Prof Stephen Holgate @AfME conference "we are bathing in ignorance"

Iquitos

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Consequences do not equate to causation. Of course, stress has consequences, not all of them bad. Blaming mecfs on stress is just the latest method of calling it "hysteria" or all in the head.

Think of all the people in the world who have or have had incredibly stressful lives. They don't develop mecfs according to any pattern that could be correlated to causation. So holocaust survivors have more mecfs? Do all the children sexually abused by priests have more mecfs? The oddest thing is that most patients can't think of a reason for getting sick and some who do are simply implying causation from coincidence.
 
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Think of all the people in the world who have or have had incredibly stressful lives. They don't develop mecfs according to any pattern that could be correlated to causation. So holocaust survivors have more mecfs? Do all the children sexually abused by priests have more mecfs?
it can make them more vulnerable
 
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biophile

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Of course stress *may* have health consequences, including increased susceptibility to infections which trigger ME/CFS, but until we see decent research on the issue I am skeptical because all the research so far has been retrospective on questionable definitions of CFS or not even with a medical evaluation (self-report which can be inaccurate).

There has been no well-conducted prospective studies on medically assessed patients. I suspect that for some people, chronic stress may precede ME/CFS physical symptoms in a similar manner that depression appears to be a risk factor for Parkinson's disease but may actually be an early manifestation of the death of dopaminergic neurons.

There has been an obsession with "fatigue" over everything else and newer definitions of ME (ICC) and ME/CFS (Jason et al) even allow diagnosis without fatigue and allow the counting of early non-fatigue symptoms before fatigue sets in (CFS definitions do not). If ME/CFS is a disease which can manifest gradually, and post-exertional symptomatology is a hallmark of the condition, it is possible that some people are already developing it but just happen to go through a period of extreme stress and over-activity or major life events, which generally worsens symptoms or hastens decline for any patient.
 
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There has been an obsession with "fatigue" over everything else and newer definitions of ME (ICC) and ME/CFS (Jason et al) even allow diagnosis without fatigue and allow the counting of early non-fatigue symptoms before fatigue sets in (CFS definitions do not). If ME/CFS is a disease which can manifest gradually, and post-exertional symptomatology is a hallmark of the condition, it is possible that some people are already developing it but just happen to go through a period of extreme stress and over-activity or major life events, which generally worsens symptoms or hastens decline for any patient.
fair assessment!
 
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Stress played a very big part in my disease onset, but it wasn't the only factor involved by no means.
what were the other factors in your opinion? It is very strange to dismiss the role of stress as "neither necessary nor sufficient" (whatever that means)
 

August59

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Stress played a very big part in my disease onset, but it wasn't the only factor involved by no means.
I had been under severe stress at work for about 6 months as I was traveling by car Monday through Friday and for 1 whole month I was flying to Denver, CO and back every weekend. My job initially was not suppose to have this much travel associated with it.

I came home from work one Friday and did not get up until Sunday. Went back to bed that Sunday night and tried to wake up that Monday morning and called in sick that whole week. I went to my Family doctor and he said there was nothing he could find and did some blood work that came back normal. He said I must have some type of virus, but I was not running a fever. I was not having any gastrointestinal problems or anything, but my legs and arms felt like they 200 lbs each. When the next week came I hated more than anything trying to get up and go to work, but I did for 2 weeks and I collapsed again and I was out of work for another week. Prior to this I had not missed a day in 10 years, but the more I kept pushing and collapsing I felt inflammation setting in.

I finally changed jobs and the only traveling I had to do was to drive 3 miles to work. I could drive home at lunch and sleep for 45 mins. The housing bubble hit then and I was laid off, but Dr. Black had already written me out on disability for 6 months while I was going to take Valcyte, which I did improve on. I had to stop my COBRA after 6 monthas it was to expensive and I had to stop Valcyte to.

I final got my SSDI and been trying things that I can afford, but that isn't much.
 

alex3619

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what were the other factors in your opinion? It is very strange to dismiss the role of stress as "neither necessary nor sufficient" (whatever that means)
Many people who get ME were not under any psychological stress. Its trivially the case that any triggering event, including infections, are biological stressors. Hence stress is not necessary.

Stress alone is very unlikely to trigger ME. Hence stress is not sufficient.

Now stress plus genetics, plus toxins and infections etc ... that's a different issue.
 
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Stress alone is very unlikely to trigger ME. Hence stress is not sufficient.

and infections etc ... that's a different issue.
No. it is well established that stress weakens your immune system

Stress has been present among many who have been taken ill. But feel free to ignore this if you are convinced that CFS, FMS etc have little or nothing to do with stress
 
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Valentijn

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No. it is well established that stress weakens your immune system

Stress has been present among many who have been taken ill. But feel free to ignore this if you are convinced that CFS, FMS etc have little or nothing to do with stress
Okay, I'll continue to ignore this. I was doing great and very happy at the time that I came down with ME.
 

Bob

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@barbican1, if you believe that CFS is a stress-related disorder then you probably won't find a very receptive audience on this forum.

In terms of evidence, there is no research that shows that psychological stress is a causative factor for CFS or ME. And for every study that shows there is a (weak) association with psychological stress, or a stressful life-event, in a heterogeneous chronic fatigue cohort, there is a study that shows there isn't. There's simply no evidence to show that ME is a stress-related illness. The evidence points towards an immunological (possibly auto-immune) illness.

You may have a stress-related disorder, and no one can argue otherwise. But most of us know that our illness is no more stress-related than MS or Parkinson's.

Sure, stress has a role to play in every aspect of our health, and it is probably wise to reduce stress to manageable levels in order to have best possible health. But human's are designed to tolerate stress. Actually, there is no such thing as a stress-free life. Our bodies are under constant bombardment from self-produced biological stressors, such as biological toxins, which we eliminate in various ways from our bodies. Likewise, our brains are designed to tolerate psychological stress, and we even require it to be fulfilled individuals. (As long as it isn't excessive.)

ME is an illness that is not cured by anti-stress programs or psychological therapies. Some patients find that symptoms can sometimes (but not always) be 'managed' to some degree by reducing stress, and by pacing.

Many people lead very stressful lives, but only a very small fraction of those people develop ME or other illnesses.
Many people who were not leading excessively stressful lives, such as myself, also develop ME.

Chronic stress and depression may indeed cause 'chronic fatigue'. But chronic fatigue is not the same as CFS or ME.
 
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Esther12

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No. it is well established that stress weakens your immune system

Stress has been present among many who have been taken ill. But feel free to ignore this if you are convinced that CFS, FMS etc have little or nothing to do with stress
The evidence doesn't look terribly well established/that great in this area. A lot of people seem happy to go beyond the evidence though: http://www.nature.com/news/immunology-the-pursuit-of-happiness-1.14225

With 'stress', it is likely to be associated with any subjective symptom. Bad things make people feel worse. That doesn't seem to be a terribly interesting observation though.
 
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@barbican1, if you believe that CFS is a stress-related disorder then you probably won't find a very receptive audience on this forum.

In terms of evidence, there is no research that shows that stress is a causative factor for CFS. And for every study that shows there is a (weak) association with stress, or a stressful life-event, in a heterogeneous chronic fatigue cohort, there is a study that shows there isn't. There's simply no evidence to show that ME or CFS is a stress-related illness. The evidence points towards an immunological (possibly auto-immune) illness.

You may have a stress-related disorder, and no one can argue otherwise. But most of us know that our illness is no more stress-related than MS or Parkinson's.

Sure, stress has a role to play in every aspect of our health, and it is probably wise to reduce stress to manageable levels in order to have good health. But human's are designed to tolerate stress. Actually, there is no such thing as a stress-free life. Our bodies are under constant bombardment from self-produced biological stressors, such as biological toxins, which we eliminate in various ways from our bodies. Likewise, our brains are designed to tolerate psychological stress, and we even require it to be fulfilled individuals.

ME is an illness that is not cured by anti-stress programs or psychological therapies. Some patients find that symptoms can sometimes (but not always) be 'managed' to some degree by reducing stress, and by pacing.

Many people lead very stressful lives, but only a very small fraction of those people develop ME or other illnesses.
Many people without excessively stressful lives, such as myself, also develop ME.

Chronic stress and depression may indeed cause chronic fatigue. But chronic fatigue is not the same as CFS or ME.
you make some good points! I don't believe illnesses such as CFS, FMS, IBS etc will be treated by psychological therapies either, for the simple reason that those who have been taken ill (usually) have no psychological symptoms
 

MeSci

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you make some good points! I don't believe illnesses such as CFS, FMS, IBS etc will be treated by psychological therapies either, for the simple reason that those who have been taken ill (usually) have no psychological symptoms
I agree that psychological treatments cannot treat ME, etc., but I do believe that it is likely that stress plays a part in the development of ME in some people. I think there are probably multiple pathways to getting ME - some may have a virus, some may have stress, some may have other causes, and multiple factors may often be involved.

I haven't looked closely at evidence for the physiological effects of stress, but am pretty convinced that there are some, such as immune changes and stress hormone changes. Whilst we are adapted to dealing with short-term stress, which is vital in the fight-or-flight situation, chronic stress is damaging.

I certainly subscribe to the autoimmune theory of ME, and it makes sense that stress could be involved. I seem to recall that there is evidence that stress affects biological barriers such as the gut mucosa and the blood-brain barrier. Disruption of such barriers appears to play a role in the development of autoimmunity.

But just as you can't treat a gunshot wound by putting the bullet back in the gun, you can't necessarily treat the downstream effects of an illness by treating the initial trigger, which may be long gone.
 

alex3619

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Stress is such a bad, over-used and ill-defined term. What is stress? Lots of "experts" have all sorts of definitions, but they cannot agree on them.

Biologically stress occurs when a system is under pressure to maintain homeostasis. When it fails to do so, we also call that stress. This definition also fits mental or emotional stress.

Everything that affects us is a stressor. To claim stress as a major or causal factor really requires it be precisely defined and measurable before we can even begin to research it properly. Its much better to ignore stress and discuss specific mechanisms.

I think many types of counseling could help people with ME adapt and cope. It doesn't treat the ME however. By focusing on nonsense theories using BPS, GET and CBT the psychs actually sabotage their own profession. They also create pervasive distrust of psychs - we don't like psychobabble, and for good reason.
 

Bob

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I agree that psychological treatments cannot treat ME, etc., but I do believe that it is likely that stress plays a part in the development of ME in some people. I think there are probably multiple pathways to getting ME - some may have a virus, some may have stress, some may have other causes, and multiple factors may often be involved.

I haven't looked closely at evidence for the physiological effects of stress, but am pretty convinced that there are some, such as immune changes and stress hormone changes. Whilst we are adapted to dealing with short-term stress, which is vital in the fight-or-flight situation, chronic stress is damaging.

I certainly subscribe to the autoimmune theory of ME, and it makes sense that stress could be involved. I seem to recall that there is evidence that stress affects biological barriers such as the gut mucosa and the blood-brain barrier. Disruption of such barriers appears to play a role in the development of autoimmunity.

But just as you can't treat a gunshot wound by putting the bullet back in the gun, you can't necessarily treat the downstream effects of an illness by treating the initial trigger, which may be long gone.
For the sake of discussion, even if stress does precipitate the illness in some people, that doesn't mean it's a stress-related disease, any more than any other disease that might be impacted by various forms of stress. Perhaps stress can precipitate various illnesses? (e.g. strokes, heart attacks?) But doesn't make them stress-related illnesses. Or perhaps it is during stressful times that a disease process, that is already underway, becomes apparent? (e.g. perhaps MS patients sometimes first notice their illness when they are in the middle of a very stressful life-event?)

I think it's irrefutable that all types of stress causes physiological changes. And it is widely thought that there can be trigger events for ME.
But I personally think that discussions about 'stress' are a distraction from trying to understand the underlying pathology of ME.

There are probably thousands of diseases, and in how many (non-psychological illnesses) is stress said to be a fundamental feature of the illness? (I can't think of any.)

So why do we focus on stress (when there is so little supporting evidence)?
Perhaps because we are all exceptionally familiar with stress, and some of us were stressed when we got ill. It's an easy lay-person's explanation, but there's little evidence for it.
It's because so little is known about the illness that people can easily talk about vague notions of it being a stress-related disease.

I think it's unimaginative to focus on stress. There are millions of potential/hypothetical explanations for the underlying pathology of ME, and many of the potential explanations are still unknown to science and medicine.

We have trillions of cells, all with intricate and complex inner workings. Which precise cell or cellular activity has malfunctioned? Why has it malfunctioned? Prof Holgate hits the nail on the head re "bathing in ignorance".
 

alex3619

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@Bob, I was going to write more about stressing dysfunctional systems. That's a part of chaos theory. If a system is pushed beyond its limits it can collapse and re-establish a new stable state. In terms of health if you have heart disease, or neurological dysfunction, or metabolic dysfunction, then any stressor on the system that is big enough will induce problems.

That can manifest as symptoms, yet is it the stress revealing the problem, or pushing the system into a new state? If the former its not causal. If the latter it may be causal or co-causal.

It was shown, I think, in the 1970s that pain (a stressor) can slow the healing of bone fractures. Other stressors may or may not do the same thing. Yet we don't call a fracture stress related.