My Chronic Fatigue Recovery Story

[WoolPippi]

How solid is the evidence that emotional problems lead to the development of chronic health conditions?

you are interpreting things a bit too broad and too harsh. For example you interpret psychological habits as "emotional problems" or you assume that somebody here is alluding that people are to blame for how they feel or that psychological health induces ME.
Nobody is saying you can think/feel yourself ill.

If you are willing to suspend judgements for a moment I can address a few things that might offer an approach that connects psychological things with bodily things and ME:
Stress is a killer in the body. This can be physical stress (mitochondria in need) or emotional stress. Dr. Selye did some solid research on that. The body doesn't care much where the stress originates from. This is not to say emotional problems cause ME, it is to say that emotional hygiene will influence the bodily stress system. And the stress system is closely related to ME (but not the cause of it)

Once the stress system is activated it is self perpetuating (sorry, spelling. I'm not English)
dr. Gupta explains a bit about this and how one can stop this cycle. Unfortunately he uses NLP techniques so it might come across as psychobabble. But the medical theory behind it is solid. And it worked for me, overnight (anecdotal evidence, I know)
Again, he is also not saying emotions cause ME. Fuck positive gurus.

Physical stress is something all people with ME have, wether they themselves feel stressed or not. We have lots of cells with problems, either caused by DNA mutations or because they got overwhelmed because of exo-organisms or after years of not being able to shed their toxins properly. Or just from having too low blood pressure so that the nutritinious elements do not get pushed into the tissues in which the cells reside (what did we think blood pressure is for anyway? It has a function. It pushed things into tissues.)

(On the other side of the tissue lymphe is waiting to receive the discarded stuff and carry it away. It needs to go to the garbage men made from bile. You only get bile if your stomach acid is sour enough. Cortisol determines how acid your stomach is. Overstressed = low cortisol. Garbage men on strike. Body fills with waste and toxins.)
(Not moving? lymph will just lie there, stewing with its garbage. You'll feel awfull. But you can't move 'cause ME. Try and yawn a bit. Stretch like a lazy cat. It will move your lymph. You need to get rid of the toxic stew.)

Stress will influence all kinds of bodily processes, including cell processes. This is because of cortisol, hystamine and the lot are secondary messengers in the cell. The very stuff we talk about in the threads about trying to cure ME insomnia with drugs, Yashko supplements and all the mB12 protocols. This is all about cell processes.
When the body experiences stress it messes up these very processes that we need to heal or maintain some level of health. Or energy. Processes that are already under strain because of the causes of ME.

It is my view that ME has to do with overwhelming of the body. Be it from a virus or bacteria or from decades of toxins or constant tension. (that last one is perpetual Fight or Flight response in my book. Pretty much how AspergerExperts.com explains the Aspergers' experience of the world: a constant bombardment and perpetual treat. Not some tension that a massage or some bath salt can help with)
Somehow the body's ability to counter these things is flawed. Either by DNA damage or some other unknown factor.

Getting rid of the stressor (virus, bacteria, toxins, tension) might bring relief. But not health. For that the body's flawed robustness needs to be repaired. I don't know if that's possible for everyone. Or for anyone.
It's my unfounded guess that people who are young or have not been ill long have still some of that robustness and therefore are able to regain more health once they get rid of whatever caused their body to become overwhelmed.

Other people, like myself, have some serious damage. Still, I soared from 45% health to 75% practically overnight when I did the "get your emotions in check thing". Because it stopped the bodily stress response. Ain't no psychobabble. Fuck CBT. It's cold clinical neurological theory. With anecdotical evidence.

I don't think I'll get more better than this. And I need to keep all the other things in check: cater to my specific DNA mutations; supplement hormones I lack; aid my adrenals; have a specific diet; take plenty of rest; send buckets and one way tickets to draining people.
Well, you know the list of all the things we're supposed to do right. But it's always a very personally tailored list. Can't say broad things about it.

But I can tell that after a life time of being in Fight or Flight and reading a lot about stress system, nervous systems, neuro transmitters, cell membrane processes, hormones and whatnot I can make a scientific case for emotional habits influencing ME and vice versa.

Well. You are all welcome to shake and rattle this post. I'm afraid I cannot explain myself more clearly and I expect to get critisized on particular words and expressions I use. That's a pity because I'd rather converse about the theories that lie behind it. They probably do not differ from everything all the other posters here think.

And nobody said you can think or feel yourself ill.

 

[Cheshire]

Negative emotions release cytokines which in turn cause an uptick in inflammation.
"There is significant evidence showing that certain cytokines/chemokines are involved in not only the initiation but also the persistence of pathologic pain by directly activating nociceptive sensory neurons. Certain inflammatory cytokines are also involved in nerve-injury/inflammation-induced central sensitization, and are related to the development of contralateral hyperalgesia/allodynia."
Jun-Ming Zhang, MSc, MD and Jianxiong An, MSc, MD

To add to A.B. and Adreno’s posts to which I strongly adhere, I would add: in what way does your quote prove a link between emotions and cytokine??



Thanks very much for sharing your testimony @justy, it's not easy to look back to one's life with such lucidity.

 

[A.B.]

@WoolPippi I only want to respond to one point you have made:

But I can tell that after a life time of being in Fight or Flight and reading a lot about stress system, nervous systems, neuro transmitters, cell membrane processes, hormones and whatnot I can make a scientific case for emotional habits influencing ME and vice versa.

The hypothesis that CFS is caused by an overactive sympathetic nervous system (ie. the fight or flight response) was tested and didn't pass. Regardless of what makes the SNS activity go up (stress of all types), reducing it generally makes patients worse. One would think that the SNS activity serves a purpose.

http://www.cortjohnson.org/blog/201...onidine-trial-chronic-fatigue-syndrome-fails/

 

[JAM]

@WoolPippi I only want to respond to one point you have made:



The hypothesis that CFS is caused by an overactive sympathetic nervous system (ie. the fight or flight response) was tested and didn't pass. Regardless of what makes the SNS activity go up (stress of all types), reducing it generally makes patients worse. One would think that the SNS activity serves a purpose.

http://www.cortjohnson.org/blog/201...onidine-trial-chronic-fatigue-syndrome-fails/

Maybe it is the pathogens attacking our nervous systems?

I was supposed to be studying, but wrote my post instead - I'll study tomorrow instead. Thanks for being so understanding. Took a bit of courage to own up, but I hope my experience may help others...

Thank you for sharing your story. Mine is quite similar and there is a strange comfort in similarity. I also trained in alternative therapies, massage, meditation, tai chi, and personal training, but as a way to find what was wrong and cope with the pain. I never bought into the thinking I had caused it, but was told by many people that I trained with that I was "choosing" to be ill. They made me question myself a lot. On the flip side, many of the things I did helped me cope with the illness. I wish people would separate the woo from what these therapies can do, and not use them as a tool of judgement.

 

[WoolPippi]

@WoolPippi The hypothesis that CFS is caused by an overactive sympathetic nervous system
/

thank you. I'm not saying it is. It contributes to prolongating ME and hinders the body to deal with things on its own.

 

[Snow Leopard]

We each have our own set of experiences. I'm glad that a few are lucky enough to recover.

Many of us have tried all sorts of methods to recover. You do tend to try almost everything (that you can afford) when you really want to recover.

The overall experiences of those on this forum suggest that there doesn't seem to be any consistent treatment that works for most, or often, sadly even a few people.

My condition was initially relapse-remitting, I the first remission, I was convinced that homeopathy had cured me and that it was proof that homeopathy was true. Unfortunately it failed to work since then, despite much trying. I was still a teenager, and my mother was open minded with regards to alternative health, so I tried all sorts of things, but with no success.

That is why I am still searching for a deeper explanation.

 

[melamine]

Advocating psychotherapy for illness is irresponsible and potentially harmful... Patients who erroneously believe they have CFS, or who erroneously believe that psychotherapy led to their recovery are doing the rest a disservice by spreading these views.

Promoting a placebo therapy is unethical.

How solid is the evidence that emotional problems lead to the development of chronic health conditions? Psych research is typically of poor quality, with correlations mistaken for causation.

... and people who claim psychotherapy works are not helping.

@A.B. - I am not "advocating" or "promoting" anything here, least of all "psycho"-therapy, or that positive thinking will "cure" illness. Nor do I consider my opinions "irresponsible and potentially harmful." Maybe you're mistaking my distaste for certain other brands of Kool-Aid as a preference for another. However, I don't believe either, that people who recover are doing anyone a disservice by describing their interpretation of their experience, because the power to do that is not in their hands.

As far as ACEs, I do not feel obliged nor do I have the energy to educate you or anyone on the research. Those who are interested enough will search out the legitimate research on it for themselves, but some of your assumptions are just that, and they are off-base.

>The greatest obstacle to knowledge is not ignorance; it is the illusion of knowledge. Daniel J. Boorstin <

I have suffered as much mistreatment, misdiagnosis and neglect as anyone here, since first becoming ill in 1979. It has cost me greatly financially as well. I am merely expressing my opinions here, which I hardly consider dangerous. I cannot control how they are imaginatively transformed, misinterpreted or mis-categorized.

 

[melamine]

.

@WoolPippi - Thank you for expressing better what I basically believe, and for sharing your experiences. Glad you are doing better now.

 

[A.B.]

thank you. I'm not saying it is. It contributes to prolongating ME and hinders the body to deal with things on its own.

Reducing SNS activity makes ME/CFS worse according to the study. The SNS activity is not maladaptive.

As far as ACEs, I do not feel obliged nor do I have the energy to educate you or anyone on the research. Those who are interested enough will search out the legitimate research on it for themselves, but some of your assumptions are just that, and they are off-base.

You said that research on this appears solid to you. Which research? I would like to see it. And I'll openly admit that I'm not expecting much. That's all. If you want the discussion to stop here that's fine but I don't think it will strengthen your position.

 

[chipmunk1]

mind over matter is a scam.

 

[melamine]

You said that research on this appears solid to you. Which research? I would like to see it. And I'll openly admit that I'm not expecting much. That's all. If you want the discussion to stop here that's fine but I don't think it will strengthen your position.[/QUOTE]

@ A.B.- Expectations are a funny thing...

I have no "position" to promote here, only offering my opinion. I think readers of pr are smart enough to sort the different ones out for themselves.

Information on the main US ACE study can be found here:
http://www.acestudy.org/
http://www.ajpmonline.org/article/S0749-3797(98)00017-8/pdf

Links to some others can be found among References at the end of this article:
http://en.wikipedia.org/wiki/Adverse_Childhood_Experiences_Study

 

[A.B.]

@ A.B.- Expectations are a funny thing...

I have no "position" to promote here, only offering my opinion. I think readers of pr are smart enough to sort the different ones out for themselves.

Information on the main US ACE study can be found here:
http://www.acestudy.org/
http://www.ajpmonline.org/article/S0749-3797(98)00017-8/pdf

Links to some others can be found among References at the end of this article:
http://en.wikipedia.org/wiki/Adverse_Childhood_Experiences_Study

Thanks. This is more interesting than I had anticipated, though I would like to read some critical responses to it as well before making up my mind. I note that Freudian ideas of repressed childhood trauma feature prominently, which is problematic because suggestion can lead to false positives. It's also a retrospective study which has similar problems. Most of these diseases also seem to come from health risk behaviour such as smoking, drug abuse, promiscuity, excessive eating, alcoholism, and so on. The question here is whether these patients are also at risk for these conditions if they don't engage in the relevant risk behaviour.

It also doesn't support the claim that psychotherapy can cure illness. And I'm not quite sure what CFS has got to do with it. The authors seem to view CFS as somatoform disorder.

@Valentijn had something to say about prospective vs retrospective studies. Maybe she wants to add something?

 

[Snowdrop]

I personally have no doubt that @ChronicFatigueSurvivor had all our best interests at heart in sharing what has worked for her in terms of healing. Unfortunately, the whole area of psychological treatment is fraught with problems. What each of us refer to when we discuss these issues can be nebulous or difficult to be precise about and the nature of proof can never meet the more rigorous demands of what can be considered scientific proof.

Yet there remain tantalising threads of ideas that just seem right.
In my opinion from my life experience I would say it is fair to state that ACE's can have an impact on a persons health.
And I said 'can' not 'do'. There seems to me so many more variables with regard to assessing this than any study can reasonably handle.

Each person is born with some combination of biochemistry/genes that puts them on the spectrum of resilience.
This can't be known directly but it certainly would impact how the person responds to ACE events.
Also, one single person in a vulnerable child's life can have a positive and protective impact that can mitigate some of the damage.
The earlier the intervention the better the later the more 'intense' the positive interaction has to be.
There is always the issue of simple luck where random events later impact lives already vulnerable to stress.

What I'm saying here is that the scales used in the ACE assessment are over simplistic and cannot be used to accurately determine what they are trying to assess. It's understandable that they would want to try. I personally doubt that our relationship to and interaction with our social environment will ever be truly amenable to discreet data analysis.

And I suspect that psychological interventions can in some cases provide some level of help with coping with an illness even as the ACE's may have caused vulnerable people to deteriorate more (possibly) than they might have otherwise.

I hope this has not put Chronic Fatigue Survivor off from engaging with this forum. There is still plenty here in the way of useful information for a whole host of health issues. But it's important for the ME community to be clear as to what the illness that is the title of this forum is because of so much misinformation spread by medical factions that should know better.

 

[melamine]

@ A.B. - Anything to do with Freud and suppressed anger = really turns me off. It was one reason I found Sarno's book offensive. I came to the subject by way of another book, The Last Best Cure, by Donna Jackson Nakazawa, who wrote The Autoimmune Epidemic before that, which I had read. She was participating in a study at Johns Hopkins at the time she was writing the second book, to measure immune function and similar markers as they might or might not be affected by therapies of a "non-medical" kind, which she described. Her personal experience was not "one of the usual suspects" of obvious childhood sexual or physical abuse.

What impressed me with this new study is that it is purposely being very inclusive in its definition of (degrees of) ACE, widening the expected definition to include the grayer areas of benign neglect and emotionally traumatic events. My impression of the intent of the study is that it is factoring out things like bad habits and obvious reasons for poor health, but considering the development of the habits themselves to be as a result of ACEs. My impression of the field of study in general is that researchers are maybe even more interested in the less obvious forms of ACE, and ill health later that is not a result of bad habits, because a connection would be more confirmatory if it were found in that group.

I don't recall if I read their definition of a disease they call CFS and am not really interested in it anyway. I don't see that what they're doing has any intended connection to the Wessely school or definitions of CFS or anything of the sort. If their research methods are clean, I say let the chips fall where they may. I just don't see it posing a danger to funded research for CFS/ME, and can access to basic medical care for PWCFS/ME get any worse than it already is?

 

[melamine]

I personally have no doubt that @ChronicFatigueSurvivor .

What I'm saying here is that the scales used in the ACE assessment are over simplistic and cannot be used to accurately determine what they are trying to assess. It's understandable that they would want to try. I personally doubt that our relationship to and interaction with our social environment will ever be truly amenable to discreet data analysis.


@ Snowdrop - Well said, I almost entirely agree. I find studies such as these as interesting to think about as for their actual results, which will inevitably be questioned and refined and re-tested, as they should.

 

[A.B.]

What impressed me with this new study is that it is purposely being very inclusive in its definition of (degrees of) ACE, widening the expected definition to include the grayer areas of benign neglect and emotionally traumatic events. My impression of the intent of the study is that it is factoring out things like bad habits and obvious reasons for poor health, but considering the development of the habits themselves to be as a result of ACEs. My impression of the field of study in general is that researchers are maybe even more interested in the less obvious forms of ACE, and ill health later that is not a result of bad habits, because a connection would be more confirmatory if it were found in that group.

Broad definitions are vague definitions which leave more room for interpretation. This is not a good thing. What exactly is "emotional neglect", and when is it traumatic? This is a lot more vague than beating or sexual abuse. I'm not surprised to see a high rate of traumatic childhood experiences when the definition of traumatic childhood experiences includes things such as "emotional neglect" and the people being asked have some sort of health problems which can affect the way they perceive things.

I'm getting the distinct impression that the authors are very heavily into Freud, whose stories of curing illness supposedly caused by emotional issues with psychotherapy were shown to fabricated. He quite literally claimed that patients were well and healthy, when they actually had no improvement in health or had deteriorated.

 

[chipmunk1]

i think the whole psychosomatic illness stuff is just plain wrong. i am not sure how say it:

i will not even argue with studies or facts:

i think it is extremely unlikely that a person will remain disabled for decades (in pain) and unable to live life just because of some persistent negative thoughts or some moderately traumatic childhood experiences missing out the entire life despite wanting to live while not being aware of the psychological processes under the surface that are SO STRONG that they can kill all vitality yet SO SUBTLE that not even the sufferer is aware of them.Then maybe even deriving a personal gain from it that is so huge that it can make up for the other losses suffered.

 

[Seven7]

2013! Gosh I had 3 remissions in my first 5 years. So yeah I think is possible. I wish I was wiser then to understand this is (unitl cure is found) a long term thing so Be always aware and I would still do the inmune tests so you keep en eye on the important things so is long term. Good luck

 

[CFS_for_19_years]

@ChronicFatigueSurvivor, still waiting to hear the criteria that you and/or your doctor used to diagnose you with CFS/ME. I seriously doubt it's what you had. I don't doubt that you had fatigue - that's also known as TATT - tired all the time.

Show us you have some awareness of the criteria to diagnose CFS/ME that have already been mentioned in this thread.

I got five on it that you never had CFS/ME. For you to post that you did have CFS/ME, when all you had was "chronic fatigue" just wastes our time. But good for you that you're feeling better from something that was causing your fatigue.

 

[Valentijn]

@Valentijn had something to say about prospective vs retrospective studies. Maybe she wants to add something?

The whole area is a bit of a quackfest, so my interest is pretty limited. But basically sick people report greater incidence of past childhood trauma and such than healthy controls. Yet if you start with a large population of healthy people, determine rates of trauma, and then see who gets sick, rates of childhood trauma is the same in both groups.

The theory is that sick people spend more time going over past incidents to try to determine if there's a link with their current illness. Hence when asked about the past they will have already been thinking about it more, and have more to report.

It's called "recall bias" and is a pretty huge flaw with retrospective studies in general. Prospective studies are much more reliable, and if there's contradictory results between retrospective and prospective studies, recall bias is very likely to be the problem, and the retrospective study is probably the one producing flawed results.