(not a recommendation) ME/CFS and Freeze: using Naviauxs research to explain the role of trauma

Sly Saint

Sly Saint

Senior Member (Voting Rights)
September 14, 2018 Veronique Mead, MD, MA

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This post introduces the relationship between chronic fatigue syndrome aka ME/CFS and freeze and similar death-like states such as hibernation.

You’ll learn how recently identified metabolic changes are regulated by the autonomic nervous system to cause symptoms. And why they are real and not psychological. You’ll also hear about the well supported science of polyvagal theory, the social nervous system and the dorsal vagal state that make sense of symptoms and why some of us with ME/CFS are more purely exhausted (or “tired”) while others feel more “wired AND tired.”

A second post will explain more fully how some of us develop ME/CFS when others with exposures to similar environmental stressors or adversity do not. A third will discuss implications for treatment. I’ll be working on a pdf and kindle version and post them here as soon as they are available.


I’d love to hear how this lands for you and whether or not it fits or helps make sense of your symptoms.
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full article here:
https://chronicillnesstraumastudies.com/mecfs-freeze/

eta: as far as I know this doctor has nothing to do with Robert Naviaux

About Veronique Mead, MD, MA
MD turned trauma specialist, blogger, researcher, patient, sharing science on how adverse life events and trauma increase risk for chronic illness and tools for healing.


 
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I've read all I can stand of this. It is a blog written by a woman who was a doctor in general practice, but after experiencing intermittent bouts of fatigue over some years gave up being a doctor and retrained as a 'trauma therapist'.

She has built herself a model of what she thinks causes and can cure chronic illnesses based around various alternative psychotherapies including one called Somatic Experiencing. Her reference to Naviaux work seems to be entirely to give some sense of sciency sounding legitimacy to her theories, hanging them on the hook of being stuck in a hibernating state which she says is caused by trauma, past or present.

A lot of is is wrapped around her own personal story, though she admits she had to dig back to grandparents to find some trauma to hang her ideas on in her case, and she also admits she still suffers from fatigue and has to pace carefully.

I've read enough to know it's not for me. It's not scientific, it's alt. med. and unproven.
 
Trish said:
I didn't read it all.
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I've just skimmed through and the fact that she keeps putting Dr Robert Naviaux Research in the heading is extremely deceptive. I whizzed through to the treatments sections and they are all 'therapies' and links to various kinds of therapists websites.
https://chronicillnesstraumastudies.com/therapies-chronic-illness-stress-triggers-perception-threat/

Unfortunately, I think we are probably going to see more of this; using the B in BPS to justify the PS BS.
 
It may sometimes be good for us to see the problems which may be faced by doctors in the ways in which patients may present. Members of this forum are not necessarily representative of the full range of beliefs which patients have of the illness-especially of the beliefs of those who may not have it.
 
NelliePledge said:
Followed a couple of links and got to a page that’s all about “healing from trauma” including “multigenerational trauma”which is apparently where your ancestors go through a trauma and then pass it on to you.......
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Veering a touch OT, but this put me in mind of a Max Pemberton Daily Mail piece from Dec 2017 on transgeneration trauma.

https://www.dailymail.co.uk/health/...rist-Dr-Max-Pemberton-makes-rethink-life.html
The birth of epigenetics — the study of how our environment affects genes and the way they are expressed — has produced some startling revelations.

This week, a fascinating piece of research was published which flew in the face of much of the basic understanding of genetic inheritance.

It showed that childhood trauma can be passed on from one generation to the next — and that this can have serious implications for the mental health of the family's future generations.

So those early ideas weren't so fanciful after all. The study looked at the offspring of children displaced due to World War II, and showed that childhood trauma altered genes that could then be passed on to future generations.

These altered genes made people more susceptible to mental health problems such as depression.

The study found the next generation was four times more likely to experience mental health problems.

Not only does this show how immensely complex genetics are (we clearly have only the faintest grasp of them), but this research has tremendous implications for both society and individuals.

Poverty and inequality does not just affect this generation, it jeopardises the mental health of the next — and we're storing up trouble for ourselves unless we do more to improve the living standards of poor children.
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Pemberton didn't give the reference, but publication dates and contemporaneous reporting in the Telegraph indicate it was:

Association of the World War II Finnish Evacuation of Children With Psychiatric Hospitalization in the Next Generation.
Santavirta T, et al. JAMA Psychiatry. 2018.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5833542/

Abstract
Importance: Although there is evidence that adverse childhood experiences are associated with worse mental health in adulthood, scarce evidence is available regarding an emerging concern that the next generation might also be affected.

Objective: To compare the risk of psychiatric hospitalization in cousins whose parents were vs were not exposed to the Finnish evacuation policy that involved a mean 2-year stay with a Swedish foster family.

Design, Setting, and Participants: This multigenerational, population-based cohort study of Finnish individuals and their siblings born between January 1, 1933, and December 31, 1944, analyzed the association of evacuee status as a child during World War II in the first generation with the risk of psychiatric hospitalization among offspring in the second generation. Evacuee status during World War II was determined using the Finnish National Archive's registry of participants in the Finnish evacuation. Data on evacuee status were linked to the psychiatric diagnoses in the Finnish Hospital Discharge Register from January 1, 1971, through December 31, 2012, for offspring (n = 93 391) born between January 1, 1950, and December 31, 2010. Sex-specific Cox proportional hazards regression models were used to estimate hazard ratios for risk of psychiatric hospitalization during the follow-up period. Because offspring of evacuees and their nonevacuated siblings are cousins, the Cox proportional hazards regression models included fixed effects to adjust for confounding factors in families. Data analysis was performed from June 15, 2016, to August 26, 2017.

Exposures: Parental participation in the evacuation during World War II (coded 1 for parents who were evacuated and placed in foster care and 0 for those not evacuated).

Main Outcomes and Measures: Offspring's initial admission to the hospital for a psychiatric disorder, obtained from the Finnish Hospital Discharge Register from January 1, 1971, through December 31, 2012.

Results: Of the 93 391 study persons, 45 955 (49.2%) were women and 47 436 (50.8) were men; mean (SD) age in 2012 among survivors was 45.4 (6.58) years. Female offspring of mothers evacuated to Sweden during childhood had an elevated risk of psychiatric hospitalization (hazard ratio for any type of psychiatric disorder: 2.04 [95% CI, 1.04-4.01]; hazard ratio for mood disorder: 4.68 [95% CI, 1.92-11.42]). There was no excess risk of being hospitalized for a psychiatric disorder among women whose fathers were exposed to the Finnish evacuation policy during World War II or among men whose mothers or fathers were exposed.

Conclusions and Relevance: In a prior follow-up study of the Finnish evacuees, girls evacuated to Swedish foster families during World War II were more likely to be hospitalized for a psychiatric disorder-in particular, a mood disorder-in adulthood than their nonevacuated sisters. The present study found that the offspring of these individuals were also at risk for mental health problems that required hospitalization and suggests that early-life adversities, including war-related exposures, may be associated with mental health disorders that persist across generations.
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Parental psychopathologic conditions did not explain the findings in our study, but this result only pertained to disorders in hospitalized parents; thus, future work is needed in this respect. We also speculated that mechanisms could include influences on family processes, including parenting and physiologic (including epigenetic) pathways, many of which have been observed among children exposed to other forms of disadvantageand many of which can be directly targeted by evidence-based interventions reported to improve outcomes of displaced individuals.
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https://www.telegraph.co.uk/science...a-can-inherited-future-generations-new-study/

In short, it didn't show 'childhood trauma altered genes', because gene expression wasn't under study. Pemberton may also have had this earlier, publicised small study on trauma in Holocaust survivors in mind:

Holocaust Exposure Induced Intergenerational Effects on FKBP5 Methylation.
Yehuda R, et al. Biol Psychiatry. 2016.
https://www.biologicalpsychiatryjou...tract#/article/S0006-3223(15)00652-6/fulltext
 
Snowdrop said:
Even if we supposed the idea of transgenerational trauma to be correct how does this fit with people becoming chronically ill?
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Trish said:
And if it's a genetic change she's talking about being passed from one generation to another, how is wacky therapy (or even sensible therapy) going to change that?
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Well, precisely. Browsing the site it seems like she thinks changing environmental factors might be of benefit, so whether she thinks she can 'switch on or off' genes that have supposedly been affected by ancestor trauma with changes to environment, I don't know.

Chronic illnesses of all kinds, including autoimmune diseases such as type 1 diabetes, have increasingly been found to be the result of interactions between genetic and environmental factors. As I’ve described in my post summarizing the science linking chronic illness and trauma, environmental factors can include stressful and traumatic events: in prenatal life, in childhood, and even in the lives of our ancestors. Other nongenetic risk factors include insecure attachments and stressful relationships between parents and their children in early life. And risk for chronic illness can also be influenced by diet, infections, and toxins, among other factors.

Environmental factors are what intrigue me. These are factors that I have a chance of influencing. I keep thinking that there must be changes I can make in my life and in my own environment to reduce my symptoms. Or, better yet, to recover fully from chronic fatigue and the related symptoms. I’m beginning to think that epigenetics may help explain HOW this great desire might be reasonable. It suggests that working with factors that are within my control may actually be valid, and even effective. Even if they do seem to be (very) long-term endeavors. Approaches I’m working with include ongoing trauma therapy; working with the effects of prenatal, birth and early life events; looking at and working with my geneology; and changing my diet.
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There is a list of potential causes of trauma on one of the pages, which I'd imagine given one or two generations of ancestral trauma would entail most people on the planet being transgenerationally traumatised.

Edited to beef out quote
 
Trish said:
And if it's a genetic change she's talking about being passed from one generation to another, how is wacky therapy (or even sensible therapy) going to change that?
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Presumably in exactly the same way as tablets don't upgrade their processors and memory to compensate for operating system "upgrades", or giraffes don't spontaneously turn into polar bears when winter comes.

When will these people understand the difference between hardware and software?

ETA - I know biology is a bit more 'intertwined' than that, but...they seem to think everything, literally everything, is controlled by the mind i.e. software, and that the underlying biology i.e. hardware, is irrelevant.

As far as I know in almost, if not, all cases where scientific type studies have been done it's been shown that the biology controls and directs the mind, not the other way round.

This is as you I would expect, the hardwares been around a lot longer than the current version of the software, so, in order for it to survive, it has to have the edge, priority wise.
 
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I think this is the problem with loose poorly structured hypothesis. Naviaux’s hibernation paper leaves things so open that it’s easily psychobabbleable by these loons who want to market their own form of tripe. His latest paper is no different, in fact he’s actually put “healing” in it.

I think we should prepare ourselves for more of this type of fake science marketing, so I for one would like the proper scientists to make sure their papers are written in a more disciplined way with this in mind.

Note: after reading Naviaux’s last paper I may be giving him more credit than is due. I dislike woolly conjecture dressed up as science, so in that respect Mead and Naviaux are really in the same camp
 
I wonder if my cognitive problems could be put down to the guillotine? An increased spatial displacement of a few feet between the head and body of one of my ancestors, coupled with a temporal displacement of a couple of hundred years, might lead to a genetic predisposition to slow down processing a bit
 
Results: Of the 93 391 study persons, 45 955 (49.2%) were women and 47 436 (50.8) were men; mean (SD) age in 2012 among survivors was 45.4 (6.58) years. Female offspring of mothers evacuated to Sweden during childhood had an elevated risk of psychiatric hospitalization (hazard ratio for any type of psychiatric disorder: 2.04 [95% CI, 1.04-4.01]; hazard ratio for mood disorder: 4.68 [95% CI, 1.92-11.42]). There was no excess risk of being hospitalized for a psychiatric disorder among women whose fathers were exposed to the Finnish evacuation policy during World War II or among men whose mothers or fathers were exposed.
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I'm immediately suspicious of the results of this study, because they immediately break them down by gender without stating up-front that gender and gender interactions are likely to be important. My suspicion is that there were no overall effects, so they went fishing by comparing different parent-child gender combinations.

Oh, and what @Sarah said. Not at all relevant to genes and epigenetics. Its nothing to do with that.

I get an overwhelming sense here that the research question asked should simply never have been asked. Its just a cute idea, and not ready for testing until you can at least come up with a reasonable theoretical model as to what one might expect to see, what mechanisms are at play, and how that might be affected by other relevant factors (which, by the way, are NOT just gender, but also socioeconomic class and a hundred others). Its just a waste of time and money.
 
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