ME/CFS Research (Dr Amolak Bansal) and Management (Dr Charles Shepherd)

[Hutan]

Illness behaviour and sickness behaviour are not the same.

True. And the term Illness Behaviour came first I think, to cover the very broad range of behaviours when ill such as seeking medical care. Which makes the Sickness Behaviour term, which sounds so very similar, all the more problematic.

Sickness Behaviour is, I think, an instinct driven by chemical signalling and the resulting symptoms - to withdraw, to focus on getting well. And people like Mansel Awlyard (quoted above) think that humans can and should overcome base animal instincts - it's just a matter of attitude.

Despite the heat in some of the conversations, I doubt that we are all that far apart on this issue. Yes, Sickness Behaviour has a specific scientific meaning that makes no moral judgement. But obviously people can easily misunderstand and mis-use the term and concept.

I don't know what we do, other than to describe theories of Sickness Behaviour in relation to ME in terms of the biochemistry (pro-inflammatory cytokines etc) and make sure others do too. And fervently hope that the actual cause of ME has a better name.

... 'My faulty sickness behaviour is causing my chronic fatigue syndrome...' arghh. A battle for another day.

 

[Hip]

@Hutan
I have had very good responses from people when I have explained to them how ME/CFS might arise from sickness behavior. People seemed to intuitively understand and relate to it.

When explaining this, I start by telling people to think back to when they were last ill in bed with the flu or some other significant infection. I tell them the reason the flu makes them feel very tired, mentally hazy, a little depressed, desiring for peace and quiet and social withdrawal, etc is because these symptoms and behaviors are deliberately created by the body, in order to ensure that humans don't waste energy doing other things, and so can devote all their energy to fighting the infection. I explain that this deliberately-created behavior is called sickness behavior, and that sickness behavior is designed to help the body best deal with infection.

Most people are happy to accept such ideas, as it intuitively makes sense. I then explain that in ME/CFS, the theory is that a persistent infection has chronically activated the sickness behavior response, so that ME/CFS patients constantly feel as tired and as brain fogged as those with the flu.

At this point, for a lot of people the penny drops, and they begin to see ME/CFS symptoms as something driven by issues in the body, rather than the old erroneous idea of a lazy mental attitude. As most people will have experienced the symptoms of flu or a major infection, you are explaining ME/CFS in terms of something they can relate to and understand. That is the beauty of the sickness behavior explanation for ME/CFS: it is a very good way to explain ME/CFS.


So in summary: rather than sickness behavior reinforcing the old stereotypes of ME/CFS patients feigning their disease, in fact I found that the sickness behavior explanation of ME/CFS is a great way of making people realize that ME/CFS is a real biologically-caused disease linked to chronic infection.

 

[lansbergen]

Most people are happy to accept such ideas, as it intuitively makes sense. I then explain that in ME/CFS, the theory is that a persistent infection has chronically activated the sickness behavior response, so that ME/CFS patients constantly feel as tired and as brain fogged as those with the flu.

It is not constant, it fluctates.

 

[Chrisb]

........is because these symptoms and behaviors are deliberately created by the body, in order to ensure that humans don't waste energy doing other things, and so can devote all their energy to fighting the infection. I explain that this deliberately-created behavior is called sickness behavior, and that sickness behavior is designed to help the body best deal with infection.

I am not familiar with any usage by native English speakers of the word deliberately as in the sentence "these symptoms and behaviours are deliberately created by the body", and do not understand what could possibly be meant by it. At best, the word "deliberately" appears otiose.

This appears to be the root of the problem over this idea of sickness behaviour.

 

[Valentijn]

I'm also not impressed with the concept of sickness behavior as applied to ME/CFS. It accounts for a minority of symptoms at best.

 

[charles shepherd]

It is not constant, it fluctates.

Whilst there is a considerable amount of good quality research evidence to support a role for reactivated viral infection in ME/CFS (EBV in particular - as Dr Bansal pointed out during the Sussex meeting), the evidence for persisting viral infection is conflicting and not not very convincing in our current state of knowledge.

From the Research (Infection) section of the 206 MEA purple booklet:

Disruption in immune responses in ME/CFS may also allow the reactivation of common latent viruses, such as Epstein-Barr virus (EBV) and human herpes virus type 6 (HHV-6), as well as prevent the effective clearance of endemic viruses, such as enteroviruses. A study from Chapenko et al (2012) in Latvia found a high rate of active HHV-6, HHV-7 and parvovirus B19 infection/co-infection, with a simultaneous increase in plasma pro-inflammatory cytokines, as well as an association between active viral infection and distinctive types of clinical symptoms (sub-febrility, lymphadenopathy and malaise after exertion with betaherpesvirus infection and multi-joint pain with parvovirus infection).

However, the findings here are not always consistent as shown by a more recent research study carried out in Australia (Cameron et al 2010), which involved people with post-infectious fatigue and used a comprehensive range of serological assays for EBV, HHV-6 and cytomegalovirus. Cameron et al found no evidence to support the hypothesis of on-going or reactive infection with these viruses in the pathogenesis of ME/CFS. Using luciferase immunoprecipitation systems, Burbelo et al (2012) explored the sero-epidemiology of HHV-6A and HHV-6B infection in ME/CFS. This group found no significant differences in antibody levels or frequency of these infections between patients and controls. A study from Oakes et al (2013) also failed to support a role for reactivation of HHV-6 or HHV-7.

 

[Wolfiness]

I'm also not impressed with the concept of sickness behavior as applied to ME/CFS. It accounts for a minority of symptoms at best.

Yes - Dr. Mady Hornig found that the cytokine response in patients dropped after a year or two, but they didn't necessarily get better. Other than 18 months at the start of my severe illness I very, very rarely feel inflamed or fluey or lethargic or brain foggy, and I've had disabling fatigue for 6 years before that and very severe ME for 15 years after.

My problem is the absence of stamina rather than the presence of fatigue, I would say. So if I try to explain my illness as Hip does I run out of road, and as I say I worry when people start with the cytokines unless they can end up explaining the presence of all the symptoms including those that existed years before the glandy sore-throat-and-little-fevers stage.

The term sickness behavior perfectly describes the phenomenon it labels: the set of adaptive behavioral changes that an animal manifests during the course of an infection. The term is apt and accurate.

And note that the study of the sickness behavior mechanism has absolutely nothing to do with ME/CFS, except for one unproven recent idea that suggests this mechanism might possibly be at play in ME/CFS. Thus given it has nothing to do with ME/CFS, it is kind of presumptuous for ME/CFS patients to expect researchers in this completely different field to change their terminology — which is a very apt terminology — just to suit our purposes.

OK, I get you now. I guess for me this is part of the ongoing problem that we talk as though we all understand what choice and free will in behaviour is, and what is and isn't susceptible to conscious intervention, when neuropsychology suggests we don't.

 

[Wolfiness]

I am not familiar with any usage by native English speakers of the word deliberately as in the sentence "these symptoms and behaviours are deliberately created by the body", and do not understand what could possibly be meant by it. At best, the word "deliberately" appears otiose.

This appears to be the root of the problem over this idea of sickness behaviour.

The point is that it's not the pathogen directly that makes you feel cr@ppy, it's the body's own response to it. So your body can make you feel ill when there isn't any pathogen for which this response is designed but it acts as though there is. As a senior PR member you must know this, so I'm not sure I understand your point. It's the difference between a smoke alarm being activated by smoke and someone 'deliberately' tripping the switch in the absence of smoke.

 

[Chrisb]

My point is a simple one about the use of language and the confusions which it can cause. A person might be said to act deliberately. It appears to be a category error to say that a body can act deliberately. What is it that does the deliberating and what is the nature of the process?. Deliberate action is the language of mind/body dualism and free will-both of which are questionable ideas.

I do not recall suggesting that a body cannot "feel ill" in the absence of a pathogen. The absence of a pathogen, if it could be proved, would provide poor evidence as to whether a person was, or was not, sick. It might rule out certain types of sickness.

I am not at all sure that your metaphor will be regarded as helpful. Are we to be regarded as deliberately tripping the switch in the absence of smoke?

 

[duncan]

I don't think any one is debating an organic response - or any response, for that matter.

The problem is in the nature of the word "behavior". It is laced with dangerous connotations which dovetail nicely with the beliefs of the BPS school.

There is absolutely no good reason for pwME to use the loaded terms "sickness behavior". If it is because some within the medical community use it, what of it? THEY shouldn't. Regardless, why should we? Because it sounds fashionable? It's a fad in certain medical circles? A veterinarian promoted the concept of "sickness behavior"; let the vets keep it since they cannot simply ask their patients to explain their symptoms. As a concept, it seems suited to not needing or even necessarily wanting patient opinions...Sound familiar?

If it potentially does a disservice to not only to our community, but any that can be preyed upon by the psych contingent, why would we condone it? Worse, why would we participate in it??

There is a simple and smart way of dealing with language which is counter-productive to our goals of getting ME recognized globally - and locally at our community clinics - as an organic disease: Don't use it.

 

[charles shepherd]

The point is that it's not the pathogen directly that makes you feel cr@ppy, it's the body's own response to it. So your body can make you feel ill when there isn't any pathogen for which this response is designed but it acts as though there is. As a senior PR member you must know this, so I'm not sure I understand your point. It's the difference between a smoke alarm being activated by smoke and someone 'deliberately' tripping the switch in the absence of smoke.

Yes, in very simple terms, it is not the virus that makes almost everyone feel yuk (i.e. loss of appetite, fatigue, muscle aches and pains, cognitive dysfunction etc) when they have a dose of flu. It's the immune system response (especially cytokines) to the virus that causes this very specific form of sickness behaviour (to use the unfortunate terminology)

 

[Chrisb]

I can see the picture now. The originator of the term under his duvet as his spouse tries to wake him. "I won't be going to work today. I'm suffering from a bad case of sickness behaviour," says he.

Perhaps the verb conjugates:

I am sick; you are displaying sickness behaviour; he is somatising.

 

[Wolfiness]

My point is a simple one about the use of language and the confusions which it can cause. A person might be said to act deliberately. It appears to be a category error to say that a body can act deliberately. What is it that does the deliberating and what is the nature of the process?. Deliberate action is the language of mind/body dualism and free will-both of which are questionable ideas.

I do not recall suggesting that a body cannot "feel ill" in the absence of a pathogen. The absence of a pathogen, if it could be proved, would provide poor evidence as to whether a person was, or was not, sick. It might rule out certain types of sickness.

I am not at all sure that your metaphor will be regarded as helpful. Are we to be regarded as deliberately tripping the switch in the absence of smoke?

Ah ok, we're on the same page now. In my metaphor our neuro/immune systems are tripping the alarm, so our brains are doing it as opposed to our minds. But I agree as per the bolded bits that this anthropomorphosises unconscious systems and hence is misleading. 'Inappropriately' would be better than 'deliberately'.

The thing is, I agree with the rejection of dualism and supreme free will but this rejection is also a key part the biopsychosocial paradigm as I (very roughly) understand it, isn't it? So you can take those assumptions and come to very different conclusions.

The question for me remains whether you can retrain and physically alter your brain via your mind, as the neuroplasticity advocates claim. I've tried repeatedly via the Gupta/DNRS method but I've never managed it. Yet I feel a pressure from the Ashok Gupta/Optimum Health Clinic/Dan Neuffer type people who suggest it is within my capabilities to damp down an overactive neurological response. I believe some people manage it and some don't, but to blame people for failing seems like victim-blaming in the absence of any clear understanding of where the crucial dysfunction is in any individual person or what changes it. And yet I still feel like a failure.

 

[Snowdrop]

The question for me remains whether you can retrain and physically alter your brain via your mind,

There are plenty of claims to that effect. I'm not sure how much good science there is to back that up. There is a case to be made but like all things in a complex system it's not likely to be a monolithic answer. It seems to me that there is a problem of over playing the significance of the effect.

That is to say--if you could prove that the 'mind' whatever that is can indeed influence changes to the body/brain is it possible that those changes might depend on how deep or shallow the behaviour (or really the chemical pathway) is? This would of course be different for each individual.

As an example, lets say there is a point on a line that is the neutral set point for worry--a non worrier. The mind of an individual may be enough to have an effect for a person who is a mild worrier to set back to normal but an intense worrier might need some sort of appropriate chemical help (if such were available) to effect a reset--although they too may be able to effect some small change toward neutral.

I use the worrier example because it's often used against sick people. Worry is not only a behaviour but a personality trait--one that often seems to invite a moral dimension. Add to that the environment--some people will be exposed to more opportunities to worry thus increasing the feed back and any equal response from the mind will yield different results.

To me the whole mind/body thing is a smoke screen and an opportunity for those who use it to abuse patients and or save their masters money by putting the onus on the patient to get well.

 

[Hip]

I am not familiar with any usage by native English speakers of the word deliberately as in the sentence "these symptoms and behaviours are deliberately created by the body", and do not understand what could possibly be meant by it. At best, the word "deliberately" appears otiose.

This appears to be the root of the problem over this idea of sickness behaviour.

Are you sure you are not feigning confusion?

Sickness behavior can be understood in the context of evolutionary psychology. The field of evolutionary psychology examines how evolutionary forces slowly forge behavioral responses in animals. The idea in this field is that evolution not only shapes the physical attributes of creatures, but also their behavioral aspects. Any behavior that promotes survival will be promoted by natural selection.

By using the word "deliberately," I am alluding to the idea that evolution or nature may have some intention behind it (since deliberation requires conscious intention). Of course, most scientists would argue against the idea that evolution has any intention; it's usually posited to be just a random process; but I have just metaphorically endowed it with intention for linguistic purposes. It is not uncommon to do this in language. Surely you have come across this linguistic device before.

 

[duncan]

"Sickness behavior can be understood in the context of evolutionary psychology."

Yes.

 

[Chrisb]

By using the word "deliberately," I am alluding to the idea that evolution or nature may have some intention behind it (since deliberation requires conscious intention).

Its just that it sounds like creationism to me

 

[msf]

I believe ´otiose´ has won the word war.

 

[Wolfiness]

There are plenty of claims to that effect. I'm not sure how much good science there is to back that up. There is a case to be made but like all things in a complex system it's not likely to be a monolithic answer. It seems to me that there is a problem of over playing the significance of the effect.

That is to say--if you could prove that the 'mind' whatever that is can indeed influence changes to the body/brain is it possible that those changes might depend on how deep or shallow the behaviour (or really the chemical pathway) is? This would of course be different for each individual.

As an example, lets say there is a point on a line that is the neutral set point for worry--a non worrier. The mind of an individual may be enough to have an effect for a person who is a mild worrier to set back to normal but an intense worrier might need some sort of appropriate chemical help (if such were available) to effect a reset--although they too may be able to effect some small change toward neutral.

I use the worrier example because it's often used against sick people. Worry is not only a behaviour but a personality trait--one that often seems to invite a moral dimension. Add to that the environment--some people will be exposed to more opportunities to worry thus increasing the feed back and any equal response from the mind will yield different results.

To me the whole mind/body thing is a smoke screen and an opportunity for those who use it to abuse patients and or save their masters money by putting the onus on the patient to get well.

Yes, exactly, Snowdrop. We simply don't know for sure where the boundary between empowerment and victim-blaming is in any individual. The doctors don't know and the patients don't know. This is true in so many areas, from overeating to stroke recovery. I lost 30kg over eighteen months a few years back, so I know consistent moderation isn't completely alien to me, but for the life of me I can't get myself to regularly relax. I can remove myself from Nintendo the way I can remove myself from chocolate but I can't remove the compulsion that can't bear to leave things unfinished whether it's a Galaxy 200g bar, Super Mario World or this senten…..

 

[Wolfiness]

Are you sure you are not feigning confusion?

By using the word "deliberately," I am alluding to the idea that evolution or nature may have some intention behind it (since deliberation requires conscious intention).

Its just that it sounds like creationism to me

The rest of Hip's paragraph makes it clear it's an anthropomorphosising metaphor, which is ok providing everyone understands the exact same amount of metaphorical anthropomorphosis vs. actual conscious intention, but of course they don't.

Incidentally we're really losing something on this board by not having a quote-within-quote display mechanism when we argue with each other. When I argue with my queer homies on different sites we take it to town.