Patients with ME/CFS and chronic pain report similar level of sickness behavior as individuals injected with bacterial endotoxin... 2019, Jonsjö et al

I do not find that my emotions have any bearing on my ME symptoms. In 52 year of illness there have been lots of emotions but troubled times only affect my ME if they involve lots of movement. The adrenalin of a crisis actually lessens ME symptoms though I pay for it later.

 

I don't see an emotional aspect, either. Having a chronic illness can be distressing, yes, but I don't see anything particular to ME that's emotional.

MS has emotional lability as a possible symptom, but it's still firmly considered neurological.

I guess emotional lability could occur in some patients with ME, too, but that's entirely in-keeping with other neurological conditions such as Parkinson's, ALS, dementia, etc. It's definitely not a core symptom, and it's not even a commonly listed secondary symptom.

I think the only tenuous link is that depressed people are tired, we're tired, and some old studies had inconsistent findings regarding cortisol. Nothing about the illness particularly suggests emotionality.

 

Two issues here. One is definitions, sickness behaviour is caused by the illness affecting the nervous system, its not about the affect of emotions on disease progression though that is also real and both interacting together can cause a negative spiral in my experience.

https://en.wikipedia.org/wiki/Sickness_behavior

The other is that emotional lability is a commonly reported symptom in ME but different subtypes may have different experiences, we don't know, that's part of the problem with current criteria.

Many report emotional lability as a factor in ME / CFS along with sensory hypersensitivity to stimuli and other phenomena which I believe may be related. I don't think we can afford not to be aware of these things, its not fair on the people who suffer from them to ignore them.

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

http://www.cfsselfhelp.org/library/managing-feelings

https://www.meassociation.org.uk/2007/01/symptoms-and-diagnosis/

https://phoenixrising.me/folder/ed-2/going-mental-the-mecfs-debate-by-cort-johnson

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6163966/

https://www.massmecfs.org/resource-library/7-coping

I believe to understand these phenomena its necessary to learn how the immune response may create "sickness behaviour" in ME. So the aims of this study are appropriate, its the method, interpretation and argument which I find unconvincing in this case.

I think sickness behaviour needs to be studied the right way i.e. not BPS inspired patient blaming but a compassionate awareness of the deep disruption to the nervous system and its affects on the psyche this kind of condition can create for some people.

Above all interventions should not be trying to ride roughshod over natural responses which are adaptive and palliative care should facillitate ME patients in coping with their condition not impede them. IMHO that is the problem with leaping to an unjustifiable conclusion of dysregulation as the authors of this paper did.

My concern is simply that sickness behaviour deserves to be understood properly.

 

Really “sickness behaviour” as a term is so inadequate.
It seems to cover two entirely different concepts:
1. A behaviour that is a response to being sick.
2. A behaviour that is adopted by people who ”believe” they are sick!

The name ”sickness behaviour” seems to suggest the second meaning, even if its origins were in the first. Indeed, it seems to serve some commentators well, that there is a confusion between the two meanings.

Why has no-one thought to clarify the two alternate meanings with better nomenclature?

eg:
Behavioural adaptation to sickness
versus
Affected sickness behaviour

It doesn’t seem sensible to allow one term to mean two different things!!

 

Some individuals like to repurpose clear descriptions of distinct phenomena and use it for their own ends. I wonder if this is what happened here rather than it being ill defined in the first place?

Perhaps if the science/medical establishment clamped down on such deliberate attempts to confuse and cloud otherwise quite clearly understood meanings it would help matters.

 

I don't believe emotions are a part of my ME either. I can't speak for anyone else but my own take on this is-

1 - people early on in the condition are falling apart. They are under more stress than most people can possibly imagine - their health, careers, social life, finances and possibly relationships are crumbling around them. Meanwhile their doctor finds nothing seriously wrong. They get no definite answers, so can give no definite answers to bosses etc. They are left in absolute limbo while their GP probably tells them they're "lucky" the test results are negative.

Naturally they will be angry, sad, scared and stressed. As ME isn't taken seriously, neither is the huge adjustment that comes with it. Hence emotional lability is noted. It isn't, it's a reasonable and understandable reaction.

2 - when I hit cognitive PEM I start to lose higher intellectual function. Maths, language skills and logic. This is immensely frustrating. It was even more so when I didn't understand what was going on. When this happens I get snappy and irritable and I don't have the necessary resources to maintain a polite facade.

Years on I've learned to avoid getting to this stage. If I can't avoid it and am around people I don't know I'll try to excuse myself. I have tactics planned in advance. With my partner I tell him I'm struggling. We've discussed this when I'm clear headed and not in PEM, he understands what's happening and we just don't talk & I go and rest.

This seemingly emotional reaction is actually a symptom of the loss of higher functions. Keeping cognitive PEM managed dramatically reduces incidences of this.

 

This is anecdote. It's not really my experience.

It's not in most criteria so, for me, that suggests it's not really that common.

Periodic paralysis is also described by pwME but that doesn't make it a 'common' part of ME for most people.

It might be unrelated, a secondary complication, a manifestation of a subtype or a sign of co-morbidity.

Most criteria have a set of overlapping symptoms, of which emotional lability is not usually one.

That's your opinion, and 'many' is another of those weasel-words which isn't very clear. In my view, sensory hypersensitivity appears more frequently in criteria than does emotional lability. That doesn't necessarily mean they're connected (though CCC connects them, I've not seen that connection elsewhere).

I agree mental health is important. No one is disputing that. The issue is whether it's a common part of ME or just something that sometimes arises alongside it.

I've seen no convincing evidence yet to suggest it's a common part of ME yet. (I am going mainly off criteria here, because there isn't much in the way of evidence otherwise.)

The CCC suggests emotional overload may be a consequence or symptom of hypersensitivities and it's thoroughly optional, given as one of a long list of possible symptoms.

Oxford includes it as an optional secondary symptom (but notably has been criticised for being too broad).

But the ICC, IOM, Fukuda, four-item empiric criteria and NICE 2007 don't mention it at all. In my view, that doesn't really make it a common part of the illness by most definitions.

There's only one scientific paper here (most of the rest are pretty dated) and that says ME is only 'associated with', not that it encompasses, includes, requires. Emotional symptoms are associated with most illnesses because illness is devastating.

I also think that's Twisk giving his opinion, and that paper was written by him alone. Most of the criteria written above were formed by a committee of people so there's more consensus there.

I agree.

 

What you are saying - and in accordance to others here- could be the case, given the meaning of the words ("sickness" and "behaviour") - but this is not the meaning of the term nevertheless.

"Sickness behaviour" is a terminus technicus which has a very specific meaning that has been (artificially so to say) defined (and has nothing to do with a common sense grasping from/of the two words).

I don´t know the original attempt (I believe from the early 90´s), I remember only that later Danzer (or Dantzer) has done quite some research on this subject.

Sickness behaviour is a behaviour which is gentically codified and makes the being (be it mouse, snake or whatever) act in a way that promotes healing, so not to move (maybe through feeling heavy), not being interested in things (maybe through being stiff in thinking), and I think also the fight-or flight reaction has been taken into subsumption of this term (in case that the ill being is supposed to be eaten by another being).

This is how I recall it. As having said, I don´t know the original paper nor can I remember right now where I have read it the first and some other times. But it seems to me a reasonable and good attempt to understand ME/CFS as an ill sickness behaviour. One might say, ME is a sickness behaviour without an illness of first order, being now an illness of second order.

"Sickness response" then does mean the same than "sickness behaviour", at least so far, though maybe in future "response" might refer more to the biomedical machinery, and "behaviour" more to the more or less visible outcome?

 

No

 

Yeah, I don't think ME is sickness response in the absence of illness.

While it would explain fatigue and some of the constitutional symptoms, the sickness response doesn't account for PEM or OI.

My feeling is that the prolonged sickness response is due to some dysfunction in the brain that also causes PEM.

 

Why

 

But the sickness response is most likely codified by the nervous system (making a sick feeling and so forth), so I don´t understand why you are in agreement with "no".

And furthermore of course, especially the nerves should be able to induce a delayed PEM, so best candidate.

 

Yes.

I think the sad problem is that there is no understanding or imagination of how "sickness behaviour" (the biomedical response) does work. And then they turn their proposal to things that are established (CBT) in hope that it might work. But in fact they are saying absolutely nothing. Or do the want to suggest that LPS injected ppl can be cured from such an induced sickness behaviour by CBT?? Hardly.

If I remember rightly, the concept of sickness behaviour has firstly been aimed at depression. Here the motivation is affected, which is not affected in ME, maybe this is the reason why there is sometimes an influence by CBT on depression, as far as I know. But also in (severe) depression it seems that the resulting feeling (sad, hopeless) is completely exaggerated to the deeds. Albeit [an exaggeration] should be a common to ME, this does not say in itself by any means that there is an influence from CBT on ME to hope. A sickness response is obviously enough complex.

I think healthy ppl don´t imagine how disrupted basic feelings can be in ME. Although it might be - I don´t know - that psycholgical induced misfeelings could be fairly strong (I don´t know, but say an underlying panic attack), it is - I do know - laughable to claim substantial help by CBT for the ME-feeling (at least was this for my feelings). The problem is, when I say "not to endure" it´s only some words which might also be chosen by others.

To be hopefully crystal-clear: An ill self-derterminated sickness response can logically be tried to be applied to any relevant reactions made by the nervous system, say to delayed PEM which might be not too uncomfortable but might get worse soon enough when ignored.

 

The thread has moved on now, but I'd written this so am going to post it anyway.

That's not much bloody use is it? I score 9 on that, and I'm at the severe end of moderate as I understand it.

"I wish to be alone" - shades of Greta Garbo! I don't wish to be alone, so that's a 0 then. And I don't wish to keep still either - just rather limited in how much movement I can do. I don't feel depressed - I've had clinical depression in the past, so am damn sure I know what that feels like. Aaarrrggghhh!

I score on feeling drained, shaky and tired.

And this is just plain stupid: "I don't wish to do anything at all" - I wish to do an awful lot of things (especially getting out sailing on Ruddy Duck) but I don't have the physical capability. I can stand for maybe a minute if pushed - leaning on somebody or something, or with walking stick or crutches, but even walking 5 metres is difficult (from seat to toilet in caravan).

It's trying to trick you into saying you "don't wish" to do things that you aren't physically capable of doing.

 

In an evolutionary sense, it can make sense to favour behaviours that ensure an individual rests when sickness is present. The “sickness behaviour” in response to the state of ill-health should ensure the best chance of recovery, and hence the survival of the individual.

The converse is not true. There is no evolutionary advantage to be gained by prolonging a “sickness behaviour” after the sickness has resolved. Indeed doing so would seem to substantially reduce the individual’s survival rate.

Thus “sickness behaviour” only makes sense in the presence of sickness. It makes no sense otherwise.

So some might say that ME is the failure of the “sickness behaviour” (ie the response to ill-health) to get turned-off after the ill-health is over.

But there is a problem with that hypothesis. If it were so, then surely ME patients should feel continuously ill? Why would something like exertion cause the symptoms of sickness - and thus the “sickness behaviour” - to become exacerbated? And how would careful pacing allow us to stabilise somewhat?

If it were simply the failure of a “sickness behaviour” switch to “turn off”, then surely we could not have activity dependent symptomology?

 

Good points alltogether. To answere this last objective:

1. The Sickness Behaviour could use a normal exhaustion mechanism for inducing its behaviour, this then could show up in ME (though does not show up in depression). Here one may but say, I think, that in normal sickness also a tiredness likes to be present, what in my understanding is in a pricinple just lacking in ME/CFS.

2. In normal illness the being must stay to do things nevertheless, but must not overdo in view of the health problem the body is faced with. So an accelerated exhaustion is not out of the scope.

 

Speaking for myself - I don't recognise what you are describing here.

I am a self confessed irascible individual. Quick to anger, quick to laugh and don't suffer fools gladly. I've always have been like that. My whole family are.

If anything since developing ME, I have become a little more even tempered. Especially when I realised -

1) exerting to the extent cognitive function becomes impaired will make me very bad tempered. This is a secondary affect or symptom of cognitive PEM

2) extremes of emotion cause or exacerbate PEM - including the good ones sadly.

I don't judge anyone else who struggles emotionally for whatever reason. I just don't recognise this as a fundamental part of the condition I live with.

 

Speaking for myself I didn´t mean emotional - i.e. somehow complex - feelings.

Begging anybodies pardon, I might have chosen the wrong word, I meant pain, breathing, sleeping, walking, concentrating, skin feeling like chewing gum, and some other things.

In fact I personally was emotionally absolutely stable when I was very bad. It seems that the most of us are, at least when having suffered for some while. Such stability which one might have or might not have has nothing to do with sickness behaviour, and nothing with any annoying theory about adapting sicky behaviour (not sickness behaviour). It´s in a logical sense superior to it, I think.


In my view, in this difficult subject of a complex disease without any biomarker so far, it is absolutely necessary to be precise in terminology, so "feeling" refers in English only to complex xxx, which are emotions. What is or could be a proper term?

In German e.g. there is none, and one must extent the word feeling (Gefühl) for the meant entity. And so one may even go one step further and may have an "airplane feeling", saying: "I have a feeling that there an airplane comes along." eventually indeed saying "This is an airplane." - now emotions or pain are not such perceptions (only pain may become one when you localize it: "I have pain in this and that tooth"). I am curious for the right word.

 

@spinoza577

Nothing confuses quite so well as the English language! Even for native English language speakers.

Feelings can mean
- Emotions - I feel - sad, angry, scared, happy, excited etc

- Physical sensations - to feel - sick, pain, tired, unwell, indigestion, a headache coming on etc. You might feel pain in your tooth when you have a toothache.

- Intuitions - you can "have a feeling" - that the train will be delayed, the rain will never stop , that this film might be good and so on.

I think that sums up the common use of the word feelings. If not, someone please join in and correct me.

 

Although not speaking English quite too well, I love the English language!