5 emotions which turn into Chronic fatigue.

[pamojja]

Lumping all forms of stress, or even all forms of what our society lumps into the psychological stress category is not useful because it is a nonspecific predictor - whether the intent is to predict behaviour, emotions or other impacts on health.

For me stress is not a predictor for anything, other than understanding the circumstances which caused it, and that I feel much better without. Than there is the correlation of being stressed, sympathetic dominance and with feeling much worse than without stress in my repeated experience. Any further causation isn't reliably known. However, with cardiovascular-disease patients there is the conception of stress as the killer. Because of certain correlations (not proving causation again. For example, most heart-attacks occur on Monday mornings).

So being able to handle stress does correlate with well-being and predicts it pretty well, at least for me. That alone makes it worthwhile to pursue.

Actually, come to think of it, my grandma's still alive, and she's 95. Or do you have to be dead before you count as an ancestor? I'm not sure.

Every single one of my ancestors for the last million years has survived stress and everything else life had to throw at them at least until they managed to reproduce, otherwise I wouldn't be here.

We all count as ancestors after reproduction. The point is we all die, reproduced or not. And research points to particular damages - stressors - accumulated as the causes for the event we call death.

 

[pamojja]

@pamojja, in all seriousness, your wikipedia definition of stress is referring to physiological/biological stressors (such as viral infections, malnutrition or injury) and the way the body reacts to them. It has nothing at all to do with the kind of psychological or emotional "stress" you describe, so you are incorrectly extending the concept there. This is the very problem with the concept of stress, the two very different things get morphed together.

Why? It starts with the following sentence:

Physiological or biological stress is an organism's response to a stressor such as an environmental condition.

...such as an evironmental condition. That could mean to much time-restraint at work, or strain caused by a chronic disease as it was it described from my personal experience. In both cases it causes sympathetic dominance in me.

An other very unique experience with the 2 years at a stress-ful job (correlated also with physical stressors like a root-canal, mypericaditis and shistosomiasis) was that I would get angina-like chest-pain whenever particularly under mental or physiological stress. Interestingly found out that a 160mg daily dose of Ubiquinone (half that dose of Ubiquinol) would make these chest-pains go away. However with the not so nice side-effect, that nowadays the chest-pains would come back as soon dropping below that daily CoQ10 dose. Now also without obvious strong stressor around. Beside the stress of being chronically ill.

 

[Woolie]

Why? It starts with the following sentence:



...such as an evironmental condition. That could mean to much time-restraint at work, or strain caused by a chronic disease. In both cases it causes sympathetic dominance in me.

"Environment" in this context means things like infections (they are in the environment before they infect us), or heat, or lack of water and such.

 

[pamojja]

Both my definition of 'environmental condition' and my repeated personal experience of the physiological downward effects described there assure me of my understanding.

However, you of course have the right for an own, differing opinion. Why you think environmental wouldn't include any influence from the environment?

 

[TiredSam]

We all count as ancestors after reproduction. The point is we all die, reproduced or not. And research points to particular damages - stressors - accumulated as the causes for the event we call death.

All my ancestors did die, I'll grant you that. Not so sure about where the research points though. Or why "death" has become "the event we call death".

 

[pamojja]

Or why "death" has become "the event we call death".

Well, I said that tongue in check. As always in science there are conflicting hypothesis. But some scientists consider death not an inevitable event, but one day a curable disease. For example these guys:

http://www.sens.org/research/introduction-to-sens-research
http://www.sens.org/research/introduction-to-sens-research
Not that I would agree with all it's implication. But increasing health-span would be certainly beneficial.

 

[Techs]

You seem to be opposed to the idea that the concept of 'stress' as a trigger of disease leads to patient blaming. We certainly don't blame ourselves, but an important part of the medical community and government does use this concept as a reason to put the entire burden and responsibility on us patients. It turns our illness into a non issue. This directly leads to a lack of research, a lack of treatment, a lack of social support, and ultimately to overall neglect of very, very sick patients. This is real and it has been going on on a daily basis for decades. So yes, we are opposed to it. We are way past the point of wanting to cling onto something that might influence some people. We need real answers, now.

My sense is that your comment does a good job of distilling the main spirit behind the collective resistance to investigating "stress." So I think it's important to emphasize what @pamojja already pointed out: that the primary resistance is basically political.

My past life as a journalist perhaps predisposes me toward the pursuit of facts, regardless of political consequences. There's actually a hopeful ethic in that: even if certain facts initially cause turmoil, the journalist hopes the long-term commitment to the investigation will eventually bring about the greatest overall progress. (Obviously I'm describing an ideal, and not referring to Fox News.)

With that in mind, I want to add just a couple more things to the discussion, but then I'll let this topic go. My intent in bringing it up was not to make people uncomfortable. Clearly, this is a loaded issue. @JaimeS reminds us of the pain brought on by the PACE fiasco, Wessley's portrayals, and the pitfalls of personality-typing. But when I see nuanced arguments being reduced to caricature (e.g, as if mentioning stress is the same as saying it is 100% responsible for 100% of ME cases; or when someone else suggests the concept of stress is medically useless, when we all know it's highly relevant in certain medical conditions), the over-sensitivity (IMO) to the concept is confirmed. @Effi, I think you might even recognize some hyperbole in your paragraph above if you were to parse it again.

While feelings may be strong, the resultant politics are usually not so straightforward. Often there are unintended consequences, and that's the reason I commented in the first place. While I do think Kim Knight (the speaker) is naive and misguided (see my first post), I do not believe average viewers would see her as a malevolent "fraud" who doesn't care about anything other than making money. I think she comes across generally as a quite reasonable, empathetic person with experiences that she thinks might be helpful to others. I'll bet some viewers could probably see life benefits from her story. So to announce a call to arms here, advising people to go over there and fight, could have the unintended effect of making our community sound hysterical to average people. Whereas, if the topic were not so loaded, it would be much easier to go over there and actually enlighten Knight and her followers through civil discussion. There are simply some things she's ignorant about -- that's it. What good does it do to go there and call this woman's entire body of work "rubbish," "psychobabble," "utter nonsense," telling her she "should be ashamed," and instructing viewers to "believe this at your peril"?

I'm aware of the political struggles -- and I'm also aware that the political affects the personal. For years I've been unable to find a single doctor who will run any viral tests on me, because they think viral theories are silly, and, besides, everyone always tests positive, so what's the point? I doubt exposing such doctors to vitriolic certitude is going to get me my viral testing any sooner.

Finally, I offer a gentle reminder that we are all on our own distinct journeys. One commonality, however, is that we all know what it's like to have our perceptions routinely dismissed and diminished. So I'm sure everyone can relate to the feeling I get every time I describe (not only in this thread) my long period of chronic stress as unusually severe and unavoidable -- only to have people respond with "we all deal with stress," or "yeah, this disease can stress you out." (Sound familiar? "We all get tired...") Or when you say you "just don't see the point" of investigating stress narratives, or that you see my interest as "clinging" to abstractions, it can feel just as dismissive as when those doctors giggle at me for bringing up dead viruses.

I mention this only as a call for perspective. (I'm not pissed off.) Feeling dismissed goes with the territory; it's a peculiar aspect of our fate (not necessarily unique to us, but certainly we deal with it more than average). Some of you might feel dismissed by some things I've said. (After all, I did call Effi's claims hyperbolic. Ouch.)

Okay, I've said my peace. Moving on. Thanks for listening.

 

[JaimeS]

While I do think Kim Knight (the speaker) is naive and misguided (see my first post), I do not believe average viewers would see her as a malevolent "fraud" who doesn't care about anything other than making money.

Nor do I.

But when I see nuanced arguments being reduced to caricature (e.g, as if mentioning stress is the same as saying it is 100% responsible for 100% of ME cases; or when someone else suggests the concept of stress is medically useless, when we all know it's highly relevant in certain medical conditions), the over-sensitivity (IMO) to the concept is confirmed.

The point that I made was to demonstrate the uselessness of personality typing by demonstrating that CFS 'personality' has literally been defined as two opposite types. This is not hyperbole or strawmanning; I have read papers and heard commentary from researchers that depict patients as overachievers and as lazy individuals. I'm making the conscious decision not to cite here, because reading papers that dismiss CFS as a facet of the personality countered by right-thinking are upsetting to patients, and yet it's hard to resist clicking on them. I'm not sure how personality is a useful model if that model would tell us two opposite things about who we must be because of our illness. That means, scientifically, that the findings aren't repeatable.

Moreover, I don't believe personality is reliably diagnosable practitioner to practitioner, in the manner of a disease.

@JaimeS reminds us of the pain brought on by the PACE fiasco, Wessley's portrayals, and the pitfalls of personality-typing. But when I see nuanced arguments being reduced to caricature (e.g, as if mentioning stress is the same as saying it is 100% responsible for 100% of ME cases; or when someone else suggests the concept of stress is medically useless, when we all know it's highly relevant in certain medical conditions), the over-sensitivity (IMO) to the concept is confirmed

There are a few places where you seem to be indicating that our upset around this topic makes our point invalid -- i.e. we are upset, so you are right. We could be jumping up and down and crying while shouting that the sky is blue, but that doesn't mean it's actually orange. It's still blue, even if our anger or upset seems surprising to you, or out of place. Upset about a harmful narrative does not make the narrative correct.

So to announce a call to arms here, advising people to go over there and fight, could have the unintended effect of making our community sound hysterical to average people.

Once again, I don't think anyone should be marching over there shouting. Still, stating we'd be more accepted by others if we just were careful with how we express our upset is deeply troubling. I agree that we should not lash out at the wrong people for the wrong reasons, and we should never stoop to violence or language that promises violence. However, we have the right to be angry at the right people for the right reasons, and we have the right to express it in a safe manner: i.e. here on Phoenix Rising, as a community, where venting is sometimes helpful. I do encourage you to check out this comic regarding requests for people in a marginalized community to adjust their tone so that their grievances are easier for the public to swallow.

Or when you say you "just don't see the point" of investigating stress narratives

I just don't see the point for myself, and I don't see the point for the illness as a whole. Whether it is important to understanding your illness-onset is not something I can say, and is absolutely none of my business. I'm not here to tell you as a person that stress didn't play a role in your onset, or the onset of other patients. I honestly mean that.

When I say everyone has been under stress, I don't mean everyone has been under everyday, meaningless stress like a hangnail or a rough day at work. If you clicked on the link I added, the 'stresses' I discussed were divorce and death. Then I said that a long-term moderate stressor might have the same effect. Examples of that might be an untenable living situation, being out of work for an extended period, a dysfunctional workplace, or homelessness.

Yet only some of us develop the illness, while stress -- even severe stress -- happens to everyone. Therefore, we need to search for the genetic or environmental differences between us and others in order to better understand why this happens to some.

This is quite off-topic from the original idea, which was to discuss the idea of emotion "turning into" ME/CFS. This is a topic that might be better suited for the private forums if it's to continue.

-J

 

[JaimeS]

There is an immense peer-pressure here not to look under every possible contribution to the disease with this irrational hope medical science would solve it one day

That's amazing. What I was struck by the first time I came here was the relentless pursuit of knowledge on PR: the way everyone was analyzing every study, trying every drug, discussing, debating. There are those who have worked their way up to better health through relentless and empirical experimentation. There are several who have gone into medical research to work on this illness. I'm also thinking about Fredd's protocol and Hip's treatment roadmap. I wonder why you're having such a different experience.

Spend a little more time here.

This thread is getting kind of toxic, so I think this will be my last comment here.

You seem to be implying that all patients are so ego-driven, so incapable of admitting any flaw, that they refuse to accept that emotional stress -- or an abnormal stress response -- could ever play any role in their illness. Or perhaps that they are so flailingly helpless (as per above) that you don't find them capable of acting on their own behalf.

Talk to anyone here -- or tool around awhile longer -- and you'll find what the average patient has tried. So much in the alternative modalities: meditation, anti-anxiety drugs, SSRIs, MAOI inhibitors, yoga, deep breathing. CBT for those false illness beliefs. GET for the deconditioning. Prayer.

But they're still sick. Or sicker, often.

Emotional stress isn't an unexplored corner into which patients are afraid to peer. At least with the treatments that are available so far, it's a blind alley with a dead end.

-J

 

[Snow Leopard]

There is an immense peer-pressure here not to look under every possible contribution to the disease with this irrational hope medical science would solve it one day, as I never have experienced in communities of other non-treatable diseases.

I find this comment... Interesting.

Some of us read all the literature we can get our hands on (some of us also have science/math degrees and even PhDs). I have personally read hundreds of studies on attempting to measure or model the psychological and social aspects of this illness. I dare say this is true of others - the people we see positing studies up on the forum for example.

This may seem strange to those who have not read more than a thousand peer reviewed papers, but the more you read, the more sceptical you become of single studies (or clusters). The more studies you read, the more you get a feel for which studies are likely to be biased and which are likely to be replicated. Unless the methodology is of the highest standard (prospective studies, population based studies, using both high quality physiological and high quality self report measures in the same study), it is difficult to have high confidence.

You may have noticed that some of us apply the same high standards and thus scepticism of certain biological claims too - due to a similar lack of evidence. I personally question all the hypotheses involving long term viral infection, I think "Chronic Lyme disease" is not due to chronic Borreliosis infection. Most of the neuroendocrinology findings eg "low cortisol" aren't important, or lack evidence for a convincing model. I don't believe the NK Cell activity findings are important due to lack of direct association with symptoms, none of the genetic SNP associations so far have been statistically significant (eg the studies didn't apply the correct statistical procedures) due to multiple comparisons etc. I am also confused by most brain imaging studies as I have no idea how it relates to either symptoms or treatment. I will say however, the evidence I have found the studies conducted by exercise physiologists the most compelling - those who delve deeper and try to figure out why patients can't perform as expected.

Learning to sort the wheat from the chaff takes time and the only way it is learned is by reading hundreds of studies across fields, learning about best practises, learning basic statistics, learning all of the potential methodological difficulties and then asking yourself while reading a particular study, "is this best practise", "how could this study be biased and have they attempted to control for that". Sadly, for many psychological studies into CFS and ME, the answer to those questions is no. It might be due to lack of funding or whatever, but at the end of the day it means that since best practises were not used, since there is a high risk of bias, that well, it is most reasonable to be sceptical until high quality evidence comes forth.

Lastly, I have to say that I like being surprised - this is why I keep diving back into the literature, occasionally I find research that is both novel and of very high quality, such that I am able to amend my view.

 

[TiredSam]

I do encourage you to check out this comic regarding requests for people in a marginalized community to adjust their tone so that their grievances are easier for the public to swallow.

I did enjoy that comic, having frequently been the subject (I won't say "victim" in case I'm accused of shrill self-dramatising) of tone policing myself.

 

[Woolie]

@Techs, @pamojja, you've hit all the hard-nosed critical analysts on this thread. But there are loads of parts of PR where you can further discuss things like stress, emotions and mind-body connections with more like-minded people. Check out the Alternative Therapies and the ME and Spirituality sections in particular.

 

[AndyPR]

There is an immense peer-pressure here not to look under every possible contribution to the disease with this irrational hope medical science would solve it one day, as I never have experienced in communities of other non-treatable diseases.

Sorry, I'm trying to follow the logic here. So we are being irrational in believing that rational scientific methods will provide the answers, as they have for every illness that has been properly investigated, and instead we would be behaving rationally by investigating irrational ideas, which have always been overtaken by rational scientific medical science.

Given the increasing weight of biomedical science about ME, I certainly see no reason to take a detour back into psychological "explanations", where this illness has languished for the last 25 years+

 

[Leopardtail]

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.

I agree entirely, in the months before I became ill, life was stressful only because the ME was incapacitating me and I could not cope with normal life. There is too much chicken and egg involed in any such assumption / conclusion and it will remain so until we have a biormarker and can identify patients before the illness creates the stress.

 

[Leopardtail]

I'm new to the forum and this is one thing I probably wont become accustomed to here. Just have overcome a kind of CVD, the physical disease most of us will die from (second is cancer). And to that end participated in a health forum (TrackYourPlaque) where not one stone has been left unturned, or considered a tabu, as emotional contributors are here. Because despite a century and having invested billions of research, it's many biochemical contributing factors basically understood. - There still isn't any tteatment with much more an effect than a 1% reduction in 5 year mortality rate!!!

My experience in remission of a by medicine standards non-reversible and mercilessly progressing disease - without anything pharmaceutical industry was able to come up with - with in comparison almost endless funding and a century of research - leaves me flabbergasted why almost everyone here puts every hope into it.

I understand the political unfortunate implications. But that happens to every patients of non-reversible major diseases, who isn't satisfied with the best treatment conventional medicine came up with: a mere 1-3% reduction of 5 year mortality. Each of them will be on their own without better treatment available - just as it is with ME/CFS too.

There is an immense peer-pressure here not to look under every possible contribution to the disease with this irrational hope medical science would solve it one day, as I never have experienced in communities of other non-treatable diseases. It's so unfortunate, because if I wouldn't have looked under every possible contribution to my form of CVD, how likely could it have gone into remission?

This comment indicates that you are unware of the context. The psychological explainations have been looked at many thousands of times to the exclusion of all other causes for decades. The psyhologists behind this claptrap used faulty selection criteria that excluded real ME patients and includced patients with purely psychological illness.

The resulting treatments have done what appears to be irreperable harm to the health of patients. The faulty model has also caused us to be denied much needed treatments to manage our oncidtions, denied us access of to social security for quite some time, and denied us access to social services assistance where needed.

The stone has been turned over many thousands of times and done nothing but harm. Most of us have our own views what might be causing that disease and I think most of us are open to ANY physical explanation that makes any sense. The type of view expounded in this video has done us severe harm, it continues to cause me to be denied treatment I am proven to need - I will put up with no more of it, and we are well founded in feeling the same.

 

[pamojja]

Thanks for everyone giving their point of view and taking the time for thoughtful responses. I think everything has already been said.

, it continues to cause me to be denied treatment I am proven to need -

I could only repeat that I was denied treatment I am proven to need with my CVD too - as most, who invariably die from it. Despite a century of research and billions of funds, no treatment was found. Just a 1% reduction in 5-year mortality..

There are several who have gone into medical research to work on this illness. I'm also thinking about Fredd's protocol and Hip's treatment roadmap. I wonder why you're having such a different experience.

Well, my disappointment with available treatments with CVD made me look for alternatives. I ended up with a treatment with loads of anecdotal evidence since many decades, but no research which ever trialled it. It helped in my case too (reversal of a government certified 60% disability). But thereby I also had to learn, that the reason no serious trial was ever made was, because it involves non-patentable compounds. Where none would ever waste the millions for getting it approved as a drug for treatment of that disease. That's how our medical system works, by profits, sadly. And cheap remedies will therefore never be approved for treatment.

Therefore, when I came to PR I went straight to the anecdotal evidence about available alternative treatments here. Being convinced of their effectiveness compared to patented compounds through my own experience with CVD.

http://forums.phoenixrising.me/index.php?threads/am-i-right-here.50197/

One has to read only 3 threads of remission-stories here on PhoenixRising, to understand that that kind of opposition to such stories is very prevalent to almost all remission stories. And not really surprising, such story-tellers gone already after a few posts again. A kind of self-selection going on. I therefore kept my inquiry to my introduction thread, to attract not too much of that.

However, please everybody understand. I respect every CVDs patients decision to place one's faith in the physician's standard of care medical opinion, that this available 1% reduction in 5-year mortality is the best evidence-based treatment. Also I do respect every ME patient's hope in these in the future available treatments with patentable compounds.

It's just I don't have that hope anymore out of my experience, and am looking for alternatives. In flesh as in mind, without exclusion. If we can all respect each others decision everything would be fine..


CVD treatment has been denied because how profitable medical science is set up (in my humble opinion) - ME treatment because of lack of looking also into physical causes of this disease (in the opinion of most members here). I'm just pleading for respect of opposing opinions. Which just wont happen if my opinion is seen as the cause that treatment has been denied to ME patients.

(typos)​

 

[Valentijn]

One has to read only 3 threads of remission-stories here on PhoenixRising, to understand that that kind of opposition to such stories is very prevalent to almost all remission stories.

Those few remission anecdotes attributed to treatments contradict both the scientific research and the very large patient surveys. Hence they seem likely to be the result of coincidence, misdiagnosis, and/or a temporary enthusiasm following the various brain-washing programs.

 

[pamojja]

Those few remission anecdotes attributed to treatments contradict both the scientific research and the very large patient surveys. Hence they seem likely to be the result of coincidence, misdiagnosis, and/or a temporary enthusiasm following the various brain-washing programs.

Just as my remission contradicts a century of research about CVD.

With the only difference that I would have a nice MRI picture and countless ultrasounds of the 80% blockage at my abdominal aorta. It's tragic that the same lack of evidence of a physical cause (till now) is used to deny the research - as well as congratulations to former ME sufferers who maybe naively shout their cure from the roof. (which as far as I understand multi-factorial chronic diseases, like CVD or cancer, would rather file under remissions.)

 

[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. 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.

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.

It sure would help this discussion to proceed more on grounds of evidence - than preferred consensus - if you would be willing to show these prospective studies.

 

[Valentijn]

It sure would help this discussion to proceed more on grounds of evidence - than preferred consensus - if you would be willing to show these prospective studies.

Google scholar is a good place to start. Or search for the discussion of it on Phoenix Rising.