobered me up.’ He felt I had a spinal cord and brain trauma from the neck injury which started it all.
There is an important article – Myelopathy but Normal MRI : Where Next? Wong SH et al.
They list about 50 differential diagnoses for a suspected MRI negative myelopathy ie spinal cord problem. . These include Chiari and tethered cord, but also viral myelitis from these viruses: Herpes Zoster ( chicken pox – yes we had one case in support group!!), EBV, herpes simplex, cytomegalovirus, adenovirus, enterovirus, cox sacklike B virus, HHV6.
The authors also mention autoimmune myelopathy from: systemic lupus, Sjögren’s syndrome, sarcoidosis. They list 7 genetic myelopathies – like hexoaminidase deficiency .
There are also nutritional myelopathies – like B12 and copper deficiency, and more.
In my mind, considering CFS/FM as a potential myelopathy begins to pull together all of potential causes people have mentioned – genetic, immune, nutritional, injury, vascular, structural, toxic. They can all cause myelopathies.
Where is the test that would start something like the following:
After you became ill with CFS (or related illness), did health care, insurance, disability and other societal agencies insult you, put you down, humiliate you or make you fear for your physical wellbeing?
Did you often or very often feel that no one in these agencies thought that you were important, deserved to be looked after or looked out for?
Did you often or very often feel that those creating and working in these agencies were so self-absorbed that your basic needs for food, shelter, clothing, appropriate medical care, protection and living were neglected?
I’m not able to write more; you get the idea.
What do our high scores on this type of test do to our bodies?!
True it is devastating to be so d@mn sick you don’t even feel like being there only to be harmed by those who pledged to do no harm, sometimes arrogantly, sometimes sarcastically. Then you check out and have to pay to have nothing done and be crapped on! And yes so
many have so little. So many have been abandoned by spouses, loved ones, with no support waiting years for disability. It’s a living nightmare. I thank my husband every day for being so kind and faithful, he tells me not to because he loves me, just me, even though there are times now I sleep a hard fatigue sleep for 2 days without waking, until he wakes me to eat or drink or to take meds. He sometimes even has to wake me to chew and swallow. But for 36 years we have been in love.
I find it interesting that the majority, at this point, have a score of 0. I too scored 0. I agree that I now, after 26 years of illness, have an overreactive stress response but I am not convinced that childhood had anything to do with it. Mine was nearly Ozzie and Harriet – like.
If you look at the response of FMS and add the percentage of those between a level 1 and level 4 vs those in a 4 or higher and perceived that they may fare worse than those with a lower score – there is only around 1/3 in that lessor category. Then add in those that have a 0 – this is about 50% of those who took the poll in the lessor danger zone. (I didn’t take the poll until now and I bet there are some not participating.)
I’m not able to view the CFS poll since I’m in the FMS category. But if 50% people are in that abuse category – that’s pretty significant.
Issie
I told my Doctor Anne I don’t believe in Fibromyalgia anymore.I think it is lazy doctors who just don’t try to figure us out. In America, we have CFS/ME OR FIBROMYALGIA but other countries like in Holland they are finding causes and breaking diseases down and categorizing. No real break through on mends, but there’s not this cluster eff as we say in the military. Some of us are going to be alike but as we are awesomely and wonderfully made, so are we snowflakes. For too long the proverbial “they” have tried to fit us into a box. A one size fits all for snowflakes. But snowflakes can’t live in boxes, but we are getting blessed because a few brave and smart ones are venturing outside of the box ,too. Before you know it they just might start speaking snowflake!I love living outside of the box, it gives boxy folks something interesting to converse about.
Thanks for posting about Donna’s new book and for helping to support such an open discussion with so many view points.
Trauma is a very tricky subject in the field of chronic physical illness because it lends itself to blaming the individual and calling everything psychological and psychosomatic.
I’m a former family physician with ME/CFS x nearly 20 years who retrained as a body oriented psychotherapist (working with the unconscious through paying attention to sensation, imagery, impulses etc) and specialized in working with trauma. I’ve learned things they never, in a million years, taught us in medical school and that I had never heard of. There are actually many ways of working with trauma and facilitating recovery. Working with my own health as well as with clients with chronic illness has helped me see many links to trauma – in childhood and at other times in our lives – that I’d have never thought to look for in the past.
The research base in the field of trauma is significant and strong but much of the trauma we experience can be quite subtle. I think it will simply take time to allow ourselves, as a society and as a medical culture, to look at how biography affects biology, how mind and emotions are not separate from body, and how difficult life events of all kinds actually have profound impacts on our health and our lives – physical and physiological health and not just mental health.
I’ve been researching the role of trauma in chronic diseases of all kinds for 15 years and finding links to type 1 diabetes, inflammatory bowel disease, multiple sclerosis, Parkinson’s etc and more – ie: it’s not just those of us with illnesses that have no easy diagnosis that have links to trauma. 50% of adults in the US have a chronic disease. I think that helps consider the possibility that trauma is more common, and it’s effects potentially much more widespread, than we’ve ever imagined.
I bought Donna’s book and can’t wait to start it!
Veronique, I appreciate all the post you made and the links.
It’s nice to see there are physicians who are looking into this with a compassionate heart. So many are dismissive and causes even more suffering for that person who is already in silent and unbelievable pain. It wasn’t their fault that they were born into this particular family. Yet they not only have to “pay” for that with their endurance as a child. But, continue to “pay” for it as an adult. And very possibly pass it on to generations to come. Yet, with the way the healthcare system works and how any issues that are considered of “mind or thought” origin —- whatever the cause —– many try to hide it from everyone. It is that unspoken secret because of the stigma associated with it.
Mental illness is a physical illness. It is within the body and connected to the body. WHY do people continue to try to separate it. I know about mental illness — my moms DX was 5 different kinds. I went through my life never knowing what would come next. I was the protector to both my sister and my dad. (He did not protect us girls.) Yet, to the outside the facade that they saw was so very different than reality. Because of that and because we knew we had to keep up that appearance – opening up and talking about it is not an easy thing to do. You fear how you will be perceived and received. People don’t know how to react or respond to these revelations. And, it makes them uncomfortable. They don’t know what to say and tend to withdraw and say nothing. I APPLAUD THOSE OF YOU BEING BRAVE ENOUGH TO COME FORWARD. It’s not easy. Yet, it may help someone else and —-surprise—–it may help you.
We are all on a journey. We all are at different places of discovery. Opening your minds to all the possibilities isn’t saying that is true for you. What it is saying is if it is true for someone else – you can accept their truth. Therefore it is plausible that it is a possibility and an honest acknowledgement of the persons for whom it may apply. It opens ones minds to different possibilities and then we may just find what the connections are that will work for the greater. I personally don’t believe this is all the answer. But I’m open to explore it as a piece of the puzzle. It takes many pieces for the whole picture to come into view. We all are unique with our presentations and what we have experienced. It takes many facets to make up a diamond. Let us shine!!!
Anyway, Veronique, thanks for your post. They are very insightful and encouraging.
Issie
Hi Issie,
I’m glad it feels encouraging and potentially useful ’cause this really is quite the journey, eh?!
Thanks Veronique. The thing that was so startling about ACE’s for me was the connection to so many types of disease. It’s as if the impact followed whatever fault lines or biological weaknesses were already present.
Hi Cort,
“following the fault lines” – what an image! that seems like a great term.
you mentioned earlier in a comment that you also think it’s about timing and I’d agree.
My sense from the research is that timing influences risk for developing chronic illness and that it may be in the prenatal and perinatal time frame or possibly in our parents or grandparents. I
n other words, I suspect that trauma in our ancestors and before or around birth may affect particular organs undergoing periods of high development during critical periods. This could be what predisposes us to different physical and mental illnesses based on what is affected at that time to make it / us susceptible to a particular “fault” line and organ system pattern of reactivity and sensitivity.
Just as there are ways of treating trauma from childhood, there are also well developed approaches for working with trauma in the perinatal time frame as well as from transgenerational events. That’s the encouraging news.
I didn’t see anywhere mentioned about losing a parent. I was seven years old and my brothers ten and thirteen when we lost our father suddenly of a heart attack. We all suffer from chronic fatigue
It should be in there. That was what happened to Donna. Her father unexpectedly died during what was supposed to be a routine operation. He was apparently mistakenly given something that the doctors should have known could kill him.
Hi Denise,
I’m so sorry for your loss. And I’m so sorry all of you suffer from ME/CFS.
The original question, as in the ACE survey in Cort’s post was
“Were your parents ever separated or divorced?”
This question has evolved into a more open question of whether you lost a parent in childhood, for any reason. Felitti, one of the founders of the study, talks about how it’s about loss of any kind in some of the online videos of talks and conferences he’s given in recent years.
I might consider a number of episodes in my childhood quite traumatic that are not in this questionn
aire, but I also realize now (posthumously) that my paternal grandmother and my father both had CFS/ME
so I wonder more about the genetic possibilities. I also feel, though I know it’s very controversial, that vaccines could cause a cascade of DNA disruptions that could vary in individuals and account for a variety of so-called “auto-immune” diseases that could take many years to manifest.
Donna Jackson Nakazaw – the author of the book – emailed me to add some comments and link to clarify some stuff. She said she appreciated the lively discussion on the
http://aeon.co/magazine/psychology/how-childhood-biography-shapes-adult-biology/ if it’s helpful.
I just wanted your readers to know I would never imply that the ten ACE questions speak to all human adversity (it’s simply where this research began). Research looking at the link between all types of adversity is exploding and we now know it includes medical trauma, community violence, bullying poverty etc.
I would never imply that ACEs or childhood stressors are a sole factor or predictor in disease. Just that we have MISSED looking at this as another factor in disease. After all I wrote The Autoimmune Epidemic — all about environmental triggers (viruses, infections, chemical hits) combining and exacerbating the likelihood of a chronic condition. Genetics load the gun, but something in the environment pulls the trigger (and ACEs, like infections, are just one more trigger). Here are some passages from the book:
“Adverse Childhood Experiences are linked to a far greater like- lihood of illness in adulthood, but they are not the only factor. All disease is multifactorial. Genetics, exposures to toxins, and infection all play a role. But for those who have experi- enced ACEs and toxic stress, other disease-promoting factors become more damaging.
To use a simple metaphor, imagine the immune system as being something like a barrel. If you encounter too many environmental toxins from chemicals, a poor processed-food diet, viruses, infections, and chronic or acute stressors in adulthood, your barrel will slowly fill. At some point, there may be one certain exposure, that last drop that causes the barrel to spill over and disease to develop.
Having faced the chronic unpredictable stressors of Adverse Childhood Experiences is a lot like starting life with your bar- rel half full. ACEs are not the only factor in determining who will develop disease later in life. But they may make it more likely that one will.
In the midst of that quest, three years ago, in 2012, I came across a growing body of science based on a groundbreaking public health research study, the Adverse Childhood Experiences Study, or ACE Study. The ACE Study shows a clear scientific link between many types of childhood adversity and the adult onset of physical disease and mental health disorders.
These traumas include being verbally put down and humiliated; being emotionally or physically neglected; being physically or sexually abused; living with a depressed parent, a parent with a mental illness, or a parent who is addicted to alcohol or other substances; witnessing one’s mother being abused; and losing a parent to separation or divorce.
The ACE Study measured ten types of adversity, but new research tells us that other types of childhood trauma—such as losing a parent to death, witnessing a sibling being abused, violence in one’s community, growing up in poverty, wit- nessing a father being abused by a mother, being bullied by a class- mate or teacher—also have a long-term impact.
Thanks for the link to this article. It answered even more questions for me and gave me more to think about.
Sensitive subject – very emotional one for whom it applies. Good to know there is advancement being made to help those with “the bear” still out there. (Read the link – for sure worth the read.)
I do feel this is not the whole picture. But for me is one piece of the puzzle. Thanks for bringing this to light.
Issie
Cort, I feel too many people lack the understanding of the science behind mind/body physiology. When some people hear that their disease has a brain (mind) component, whether from past trauma or not they (some people) get their backs up. As someone said “how dare you”. However, to me this is fear speaking. Not knowledge. And no it does not push our cause backwards discussing how anxiety-past or present, depression-past or present, PTSD or any happy or sad or angry events affects our BODIES. Please people, do some research before you criticize what’s written in this blog or any other blog. Cort publishes tons of info. You don’t have to agree with everything written but wow the anger I hear from so many out there makes me wonder why? What good are you doing?
I scored 0. My childhood and adolescence were not perfect but when I talk to other’s about their childhoods, I realize how fortunate I was to be so loved.
In ’65 when I got Crohn’s disease and nearly died, one doctor told me it was a psych disease and had to do with overly dependent mothers. He didn’t know my very short mother was standing behind him. Trust me, she changed his mind. Not just with her presence, but by listing every relative on her side that had Crohn’s or ulcerative colitis. She had some other statistics, also. At that time very few doctor’s thought there was a genetic component. She mentioned the high incidence in Ashkensai Jews. But no one was aware of these things at the time.
I questioned how a disease that had a distinct pathology on my surgical slides could have a psych cause.
The mind and body one; the mind we are talking about is the brain, very much part of the body.
Two years after my dx I had another serious flare. My brother, who I was very close to, died during the flare. I had a tough year; clearly this trauma affected me.
I did see a wonderful psychiatrist, hoping he’d tell me the Crohn’s was a psych disease. He said it wasn’t and I cried for the whole session.
I stayed with him, got better and became a stronger person emotionally. I came back when strange things started physically and every doctor I saw told me it “was in my mind and to see a psychiatrist.”
Twenty years later I got CFS, and he was there until he retired. “I had the priviledge of meeting your mother. You got one of the best ones, you know.”
The mind and body are connected but I wonder how something can take place twenty, thirty years later that is physical.
The actually ACE test is really more comrehensive. This short test needs to be more diversiied. If taking this test, as written, I only score 2-3. If changing the parameters to sibling, 2 years older, I get a six. The “6” definitely plays out in my circumstances and health.
That’s a big shift!