Motivation and ME/CFS

[Bob]

So I'd revise and say for a sick person who doesn't actually have the capacity, a normal definition of motivation may not be fully useful.

I don't think being ill is the same as lacking motivation, even if the one sometimes causes the same effect as the other.

I think there's a slight difficulty with that though, because a 'lack of motivation' is often associated with depression.
So, with depression, being ill can cause a lack of motivation if there is a reduced 'desire' or 'interest' to engage in activities.

But I agree that we need to change the parameters when talking about 'motivation' for people with chronic or severe disabilities or illnesses.

Although I rarely feel excessively up-beat and full of vitality (and never feel like partying or bungy-jumping), there are plenty of low-key interests in my life. which I enjoy engaging in.
So perhaps our 'motivation' is displaced to a focus on new, non-usual, activities.
As Hip says, he has plenty of motivation for new activities that he wasn't involved in previously, so his motivation has been displaced from tidying/organising to researching health issues.

I think my levels of motivation fluctuate, depending on the severity of my symptoms.
It's not surprising, considering the nature and severity of the symptoms.
For example, sometimes when my symptoms are at their worst, I'm very grateful for my sofa, and I don't feel like doing anything other than resting, and perhaps watching a film.
But that doesn't mean that I lose interest in everything. It's not the same as losing interest in life in general, as can happen with depression. I'm still interested in things, unless I'm totally knocked out, temporarily.

When my symptoms are less severe, then my mental vitality and enthusiasm for life do increase somewhat.

When someone has flu, they don't have much motivation, but are bed-bound, and are often content to be bed-bound, preferring to stay in bed rather than do activities. This is because of the severity and nature of the symptoms. So physical illness can lead to reduced motivation.

Anyway, it's a very complex issue, and an interesting discussion.

 

[SOC]

I think what the Norwegian study in the OP shows is that, in fact, patients with ME/CFS have a lot of motivation, but lack ability due to ill health. As a result, we engage in a productive activity that is within our ability.

All of us know, I think, that our lives could be improved (and more productive) if we could reduce some of our symptoms, so it makes sense that we are engaging with forums like this to discover what other patients, their doctors, and researchers are doing. Better than sitting around watching daytime TV or playing video games, which is are much more likely activities for the unmotivated.

Lack of motivation is a symptom of depression, which can be comorbid with ME/CFS, so some patients may have lack of motivation, but I certainly wouldn't call it characteristic of ME/CFS.

 

[Hip]

Does anyone find that the enforced requirement to undertake or complete a task creates excessive mental tension and stress? By enforced requirement, I mean when there is a need to do something (and/or deadline to do something), for whatever reason. This enforced requirement to do something is in contrast to when you yourself want to do some task, or have enthusiasm for doing the task.

I find that I can get involved in tasks that don't require much pre-planning or don't have a specific enforced goal or deadline. But when there is a specific goal or deadline to meet for a task, suddenly there is huge mental stress involved; and under these conditions, the task itself brings on a sense of mental exhaustion. The stress and sense of exhaustion does not come from the task itself, but from adopting a planned, goal-oriented disposition towards the task. But if I just amble on sweetly in my own time and in my own way, with no particular required goal, under my own steam and enthusiasm, then there is no stress in performing tasks.

 

[heapsreal]

Does anyone find that the enforced requirement to undertake or complete a task creates excessive mental tension and stress? By enforced requirement, I mean when there is a need to do something (and/or deadline to do something), for whatever reason. This enforced requirement to do something is in contrast to when you yourself want to do some task, or have enthusiasm for doing the task.

I find that I can get involved in tasks that don't require much pre-planning or don't have a specific enforced goal or deadline. But when there is a specific goal or deadline to meet, suddenly there is huge mental stress involved. The stress does not come from the task itself, but from the need to adopt a goal-oriented disposition towards the task. But if I just amble on sweetly in my own time and in my own way, or under my own steam and enthusiasm, then there is no stress in performing tasks.

I hate deadlines and preplanning, prefering to wing it and plodding along. I think its just that each day is different and theres always something else that pops up too. This might also be ingrained in me due to my work which varies from hour to hour. The only thing i have pre planned is turning up to work which varies also. generally my vegetation/recovery days maybe needed at any time just like a crappy nights sleep can pop out of the blue.
It almost sounds exciting saying i wing it but in reality its dam boring lol.

 

[rosie26]

It is kind of boring. I can't even let myself get excited about things for too long as it increases my heart rate and then my inflammation starts up.

 

[SOC]

Does anyone find that the enforced requirement to undertake or complete a task creates excessive mental tension and stress? By enforced requirement, I mean when there is a need to do something (and/or deadline to do something), for whatever reason. This enforced requirement to do something is in contrast to when you yourself want to do some task, or have enthusiasm for doing the task.

I find that I can get involved in tasks that don't require much pre-planning or don't have a specific enforced goal or deadline. But when there is a specific goal or deadline to meet, suddenly there is huge mental stress involved. The stress does not come from the task itself, but from the need to adopt a goal-oriented disposition towards the task. But if I just amble on sweetly in my own time and in my own way, or under my own steam and enthusiasm, then there is no stress in performing tasks.

Not me. I have had times with this illness where mental fatigue was extreme and there was little mental or physical work I could do for very long at all. This wasn't a stress issue, though.

OTOH, I wasn't trying to work in my chosen profession at the time. I would not have been able to meet normal work deadlines when I couldn't read a page without being exhausted. Maybe if I was trying to do work I was unable to do because of my illness, I might have felt stressed.....

In general, goals motivate me -- especially in tasks I don't want to do.

 

[Bluebell]

In my case, too much thought or mental activity will exhaust my mind, and leave me unfit for any further mental tasks. In this exhausted state, I become a bit zombified, and this tends to make me sit around with my brain in neutral, doing nothing.

The above describes my experience.

I am not depressed. But I have very little motivation. It's mainly because I can't do much "big stuff", that I don't desire to do much. I have a constant mental and physical fatigue. My head is on 20% power. I'd rather close my eyes and rest my thoughts (not rest my feelings, though). This is so unlike me - my brain was always the most active and alive part of me!

I do not have the motivation to plan anything big, or even anything small, because I won't be able to do it, energy-wise. I have watched many of my prior life plans fall through, and perhaps become permanently unavailable to me. I am not angry at that, I am sad about it, and trying to accept what I ought to for my own peace of mind, and trying to work out what is still possible, as the birthdays tick by. I am not depressed.

Some people might conjecture that I have mental depression, looking at my symptoms/feelings (if they don't look at the rest of my physical health problems), but it's a slightly different thing. My underlying spirit and thoughts and moods are not depressed at all.

I do not have, nor have I sought, a medical diagnosis of CFS/ME (although I've had life-changing fatigue and related symptoms for several years), so I don't feel that my opinion is equal to the opinions of you who have been deep in the trenches for years with CFS/ME. I am not jumping into the argument because I could not be a full-fledged participant.

I don't know much about CFS/ME, but I know that anything that has a whiff of psychology is a touchy subject for people who have been misunderstood and misdiagnosed by so many medical professionals, and who may bristle at anything that sounds like they are being told they have a "mental" problem. I'm not saying what anyone has is even remotely a "mental" problem.

...Not that there is anything wrong or "lesser" about having a mental health problem, which is often at basis a "real" physical problem anyway, if the investigation is good enough.

(Even the condition of being a sociopath shows a discernible pattern on brain scans for most sufferers.
http://www.scientificamerican.com/article.cfm?id=can-you-make-sociopath-through-brain-injury-trauma
http://www.technologyreview.com/news/407738/what-can-neuroscience-tell-us-about-evil/
http://www.npr.org/templates/story/story.php?storyId=128116806)

Maybe different folks define "motivation" differently. I have no problem saying that I have very little motivation. I don't feel bad about that. Why couldn't lack of motivation be felt concurrently with a host of other symptoms? How is it different from having frequent headaches or having slow-moving bowels or poor blood circulation in the extremities?

"Motivation is defined as the process that initiates, guides and maintains goal-oriented behaviors. Motivation is what causes us to act, whether it is getting a glass of water to reduce thirst or reading a book to gain knowledge.
It involves the biological, emotional, social and cognitive forces that activate behavior." http://psychology.about.com/od/mindex/g/motivation-definition.htm

"Fatigue is different from drowsiness. In general, drowsiness is feeling the need to sleep.
Fatigue is a lack of energy and motivation.
Drowsiness and apathy (a feeling of not caring about what happens) can be symptoms that go along with fatigue."
http://www.nlm.nih.gov/medlineplus/ency/article/003088.htm

I have fatigue -- I have "a lack of energy and motivation".
I am not apathetic, however. I am not down on myself. I am cheerful and calm.

I have until recently been iron deficient. I have the compound heterozygous MTHFR mutations and worsening symptoms of folate and B12 deficiencies, including vision damage at a relatively young age. I have had an underactive thyroid for years. I have low DHEA-s. I am deficient in Vitamin D. I may have cancer. I may have adrenal gland hypofunction or whatever it's called. I may have some pesky viruses - I was thought in my 20s by my doctor to have Lyme when I was living in one of the hotspots for it, but the blood tests never came back positive; then I came down with shingles in my 30s. I may have macrocytosis (depending on whose scale is used; Wikipedia thinks I do). I have had delayed sleep phase disorder all my life. So, yes, I have fatigue. And now, in the last few years, I have no motivation. I feel absolutely blase about everything. I have been in a holding pattern for a number of years and I simply cannot force myself through willpower alone to do things -- that ability was burned out. I also have had since I was pretty young an anomie and existential despair which is nothing to do with typical mental depression, more just a spiritual position. Since I have several physical problems that can be pinpointed and can be treated, I would not look for a CFS/ME diagnosis, and I am just really glad to finally know (through blood tests that I ordered for myself, after being told by doctors for years that nothing was wrong with me and nothing could be found) that I've got a number of these physical problems that I can work on to try to improve my health and lessen my fatigue.

People here (who officially have Chronic Fatigue Syndrome/ME) seem to have so many different constellations of symptoms. Why can't a lack of motivation be a possible symptom amongst the hundreds, if the very definition of fatigue is a lack of energy and motivation? I am sure that there are layers to this that I cannot possibly know. I'm just explaining my view.

 

[SOC]

People here (who officially have Chronic Fatigue Syndrome/ME) seem to have so many different constellations of symptoms. Why can't a lack of motivation be a possible symptom amongst the hundreds, if the very definition of fatigue is a lack of energy and motivation? I am sure that there are layers to this that I cannot possibly know. I'm just explaining my view.

I think the issue is relatively simple -- the illness we are addressing in this board is a complex illness whose primary characteristic is not fatigue -- as least no more than other serious illnesses. The name Chronic Fatigue Syndrome curses us with being mixed with other illnesses, including depression, which also have forms of fatigue as part of the illness. The result is that our research is confounded by the inclusion of people with illness that are not the same as ours.

It is difficult to sort out which symptoms shown by a collection of so-called ME/CFS patients are ascribable to the illness, which to comorbid conditions, and which to different conditions incorrectly identified as ME/CFS. Our best docs and researchers have put a lot of effort into their best shot at the commonalities in the CCC and ICC definitions. We know they're not perfect, but they're the best thoughts of the best thinkers we have right now.

Lack of motivation is not among the currently known symptoms of ME/CFS. It is a known symptom of Major Depressive Disorder, which is often comorbid with ME/CFS. That doesn't make it a less important symptom for those who have it.

This is not an issue of the stigma of mental illness. Mental illness is a major potentially debilitating illness which is no more the "fault" of the sufferer than any other illness. It deserves all the attention and respect any other illness does. The issue is that if we want our illness properly researched and treated, we need to properly identify which symptoms belong to the illness and which belong to other comorbid or even unrelated conditions.

 

[Bluebell]

Lack of motivation is not among the currently known symptoms of ME/CFS. It is a known symptom of Major Depressive Disorder, which is often comorbid with ME/CFS. That doesn't make it a less important symptom for those who have it.

People who have a lack of motivation due to fatigue do not necessarily have depression. They can have any number of other illnesses that have nothing to do with mental health.

I am sorry that the medical study of what you folks have is still in the early stages, and that the name of the syndrome apparently doesn't describe it accurately.

Perhaps several different discrete illnesses are now described by the umbrella term of "CFS". For the people who have one sort, there is no reason to be touchy about people who have another sort, or who don't fit the symptom profile exactly. Bear in mind that I'm just looking at this as a relative outsider and do not mean to be flippant. I can see that it's a very important issue to people.

 

[SOC]

People who have a lack of motivation due to fatigue do not necessarily have depression. They can have any number of other illnesses that have nothing to do with mental health.

Certainly. I just used MDD as an example because it's an illness that is often comorbid with ME/CFS.

I am sorry that the medical study of what you folks have is still in the early stages, and that the name of the syndrome apparently doesn't describe it accurately.

Yup, it sucks big time. Don't get us started on the major problems that have been caused by the stupid name, or the idiots that gave us the stupid name.

Perhaps several different discrete illnesses are now described by the umbrella term of "CFS".

Without a doubt. If you add in the UK BPS school's collection, a substantial portion of the population with a ridiculously large array of illnesses can be classified under the heading "CFS".

For the people who have one sort, there is no reason to be touchy about people who have another sort, or who don't fit the symptom profile exactly. Bear in mind that I'm just looking at this as a relative outsider and do not mean to be flippant. I can see that it's a very important issue to people.

Not sure where you're going with this exactly, so forgive (or correct) me if I'm going down the wrong path.

I believe that the vast majority, if not all, of us here are referring to a ME/CFS as specific neuro-immune illness which can be identified by the CCC or the ICC definition. Both of those definitions include PEM/PENE as a defining symptom. It is highly likely that those definitions include multiple illnesses with similar symptoms. They do not include burn-out fatigue, temporary post-viral fatigue, MS fatigue, cancer fatigue, MDD fatigue, idiopathic fatigue without PEM/PENE, etc, etc, etc. While our list of symptoms is broad, the definition of the illness is not so broad as to make the illness indistinguishable from other illnesses with other forms of fatigue.

ME/CFS is an illness with multiple symptoms -- neurological, endocrine, and immune -- not directly related to fatigue. It is an entirely separate entity from the symptom "chronic fatigue", which is a symptom of many illnesses including our own.

Maybe making that distinction could be considered being touchy, but I don't think it is given the importance of properly defining the illness for research and treatment purposes.

 

[Misfit Toy]

Well, I am going to take this not so seriously. Not completely take a part the word motivation and make it into something it's not.

Motivation.

I have actually been thinking a lot about this word and I get it. I get what was trying to be said. I don't get why we are being lumped in with other somatic illnesses and depression.

I am an extremely motivated person. I started a business that worked well with my condition, made my own hours and I have done it alone, with no financial help. I worked my butt off. I try and try to do and go on vacations even though I get sick, I keep trying. I try supplements even though I bitch about them and their expense.

BUT, I do feel like I lack motivation at times. Of course. Who doesn't with this thing? And, to me, it's not a mix up of words...like energy or fatigue. I don't always feel as motivated about certain things...PERIOD. I am tired, yup...I am depressed from not feeling well, I feel a lack of brain power, enthusiasm and motivation. Plus, if you keep trying over and over and over and things keep going wrong, or you remain just as sick in spite of doing A, B and C...you will start to not have as much motivation.

I used to pursue every single remedy for this thing. I moved across country to try and get better. I had my amalgams out, had chelation for lead, did IV's of minerals and glutathione, had the Meyer's push done every week, bought a sauna, stuck to a yeast free diet for a year. Guess what? That motivation I had....it isn't as strong anymore. Why? Because I am sicker now than then.

That doesn't mean I am mental, or that anyone on here is mental if they say it. It means they are sick and tired and don't feel well and just aren't as motivated. And for those who say that they have lost a lot and that they are not depressed or angry....are you sure about that? Maybe it's denial....

Having said that, I have friends who suffer with major depression who don't have the motivation, or drive that I have. So, even with CFS, I am one step ahead.

To me, it is "motivation." I don't have the motivation that I used to. I feel worn out. And, that makes total sense after being ill for over half of my life and having given it my all and not getting very far.

 

[MeSci]

Does anyone find that the enforced requirement to undertake or complete a task creates excessive mental tension and stress? By enforced requirement, I mean when there is a need to do something (and/or deadline to do something), for whatever reason. This enforced requirement to do something is in contrast to when you yourself want to do some task, or have enthusiasm for doing the task.

I find that I can get involved in tasks that don't require much pre-planning or don't have a specific enforced goal or deadline. But when there is a specific goal or deadline to meet, suddenly there is huge mental stress involved. The stress does not come from the task itself, but from the need to adopt a goal-oriented disposition towards the task. But if I just amble on sweetly in my own time and in my own way, or under my own steam and enthusiasm, then there is no stress in performing tasks.

Yes - I cannot meet deadlines and do get stressed when demands are being made on me. This is for two main reasons:

The need to do things at the time and pace that my illness dictates, which others tend not to take into account.

Fear of being thought badly of, or letting someone down, because I cannot perform the task as quickly/as well as I would like, and as I once could.

It could be summed up perhaps as interference with the essential practice of pacing. It is not to do with the presence or absence of goals. I have a multitude of these, and work towards them in a careful, paced way.

 

[MeSci]

Without doubt. The psychogenic etiological theories of ME/CFS and its comorbid conditions have proved not only unfounded, but also disastrous for ME/CFS research.

Though that is not to say that psychogenic etiologies don't exist.

Many years ago, long before I acquired ME/CFS, I experienced a year or two of significant psychogenic depression caused by some unpleasant life events, and that experience was very different to the depression I get with my ME/CFS which it is clear to me is physiological in origin.

In the case of my psychogenic depression, I knew exactly what the psychological issues were that triggered the depression, and I instinctively knew that I had to work through those issues in my mind in order to overcome the depression. I set about working slowly through them, and as I did, the depression was indeed cured.

However, in the case of my ME/CFS depression, there were and are no psychological issues or trigger events whatsoever, and there is no doubt in my mind that this ME/CFS depression derives from physiologically causes, from a physical dysfunction in my brain chemistry.

I had depression in the period leading up to ME too. It was due to severe adverse life events, and I personally have no problem accepting that it can be part of the aetiology in initiating the illness, as there are at least two known mechanisms for this:

• Compromise of biological barriers such as the gut wall and the blood-brain barrier, thus allowing substances into the bloodstream that cannot normally enter. This in turn can, for example, lead to the production of autoantibodies.
• Impairment of the stress hormone system

These can both result in long-term illness, just as shooting someone can lead to long-term damage. But to use the shooting analogy, the gun is not being shot continuously, the bullet may have been removed, the wound sewn up, but there is still long-term damage, and it may need different types of treatment which do not need to look at the cause - just the current situation.

Yes - mood disturbances can have direct chemical causes, as anyone who has taken any legal or illegal mood-altering drugs knows. I have even had a couple of alarming attacks of acute depression on exposure to unidentified perfume chemicals. I went from sitting calmly with stable mood to sobbing uncontrollably, then minutes later wiping away the tears, with normal mood again, wondering what the %&$* had just happened.

 

[MeSci]

Why can't a lack of motivation be a possible symptom amongst the hundreds, if the very definition of fatigue is a lack of energy and motivation? I am sure that there are layers to this that I cannot possibly know. I'm just explaining my view.

Who says that the very definition of fatigue is a lack of energy and motivation? Energy - yes, but not (necessarily) motivation. Think about an athlete who collapses with fatigue and so fails to win - is s/he lacking in motivation? Hardly. For us it feels physically as though we are participating in high-level sport even when just trying to do everyday activities. Still motivated as hell.

No - there is, or should be, no stigma attached to mental illness or lack of motivation. It just gets in the way of correct diagnosis and treatment when it is applied to the wrong patients!

 

[MeSci]

Sounds like you have no motivational problems. Though I wonder if there is a difference between people with physical PEM, and those like myself with primarily mental PEM? In my case, too much thought or mental activity will exhaust my mind, and leave me unfit for any further mental tasks. In this exhausted state, I become a bit zombified, and this tends to make me sit around with my brain in neutral, doing nothing.


I have never looked at this before, but a search finds several studies:
A two-year follow-up study of chronic fatigue syndrome comorbid with psychiatric disorders
Depression in paediatric chronic fatigue syndrome
Psychiatric comorbidity and chronic fatigue syndrome
Patterns of Comorbidity in Chronic Fatigue Syndrome
Comorbid illness in women with chronic fatigue syndrome: a test of the single syndrome hypothesis

How depression was defined in each case I don't know.

I searched ME Research UK's huge database of research abstracts related to ME/CFS and found the following that refer to motivation:

Psychological adjustment of adolescent girls with chronic fatigue syndrome

http://www.ncbi.nlm.nih.gov/pubmed/11230616

Muscle performance, voluntary activation, twitch properties and perceived effort in normal
subjects and patients with the chronic fatigue syndrome

http://www.ncbi.nlm.nih.gov/pubmed/1998892

A discourse analytic study of ME/CFS (Chronic Fatigue Syndrome)sufferers' experiences of
interactions with doctors

http://www.ncbi.nlm.nih.gov/pubmed/20348363

Descriptors of Fatigue in Chronic Fatigue Syndrome

http://www.adaptech.org/cfichten/abDescriptorsOfFatigue.pdf

One which looks at differences based on type of clinic attended: A comparison of patients with chronic fatigue syndrome in two "ideologically" contrasting clinics

http://www.ncbi.nlm.nih.gov/pubmed/19440108

One which appears to find that there are motivational disturbances' in CFS:

Neural correlates of the chronic fatigue syndrome--an fMRI study

http://brain.oxfordjournals.org/content/127/9/1948.full.pdf

 

[ibenagnes]

"I wonder why we have such focus and motivation, compared to other conditions with mental or cognitive symptoms."

I think it is because with most other conditions we know how to treat it and what causes it and we get information on it. With ME it is all just a big question, therefore we seek information on our own.

 

[Bob]

People here (who officially have Chronic Fatigue Syndrome/ME) seem to have so many different constellations of symptoms. Why can't a lack of motivation be a possible symptom amongst the hundreds, if the very definition of fatigue is a lack of energy and motivation? I am sure that there are layers to this that I cannot possibly know. I'm just explaining my view.

I think that motivation can perhaps sometimes be a problem from some people with ME, as it can with anyone with a severe chronic health problem which causes them immense difficulties and challenges. But it's a secondary symptom, and not a primary symptom of ME: If it is experienced, then it comes about as a consequence of the primary symptoms. In other words, it does not define the illness. It can probably be a problem for some people with ME, at some points during their illness, especially if the chronic illness is causing stress and emotional problems. But it isn't a defining feature of the illness, and not everyone will experience it.

It's important to be careful not to describe ME/CFS as a motivational problem, and an illness with a lack of motivation at its core. Our interests and activities are limited by our disability. That's different to being limited by motivational issues.

Many of us have small worlds, limited in scope, but within our small worlds, we take an interest in what we are able to do.

the very definition of fatigue is a lack of energy and motivation?

I've never seen 'fatigue' described as a lack of motivation.
Fatigue usually describes a reduction in the efficiency of a muscle or organ, or physical tiredness or exhaustion.
As has been discussed, fatigue isn't necessarily a symptom for ME.
For ME, I think it would be more accurate to describe the symptom as an unusual 'fatigability': a tendency towards exhaustion, and a loss of muscle strength, rather than 'fatigue'.
The ICC replaces 'fatigue' with 'PENE' (Post Exertional Neuro-immune Exhaustion), which I think it more accurate and helpful.

 

[MeSci]

I've never seen 'fatigue' described as a lack of motivation.

Nor had I before, but I was too tired to search the thread properly for the origin of this claim yesterday. I was very motivated though!

Found it now - it was in one of Bluebell's messages:

http://www.nlm.nih.gov/medlineplus/ency/article/003088.htm

Maybe someone should have a word with MedlinePlus about this. I find them generally good but this is WEIRD!

 

[Hip]

If you Google search it, it seems that fatigue is often described as a lack of energy and motivation.

 

[lansbergen]

If you Google search it, it seems that fatigue is often described as a lack of energy and motivation.

If one is highly motivated half of the definitioon is missing. Does that mean in that case one can not have fatique?