Any research about ME/CFS being CAUSED by emotional trauma?

[PracticingAcceptance]

I realise the title of this post is going to anger some people. I want to know if there has been ANY robust evidence found to show that depression or a stressful event that happened years in the past could cause ME/CFS.

My personal situation is that I suffered with depression as a result of family problems. I 'left' my parents suddenly aged 24 because of my mother's emotionally abusive behaviour. I became very depressed while I realised her behaviour could be classed as abuse (that realisation only happened after I got away from her), and I processed a lifetime's worth of abuse in two years. A few months after I recovered from depression, I got ME/CFS.

I'm still not in good contact with my parents because of their current behaviours. I still see a psychotherapist to help me figure out if there's any way at all to have a non-abusive relationship with my parents.

This therapist believes that my ME/CFS was caused by 'mum stuff'. I've told her that ME/CFS isn't depression - people don't get depressed and THEN get ME/CFS. Rather, they get ME/CFS and become depressed because of the symptoms. Her response was that not everyone goes 'low contact' with their parents - are there other people who go 'low contact' with their parents and then get ME/CFS because of that? Frankly the idea of that seems ridiculous to me because ME/CFS is not a mental illness. ME/CFS doesn't spontaneously occur to anyone with serious family issues.

I can believe that people get ill with anything after going through very stressful things - heart problems, respiratory problems - wherever their body is weak, it will get worse. I can believe that people who have been abused suffer more than the general population with illnesses because of the stress. But I just can't believe that ME/CFS is CAUSED by emotional trauma. There's got to be a biological cause for it specifically, even if we don't know what it is yet.

Whether you can show me some evidence that ME/CFS can be caused by emotional trauma, or you tell me there isn't any research like that, I will be able to your information to talk to my therapist.

Please also tell me anecdotally if you have experienced serious emotional trauma that you believe caused your ME/CFS. Or, if any of you have had serious family problems/experienced abuse/don't speak to your parents.

 

[Runner5]

Sounds like the fibromyalgia hypothesis, which I thought was pretty bunk.

When I developed CFS I had achieved some lifelong goals, taught college, ran multiple businesses, had my college degrees wrapped up and two children with a happy marriage and a good income and I had left childhood stuff behind for 20 years. Despite ups and downs and a divorce to my first husband -- nothing I experienced after I left home was anything on the scale of what I went through as a kid.

I went through some really serious abuse, once almost dying but it also drove me to be an overachiever and avid self-help book reader ;-P My mother died about 15 years ago so no I don't speak to her, I don't talk to most of my family whatever is left (most have died) but I also moved 3,000 miles away and I never go back and don't plan to - ever. Seriously, I will never ever go back.

Currently despite being fatigued non-stop -- I'm a very happy person, but then again I have the worlds best napper cat. He doesn't think of me as fatigued, just one of the better humans who are dedicated to lounging as much as he is. I'm doing it right.

I'm super lucky. I live by the ocean. I have a cool family. I have a great cat, previously mentioned. I have birds at my feeder and WiFi. We're middle class and I don't have to work. Life is pretty perfect except for one little problem... ;-P

 

[RWP (Rest without Peace)]

@lior

After just skimming your first paragraphs, I seem to remember Dr. Naviaux mentioning a few things that might be helpful. You could check his keynote address at the Stanford Symposium first, but I'm sure others here will remember also and give you more ideas.

So sorry. For us (PWR & me), emotional stress during end of college/beginning of seminary (not to mention physical stress) definitely contributed to our "perfect storm" combined with mono. Also, it is the worst trigger currently for PEM, since unlike physical activity, it isn't automatically "finished," leaving us devastated for weeks/months/years.

RWP + PWR

 

[Kenshin]

I think it's worth exploring.
What does repeated extreme stress and trauma do to the body?
What happens to a growing body if the trauma it is exposed to creates enough adrenaline to makes the heart feel like it will explode and the limbs go limp?
If that happens every day or every week over a span of years, the chemical build up might do all sorts to the Central Nervous System. They call repeated trauma "Complex PTSD."

 

[alex3619]

There is no theoretical reason why emotional trauma cannot cause ME according to current understanding. It just seems to be very rare. On the other hand there is also data to show depression can be caused by undiagnosed infections, and other physical traumas. The standard of research does not appear to be good enough to tease out the issues, and loose association is simply not good enough even when they can find it.

 

[Kenshin]

There is no theoretical reason why emotional trauma cannot cause ME according to current understanding. It just seems to be very rare. On the other hand there is also data to show depression can be caused by undiagnosed infections, and other physical traumas. The standard of research does not appear to be good enough to tease out the issues, and loose association is simply not good enough even when they can find it.

During a remmision my deppression lifts, but the question is does my mood normalise as an after response (because Im happy to be feeling better). Or because the CFS was directly causing deppression by causing a chemical imbalance.

 

[ChrisD]

I'm so glad you posted that @lior as I wanted to ask the same thing. My ME occurred during a year when I became run-down/burned out commuting to work and working hard, with family issues going on in the background, my parent's divorce was causing me a lot of emotional stress. When my immune system was really low I contracted a virus and lo and behold CFS/Fibro/ME started, so throughout my illness experience I have constantly pondered if my emotional issues were causing it all due to numerous 'professionals' telling me so, and of course every family member or friend attributing it to the divorce>

I'm at a stage now where I have worked through this stress endlessly with psychotherapists and through meditation and EFT etc. and I have really come to terms with it all and have good relationships with my family. My condition stays relatively the same and I am pretty sure I am loaded with viruses, pathogenic bacteria. But like you I would like to see studies or evidence to prove this to my doctor and friends/family.

 

[Hip]

I want to know if there has been ANY robust evidence found to show that depression or a stressful event that happened years in the past could cause ME/CFS.

@femtosecond99 posted four papers showing major life stressors (eg divorce, bereavement) in the months preceding the onset of ME/CFS:

• Precipitating factors for the chronic fatigue syndrome
• Life events, difficulties and dilemmas in the onset of chronic fatigue syndrome: a case-control study
• Cumulative life stress in chronic fatigue syndrome
• Critical life events, infections, and symptoms during the year preceding chronic fatigue syndrome (CFS): an examination of CFS patients and subjects with a nonspecific life crisis

Personally, I buy this stress connection to ME/CFS, but I don't think stress alone is the cause. I think the stress may simply elevate cortisol, which is known to weaken the antiviral Th1 immune response, making it harder for the body to combat any ME/CFS-associated viral infection you might be unfortunate enough to catch during the time of stress.

This proposed stress-elevated cortisol + virus cause of ME/CFS would neatly tie in with Dr Chia's discovery that giving a patient corticosteroids drugs (which is the equivalent of raised cortisol) during the time of an acute viral infection is a recipe for creating ME/CFS.

It may be that the stress- or corticosteroid-induced immune weakness allows an ME/CFS-associated virus like coxsackievirus B or Epstein-Barr virus to more deeply insinuate itself into the various compartments of the body (eg the brain) during the acute phase of the infection, which then makes it hard or impossible for the immune system to fully clear the virus.


With the above interpretation, it would mean that although stress / corticosteroids at the time of the initial acute infection facilitated the establishment of a chronic infection, even once stress levels return to normal, you are now left with a chronic infection that you cannot easily get rid of.


But the trouble with especially old-school therapists is that they usually do not see any further than their own limited world of psychological cause-and-effect. They often don't appreciate or understand that there is more involved than just thoughts and emotions. They don't have the skillset to consider explanations that involve both psychological factors and biological factors such as infection.

Thus they will tend to dismiss any viral involvement, or the involvement of any other biological factors, and often concoct an ornate and elaborate theory involving purely a psychological explanations.

Fortunately the newer generation of psychiatrists have a better understanding of how biological factors can underpin mental symptoms, so in the future, I hope they will start incorporating biological factors into their explanations.

 

[alex3619]

During a remmision my deppression lifts, but the question is does my mood normalise as an after response (because Im happy to be feeling better). Or because the CFS was directly causing deppression by causing a chemical imbalance.

These are the kinds of issues that require specific studies to tease out cause and effect. We simply do not know, or if its confounded by something else, or if the two work together a bit.

 

[PracticingAcceptance]

Thank you so much all for your responses.

@Hip you are a star. Thank you for such a thorough response.

@RWP (Rest without Peace) this is what I found when I googled "Dr. Naviaux Stanford Symposium"

The first 2m30 are 'thank yous' so if anyone wants to watch it, you can start there. I got through 6m so far (video can be tricky for me).

@Runner5 I'm also "an overachiever and avid self-help book reader"... thank you for sharing your story. I'm glad you've got happiness and gratitude in your life.

@ChrisD I'm so glad you've got good relationships with your family now... I'm not sure if I will ever be able to have that. It's useful for me to know that despite you being in a better place emotionally, you're still not healed from ME/CFS. That fits with what @Hip says.

I'd quite like to know of all the people that go through significant stressful events, whether they become ill in the following year or two, and with what they become ill with. It can't be only ME/CFS that has this pattern.

Even if my ME/CFS was caused by abuse, I'm not sure it's useful information: it doesn't heal me, and it doesn't show other people how to prevent it from happening to them.

 

[Wishful]

I can't remember any emotional trauma before I developed ME. I agree with Hip's hypothesis that it can contribute to a state where we are more susceptible to the factors that trigger ME/CFS. I think it would be rare for it to be the major contributor to developing ME/CFS.

 

[lafarfelue]

Even if my ME/CFS was caused by abuse, I'm not sure it's useful information: it doesn't heal me, and it doesn't show other people how to prevent it from happening to them.

Perhaps not yet, but it may down the track once more is known about various subtypes and things like (example only) mitochondrial mutations predisposing individuals to ME/CFS.

I think it's good to be aware of patterns or major events in the lead up to ME/CFS diagnosis, even if it doesn't necessarily mean anything just now.


For what it's worth, I had a few years of horrendous emotional trauma (as well as deeper ongoing childhood trauma) prior to coming down with ME/CFS. I've always had a need to pace myself for as long as I remember, but ME/CFS reared its head very gradually over the few years of intense trauma.

In relation to my childhood trauma; my mother displays strong behaviour of narcissistic personality disorder. I've had a lot of therapy over the past couple of decades, but it wasn't til I got ME/CFS that I realised I needed to go as low contact as possible with her. Maintaining boundaries and dealing with that behaviour is SO exhausting. I do feel physically better/healthier for it. I think because mental and emotional exertion tax me more than physical exertion... but I also don't need to deal with the physical fallout of upset stomaches, poor sleep etc due to the stress of being around that behaviour.

(Sorry this is very wordy, it's late for me and my cognition has been crumby recently too.)

 

[ScottTriGuy]

FWIW, fortunately, my most traumatic events have occurred since ME as a direct result of the health care system.

The other day I was chatting with a woman who was abused as a child, multiple doctors she told when she was a child denied the truth of her reports. She said it was more traumatic to be disbelieved by physicians than the abuse itself.

I would think that childhood abuse may contribute to the overall stress on the body (in addition to viral, toxins, etc) that may make a person susceptible to ME, but I doubt it unto itself would be a cause.

 

[ChrisD]

I'd quite like to know of all the people that go through significant stressful events, whether they become ill in the following year or two, and with what they become ill with. It can't be only ME/CFS that has this pattern.

I've also wondered if emotions effect other conditions the same way and if the studies that @Hip provided have only occurred as a consequence of there being such little research on ME in the first place, combined with psychologists probing at this illness and motivating that course of research. Those 4 studies may well apply to MS, Lupus, cancer, Crohns etc. and so on.

 

[Hip]

This study found stress was linked to multiple sclerosis development, and another found that stress can trigger MS flare-ups.

Let's hope that the world of MS never gets invaded by these dubious psychologists and psychiatrists in the way ME/CFS has, otherwise MS patients too may be told that their illness is "all in the mind", or that the "they are only ill because they think they are ill".

 

[BadBadBear]

I was living in a very abusive household when I was about 15, and I think it was the first time I had mono... I got very tired and 'down-regulated', got taken to the doctor, and eventually got a severe beating and PTSD from my biological mom and dad fighting about the medical bill. I do think my issues are related to trauma, but moreover that I wasn't able to recover from mono properly because I was severely traumatized at the time it happened.

I don't know how you pick apart which factor was 'most' causative, in this scenario.

My relapse as an adult occurred during a really stressful period taking care of my dying adoptive parents, I kicked into shingles and then never really got well again.

Again, whether stress or emotional trauma or whatever was at the root, my body could not fight off the viruses due to what was happening.

I don't know how those of us who did suffer extreme abuse can ever sort it out, and I don't need a medical professional or therapist telling me that they have any answers, either. Even if we are mentally fractured into pieces by abuse, we are a living organism that cannot be defined by what we have endured or by what diseases we carry. There is a much larger picture, and even the best therapist or doctor cannot really know what it is.

 

[FinRinTin]

As I remember correctly Nancy Klimas said in a talk that the combination of a traumatic experience (a high stress situation) combined with an external pathogen like a virus or a chemical toxin is usually the culprit for GWI or CFS.

This is also my personal experience.
A prolonged phase of high stress ( losing my job; separation from the mother of my son) weakened massively my immune functioning and so EBV could give me the final kick in the guts

 

[WoolPippi]

But I just can't believe that ME/CFS is CAUSED by emotional trauma. There's got to be a biological cause for it specifically, even if we don't know what it is yet.

dr. Selye mapped what stress does to the body (of a mouse). He even coined the term "stress" (when he actually meant "stressor"). He has solid evidence how stressors cause physical changes. He also shows how the adrenals give out, after a period of erratic cortisol production.

his book is called The Stress of Life. by Dr. Selye.

This research concerns the stress system of the (human) body. Pituitary, Amygdala, Adrenals. Effects are measurable in stomach acidity, intestine walls, intestine motility, food absorption and immune system. And blood pressure! (ever think why blood pressure matters? it presses the minerals into your tissues and organs! I had malnutrition because of low BP. I had very expensive pee.)

My personal believe is that mitochondria are also affected by stress. As are cell (wall) functions. Here lie the connections to micronutrients (minerals, vitamins) and the DNA-mapping so many people on this site do (enzymes not working properly).

This myriad could easily cause ME/CFS because normal function of the body stops, it's barely hanging on. Even the link with bacteria/viruses is there since the immune system is involved (high cortisol = low immune system). This way bugs and viruses get a chance to settle in the body and alter normal functions.

This is why any and all of the factors can pop up in recovery stories: anti-biotics; stressors; DNA-support; supplements; adrenal support; mitochondrial support. But the stress-thing seems a constant. Getting out of Fight or Flight and into Rest & Digest. The Relaxation Response has been researched and gives the opposite bodily symptoms as the ones dr. Selye found after prolonged stress.

The one thing that does not cure us is Psychotherapy. You did not think yourself ill.

 

[WoolPippi]

are there other people who go 'low contact' with their parents and then get ME/CFS because of that?

nah, going lc with my parents is what helped me recover

I did have to do some healing though, because of the emotional damage they've done. I did EMDR and it works like a charm! This is a physical thing, not a psycho thing.
Also did a lot of crying.
Things faded, over time. It helped to find new ways to fill my days. Stop thinking about it, eventually.

They never held me as a baby. As a result my nervous system has not been calibrated right. I never felt safe. Always on full alert. The body, that is. This is constant stressor.

Add to that faulty enzymes which make it impossible to use vit D and vit B12 and folic acid properly.

Add to that always waking up after 4,5 hours of sleep. A life long. (turns out to have a physical cause)

Add to that oestrogen dominance.

All these four tax the adrenals severely. Especially the sleep thing, the oestrogen-thing and the never safe thing. (Adrenals make progesteron, in all humans, to make into cortisol)

Ofcourse there's been emotional trauma. A brother dying. Only discovering at the age of 30 that my father is a lunatic. And that I had internalized him and I had never been me. But that did not cause my adrenals to collapse. Nor did it give me ME/CFS.

I fell ill years later, when we returned home from a trip to Oslo where I did apartment hunting on my own and cared for my partner who had the flu. On the last day he confessed he does not want to move to Norway with me. It was such a shock. I had a melt down in the subway of Oslo. Came home in a daze. Fell in bed. Got his flu. Couldn't get up for months. Didn't remember my own name during the day. (Thank god for the nightly jolts after 4,5 hours of sleep, the one hour in the day my dopamine was riding full throttle).

Of course we had visited a farm just a few weeks prior that later on proved to be riddled with Q-fever...

So whatever pushed me over the edge, the Q-fever or the emotional breakdown, I'll never know.

Learning to be safe, coaching my body to not interpret everything as a threat, has helped in my recovery. Hormonal replacement has also been key (both progesteron and cortisol). The sleep thing is caused by large intestine swelling up because an air bubble blocks the way. I'm on a liquid diet now and sleep 6 hours instead of 4,5. I play my brain chemistry like it's an orchestra, I'm so damned sensitive. Choline, Zinc, Lithium (the mineral, not the drug), vit D in larger doses, mB12, metafolin, staying away from vanillin.

Soooo....
no easy answer. Except: it's never just an emotional trauma. If it is at all.

Good luck. Let me part with the wisdom of my father, who dismissed all the blood panels I showed him. He knew the cause of my ME/CFS and I should bloody well listen: "It is because you do not give back enough to society!"
So there you are. I can send him around to your place? He'll diagnose you too.

 

[PracticingAcceptance]

Hahaha. @WoolPippi it is so clear you are a special person. Clever and funny. To have gained enough knowledge and discipline to 'play [your] brain chemistry like it's an orchestra' is incredible and admirable.

@WoolPippi @BadBadBear @lafarfelue thank you for sharing your experiences of abuse. As an aside, I strongly believe that being open about it (when safe) around people who have not been abused is helpful in the long term mission to reduce abuse in society. I know it's not always easy to be open - there can be a lot of judgement from people.

@FinRinTin @ScottTriGuy I'm sorry for the hardships you've experienced, too.

I'm not well enough to take in the more technical stuff you're all saying, but I will re-read one day. Thank you for all your perspectives.