5 emotions which turn into Chronic fatigue.

[Snow Leopard]

5 emotions after watching that video:

indignation
disgust
frustration
confusion
contempt

 

[JaimeS]

The only possible motivation for this is their personal profit.

Or a genuine desire to be saviors. Not that this is especially ethical, either.

 

[Woolie]

For instance, while I don't believe stress causes this family of diseases, I do believe, for some, it can be part of the soup that triggered their illness.

I find this idea of "stress" playing a role in our disease problematic.

First of all, its all retrospective. So in the period leading up to the onset of illness, we're likely to actively search for causal factors, so are more likely to remember any stresses occuring then - more than we would, say, two years previously when we were actually much more stressed (and didn't get ill).

Second, there may be a slow lead-up phase prior to the onset of recognisable illness that affects our performance and makes us feel extra tired and overworked in that period. That could later be interpreted as stress precipitating the illness.

But third, and most importantly, stress is a label you can apply to any set of conditions you want that have a negative element. So unless you were living on buddhist retreat at the time of your illness, then you were no doubt under some sort of stress.

I would be really happy if we got rid of the whole concept of "stress" . Its so unhelpful, and leads to so much loose and sloppy thinking, some of which is dangerous.

 

[JaimeS]

there may be a slow lead-up phase prior to the onset of recognisable illness that affects our performance and makes us feel extra tired and overworked in that period. That could later be interpreted as stress precipitating the illness.

Not one that I had considered, but highly likely.

 

[alex3619]

There has been some discussion over the years about patients being unwell long before getting ME or CFS. I think that anyone who has staged onset is also in this group. The problem is the attribution of stress, as @Woolie says. If we said miasma, or evil humors it would not be much different in meaning if the concept of stress is not adequately defined.

 

[Effi]

Second, there may be a slow lead-up phase prior to the onset of recognisable illness that affects our performance and makes us feel extra tired and overworked in that period. That could later be interpreted as stress precipitating the illness.

This is very much my experience. It is easy to say stress is what caused the illness, but in fact it is our being sick that is causing us to be unable to handle a normal (healthy!) amount of stress. Blame the illness, not the patient.

 

[TiredSam]

If we said miasma, or evil humors it would not be much different in meaning if the concept of stress is not adequately defined.

I have long suffered from evil humors.

 

[tinacarroll27]

So unless you were living on buddhist retreat at the time of your illness, then you were no doubt under some sort of stress.

Ironically I am a practicing Buddhist and I was meditating every day before I took ill and yet I still took ill. Even if you did have a lot of stress before your illness started, it doesn't mean that was the cause; I may have bought a new pair of shoes before I took ill but that doesn't mean the shoes made me ill. These people are making some pretty poor logical assumptions!! A leads to B under all circumstances?? Not really!!

 

[Techs]

This is very much my experience. It is easy to say stress is what caused the illness, but in fact it is our being sick that is causing us to be unable to handle a normal (healthy!) amount of stress.

Not to be argumentative, but note that when stress is mentioned as a possible trigger for susceptible people, the idea quickly gets reduced to simple causation, which is not the same thing at all. And blame is not an interest of mine at all; as I've said, my stress was severe, situational, and unavoidable. While I'm interested in the role it might have played, no part of me blames myself for my psychological reactions to my environmental conditions.

Just curious: recently PTSD has been declared a physiological syndrome -- not merely psychological. Do you (or others) feel any affinity toward people suffering from PTSD? I do. But my bias (until evidence proves otherwise) has always been that there are many paths to quite similar physiological conditions.

 

[Effi]

Do you (or others) feel any affinity toward people suffering from PTSD?

I do feel like there is a certain overlap in symptoms between ME and PTSD (e.g. being easily startled by things that wouldn't have had that effect prior to the illness). But it's not because it looks partially similar that it is the same illness, or some sort of similar illness state. I'm sure we have overlaps with many well described illnesses too, like say cancer. But no one will ever say ME is the same as cancer, that it's just a different expression of the same thing. It's not cause two 'mysterious' illnesses that we don't understand yet have overlapping symptoms that they are the same thing. I agree that there are many paths to illness. But they ultimately all lead to the same thing: illness.

While I'm interested in the role it might have played, no part of me blames myself for my psychological reactions to my environmental conditions.

Psychological reactions or physiological reactions are the same in my book. They are never your fault. But still we get blamed for both. That needs to stop.

 

[pamojja]

Ironically I am a practicing Buddhist and I was meditating every day before I took ill and yet I still took ill.

2 years before a serious illness (introduced here) I had a very stressful job, where I knew from the beginning I had to reduce it to avoid burnout. Couldn't, therefore I had to quit and thought just avoided worse. Wrongly thought - a month later got my serious diagnosis

Never thought it the cause, but the proverbial 'straw that broke the camels back'. Ironically too why this would happen to me, because I actually had practiced in a Burmese forest monastery even for 2 years! However, that practice made it more easier for me to understand everything co-dependently conditioned. Biochemical reactions can become the cause for thoughts and emotions, thoughts and emotions the cause for biochemical reactions.

And in retrospect these 2 stressful years were filled with disadvantageous biochemistry: My first root canal, a mypericarditis, and a shistomasias. So indeed, maybe all these were co-factors for being less resilient, therefore more stressed, and finally coming down with chronic illness. Everything intricately interwoven, as it usually is.

Psychological reactions or physiological reactions are the same in my book. They are never your fault. But still we get blamed for both. That needs to stop.

My training in Buddhist meditation at least made it easier to let go of guilt, for physical or mental processes usually considered 'mine'.. In this practice one persistently sees everything perceived, felt, thought, reacted to and conscious of - as impermanent - therefore not really able to keep it's allure of lasting happiness - therefore deep down not really what could be considered mine, what I am, or my self.

Feelings can't be that easily stopped, but it is possible to not reinforce them with 'mine' at every occurrence, that allows them to unfold, with attention and equanimity. And pass again.


PS: Needless to say: hurtful feelings don't simply turn into CFS. Nor can their resolution be expected to lead to remission. But it sure helps being friendly to them, for being a bid more at ease.

 

[Techs]

Even if you did have a lot of stress before your illness started, it doesn't mean that was the cause; I may have bought a new pair of shoes before I took ill but that doesn't mean the shoes made me ill. These people are making some pretty poor logical assumptions!! A leads to B under all circumstances?? Not really!!

I've seen this sort of rebuttal many times, especially when the topic of stress-as-trigger comes up. But I really don't understand it. Maybe I'm missing something.

The charge is that I'm guilty of poor logic for wondering whether my stress may have triggered my illness (which, again, is not to suggest pure causation -- just that stress may have been one factor in the manifestation of an illness that I had some predisposition toward). Nowhere have I seen anyone suggest that "A leads to B under all circumstances," but what confuses me most is that my logic directly parallels the logic of other etiological investigations. Yet I see no one belittling,say, viral-causation theories with the charge that not everyone who gets a certain virus becomes sick with ME. Or, for that matter, I don't hear people diminishing the significance of PTSD by saying that not everyone who goes to war becomes debilitated by it.

Something about the notion that stress may play some role in some people really seems to annoy the hell out of a lot of us. I don't quite get it. For me it's just about the investigation, not about the possibility that someone may get the wrong impression. (People already get the wrong impression all the time; that's a separate battle.) Maybe someday researchers will be able to convincingly delineate a specific disease called ME caused by a specific retrovirus (like with AIDS/HIV), but, for now, a lot of us struggling with pretty similar symptoms are still in the same boat, sharing the same internet forums, trying to achieve better understanding of our particular conditions.

It seems to me that your body and mine may be physically broken in very similar ways -- and perhaps, theoretically, could even be cured in similar ways -- even if our triggers to illness were totally different. No?

 

[Effi]

Something about the notion that stress may play some role in some people really seems to annoy the hell out of a lot of us.

I think I understand what you mean. The thing is though, that 'stress' is a very bendable concept. Some researchers say 'stress' when they mean a virus, being exposed to a toxic agent, or some physical trauma like a bad car accident. But the word stress is also a wastebasket word used for 'any life event negative or positive that some weaklings just can't handle'. I think that is the concept of 'stress' that we get annoyed at, because that is where the blame game begins.

Say you had a successful career before you got sick. A highly demanding job, but you loved what you did, and you were good at it. Then suddenly you get sick. But no one understands what you have, because this whole illness is basically one big question mark. So they'll say 'stress' caused it. 'You probably worked too hard', 'you probably had a bad childhood', 'you're probably missing something in your life so you tried to even it out by working all the time' - even if none of that is true; they will make it true, because they are saying so. I think most of us have heard this bogus answer more than once and have felt it for what it is: a way to brush you off and get rid of you as a patient.

I am not saying that it is impossible for someone to get sick from working too hard, I'm just saying that we shouldn't accept it as an answer if we know it doesn't apply to our specific situation. It is very abusive for someone in a position of authority to try to convince you that you have brought a horrible disease that has wrecked your entire life upon yourself, just because they can't handle not having all the answers. I think the reaction many of us have towards the word 'stress' as a cause for ME stems from those experiences.

For some too awful to be true (but sadly really true!) examples of doctors' behavior towards ME patients, you can take a look at this thread: http://forums.phoenixrising.me/inde...irdest-thing-a-doctor-ever-said-to-you.39282/

 

[Valentijn]

Something about the notion that stress may play some role in some people really seems to annoy the hell out of a lot of us.

It's contradicted by prospective studies. Basically a lot of people go through stress or trauma, and there's no increased likelihood that they'll develop ME/CFS. If there was a predisposition to a stress trigger, it would still show up in such studies, but it doesn't so it's extremely unlikely that there is one.

So stress prior to your illness was coincidence, and not causative. That doesn't undermine the validity of your stress in any way. It's just what the science shows us about ME/CFS.

 

[pamojja]

It's contradicted by prospective studies. Basically a lot of people go through stress or trauma, and there's no increased likelihood that they'll develop ME/CFS..

Interesting, so these prospective studies have been replicated? How stress or trauma has been defined? How long did these studies last and with how many participants? Would you have links at hand?

Thanks.

 

[JaimeS]

Ironically I am a practicing Buddhist and I was meditating every day before I took ill and yet I still took ill.

The average person seems almost ticked off that before onset, I ate good, wholesome food, exercised regularly, and meditated on a non-consistent basis. There should be some reason this happened, dagnabbit, you can almost hear them thinking. There should be something I can pin this on!

I do feel like there is a certain overlap in symptoms between ME and PTSD (e.g. being easily startled by things that wouldn't have had that effect prior to the illness). But it's not because it looks partially similar that it is the same illness, or some sort of similar illness state.

Studies used varying definition of GWI, sometimes including diagnoses of chronic fatigue syndrome, post-traumatic stress disorder (PTSD), inflammatory bowel disease, and multiple chemical sensitivity syndrome.
From here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4530672/

GWI shares some features with ME/CFS: Klimas's group studies both and finds a lot in common. PTSD is not GWI per se, but they also share some features. Things that don't seem 'incidentally' similar but essentially similar.

I think most of us have heard this bogus answer more than once and have felt it for what it is: a way to brush you off...

It is very abusive for someone in a position of authority to try to convince you that you have brought a horrible disease that has wrecked your entire life upon yourself, just because they can't handle not having all the answers.

This is very well-put, @Effi. If I could 'Like' 10 times I could patiently keep clicking that button.

'Stress' is a flexible concept and that means you can call anything you like 'stressful'. Whether something has been stressful or not is also a value-judgement, both on the event and the person it happened to, and is unlikely to bear fruit IMO.

Everyone has had a 'stressful life event' by age 30. (Good thread in general to connect to this one.) Suppose an emotional stressor did send you into overt ME. It seems strange to presume it's causative rather than the straw that broke the camel's back. (Probably just the comment should connect to this one.)

J

 

[alex3619]

I have long suffered from evil humors.

[Satire] I think psychobabble does it for me. I wonder if Master Galen would think I have an excess of bile or blood or phlegm? Maybe I should be seeing a blood letter, if the diagnosis is excess blood. Or get a transfusion, if I have insufficient blood. Anybody have any pet leaches?

 

[Woolie]

Ironically I am a practicing Buddhist and I was meditating every day before I took ill and yet I still took ill.

That is painfully ironic, @tinacarroll27.

 

[Woolie]

Not to be argumentative,

Not at all, @Techs. It would be a boring thread if we all agreed!

I don't mean to say that anyone who identifies stress in their onset has poor logic. Perhaps you really were under unusual stress. And perhaps that really was a contributing factor in your case.

My point is, if stress really is a common factor contributing to the onset of this illness, then we need to establish that objectively. How would we define "stress" in a way that could allow us to then examine a cohort of PwMEs and some controls, and observe whether the events we predefined really were more common in the first group than the last group?

Or does the nature of the concept "stress" not allow us to predefine what events could count (because its all about the subjective response). Then I say we are looking at a useless concept.

 

[Woolie]

Something about the notion that stress may play some role in some people really seems to annoy the hell out of a lot of us. I don't quite get it.

I also think its about the way this word is used in the context of our illness. Its used as a segue into psychological accounts. It is used by the psychosocial theorists as an incontrovertible argument for psychological causation - incontrovertible because it cannot be tested and therefore falsified. I am not okay with this.

Nobody seems interested in going about saying MS or Rheumatoid illness or Lupus are associated with stressful events at their onset. Why not? Because these are recognised illnesses, so there's no motive to paint a psychological picture.

Edit: I corrected ME to MS (it was meant to be MS).