Motivation and ME/CFS

[Hip]

A Norwegian study ... found that "individuals suffering from CFS/ME appear to be much more active in their use of online discussion forums than sufferers of other somatic or mental health conditions"

This is very interesting. I was not aware of this Norwegian study, but I already had the distinct impression that, compared to patients with other diseases, ME/CFS patients are much more interested in reading, learning about, and discussing their condition. And I get the impression that ME/CFS patients have a higher degree of focus, drive and motivation when it come to seeking out, and then testing out, treatments that may help.

I wonder why we have such focus and motivation, compared to other conditions with mental or cognitive symptoms. In a way, our behavior is paradoxical, because in other areas of our lives we seem to have considerably less motivation, due in part to the fatigue and brain fog that make participation in life's regular activities difficult, but probably also because we may have lost some of the executive function of the brain,ᐞ which underpins motivated behavior.

So why is it that we are so well motivated to tackle ME/CFS and to improve our health circumstances, when we are distinctly under-motivated when it comes to involvement with life's activities in general? That is something I have asked myself more than once. No doubt one answer to this question is that it make perfect logical sense to focus your efforts on the most important issues and obstacles in your life, which in our case is ME/CFS. This is analogous to someone who is in dire financial circumstances focusing most of their energy on earning money, as this is the most appropriate action to take in the circumstances.

But there may be other reasons for the strong focus ME/CFS patients have on bettering their state of health. Introspectively, I sense that my own focus on improving my ME/CFS uplifts my mood: that is to say, pinning my hopes on some new drug or supplement that I plan to test out keeps me optimistic, and this optimistic state makes me feel better. Of course, every so often I do find a drug or supplement that helps me a lot, so this focus on improvement does pay dividends; but in addition to these dividends, the sense of hope that this focus provides is in itself beneficial.

And when it comes to participation in online forums such as Phoenix Rising, I feel that this actually can give a much needed sense of purpose to life. Such participation makes me feel that I am playing an (albeit small) role in the fight against ME/CFS through my efforts in helping and advising others with ME/CFS on this forum, and through the process of learning more about ME/CFS from others, as well as partaking in discussions about ME/CFS, by contributing to the large repository of valuable tips and information on ME/CFS that the PR forum has become, and, by all these actions, helping to raise general awareness of ME/CFS.

 

[Valentijn]

So why is it that we are so well motivated to tackle ME/CFS and to improve our health circumstances, when we are distinctly under-motivated when it comes to involvement with life's activities in general?

Motivation? Seriously?

ME patients do not lack motivation. We are physically and often cognitively disabled. We do the best we can with completely inadequate resources. We put so much effort into "improving our health circumstances" because without that improvement we are stuck at home unable to work, or shop, or sit upright for long, or even watch the damned TV.

Either we find better ways to deal with things, or we're stuck with a lot of pain and disability. It's a matter of absolute necessity, not "motivation".

 

[Hip]

ME patients do not lack motivation.

I noticed a huge reduction in my own motivation since getting ME/CFS. And it is not just me that experiences low motivation, as the following article indicates: Low Motivation With Fibromyalgia & Chronic Fatigue Syndrome.

At one stage, when my ME/CFS was really bad, I noticed that I would not engage in tasks at all. But paradoxically enough, I was motivated to try to remedy my low motivation! I serendipitously discovered that taking very low doses of the drug pramipexole greatly boosted my task engagement, and I used to take this drug regularly for that purpose.

 

[MeSci]

I notice a huge reduction in my own motivation since getting ME/CFS. And it is not just me that experiences low motivation, as the following article indicates: Low Motivation With Fibromyalgia & Chronic Fatigue Syndrome.

At one stage, when my ME/CFS was really bad, I noticed that I would not engage in tasks at all. But paradoxically enough, I was motivated to try to remedy my low motivation! I serendipitously discovered that taking very low doses of the drug pramipexole greatly boosted my task engagement, and I used to take this drug regularly for that purpose.

I am very puzzled by this page and your own belief that low motivation is characteristic of ME, FMS and CFS, Hip. It is the complete opposite to how I am personally, and how the vast majority of people with these conditions appear to be to me. Low motivation can be a characteristic of depression, with which I am personally familiar having suffered from it at times in the past, but which I definitely do not have now. Depression can be a consequence of many chronic illnesses, but I don't think it is any more prevalent in ME than in other conditions, and quite possibly less so.

Most sufferers I encounter have too much motivation in relation to what their bodies can actually do - myself included. We have to constantly rein ourselves in to avoid overexertion and consequent PEM.

Mark's article refers to a reason for our high participation in forums and motivation to help ourselves and each other - it is the lack of help from the usual sources: doctors, family, etc., which is so severe with this condition. There is a huge void to fill.

 

[Hip]

MeSci Valentijn

Perhaps you are right that low motivation is not a normal part of ME/CFS. Low motivation certainly does not figure in the official symptoms of ME/CFS (such as the Canadian consensus definition), so possibly low motivation only affects a relatively small number of ME/CFS patients. Perhaps low motivation predominantly affects the ME/CFS patients who also suffer from depression, a common comorbid condition in ME/CFS (which I do in fact have myself, though I treat my depression with very low dose amisulpride, which works reasonably well).

However, you have to be careful to distinguish motivation from dreaming or yearning about what you would do if you were healthy, which is not in itself motivation. Motivation is related to how readily you engage in actual tasks.

In any case, I find that I rarely engage in tasks that I was once very good at — tasks such as properly filing my correspondence (I used to very neat and tidy highly organized when it came to filing things), or tidying or organizing anything. Yet I will happily spend days online researching the biochemistry of ME/CFS, or researching treatments for ME/CFS; and of course posting on forums such as this. So paradoxically I find my motivation is very strong in some areas, but has vanished in others.

 

[Firestormm]

Yeah I am afraid that I don't agree either Hip and I'm not just saying that to make myself seem cool. I already know I am cool

I have not really suffered from a lack - unless I was hit with depression - my problem has been a lack of ability to complete. I would often get involved to the extent that it was outside of the realm of my reduced abilities. I think that has a lot to do with having a 'fluctuating' condition that is hard to understand and plan for to be fair.

For a long time I hadn't learned to accept my limitations - so basically I was trying too hard and when I 'failed' I took it to heart. Still do I suppose but the tasks I am motivated to embark upon are more realistic I would say; and less ambitious than tasks I would have embarked upon before.

Am still motivated. Too damn motivated. I need if anything to curb my enthusiasms and restrain myself

It was harder to get that traction when I was confined to bed and much more sick that I am today. But I don't think it had anything to do with some part of my brain. Executive Function affects me now with decision making - I do find it harder to make decisions as decisively as I once did; but that's not always a bad thing.

 

[Valentijn]

Perhaps low motivation predominantly affects the ME/CFS patients who also suffer from depression, a common comorbid condition in ME/CFS (which I do in fact have myself, though I treat my depression with very low dose amisulpride, which works reasonably well).

Can you cite any studies using decent questionnaires (ones which don't conflate physical or cognitive limitations with depression) showing that depression is "common" in ME patients? I have yet to see one, yet this statement keeps getting thrown around.

 

[MeSci]

MeSci Valentijn

Perhaps you are right that low motivation is not a normal part of ME/CFS. Low motivation certainly does not figure in the official symptoms of ME/CFS (such as the Canadian consensus definition), so possibly low motivation only affects a relatively small number of ME/CFS patients. Perhaps low motivation predominantly affects the ME/CFS patients who also suffer from depression, a common comorbid condition in ME/CFS (which I do in fact have myself, though I treat my depression with very low dose amisulpride, which works reasonably well).

However, you have to be careful to distinguish motivation from dreaming or yearning about what you would do if you were healthy, which is not in itself motivation. Motivation is related to how readily you engage in actual tasks.

In any case, I find that I rarely engage in tasks that I was once very good at — tasks such as properly filing my correspondence (I used to very neat and tidy highly organized when it came to filing things), or tidying or organizing anything. Yet I will happily spend days online researching the biochemistry of ME/CFS, or researching treatments for ME/CFS; and of course posting on forums such as this. So paradoxically I find my motivation is very strong in some areas, but has vanished in others.

Oh, I well know the difference, Hip! I don't sit around wishing. I am a doer. As much as I ever was. For example, today I was putting up blinds in my new conservatory despite the blazing heat (well, partly because of it - to shut some of it out!), and wanted to carry on with putting up curtains at the other windows, without a break, but had to force myself to take breaks. I am absolutely champing at the bit to finish, and this is how I am most of the time, and how most people I have encountered with ME and CFS seem to be.

I find it enormously frustrating to be physically able to do so little, and this appears to be typical. Of course, there will always be exceptions. I found it strange that all the people commenting on the 'About' article you linked to seemed to be agreeing with it. I wonder whether there was any selective publishing there?

 

[Bluebell]

[Note: This comment was originally posted here when the surrounding posts on motivation were within a different thread.]

I wonder if this lively discussion about motivation might be taken to a new thread, since the present thread is for introducing the Univ. of Nottingham study and its researchers, and for forum participants' comments and questions about the study.

 

[Valentijn]

I am absolutely champing at the bit to finish, and this is how I am most of the time, and how most people I have encountered with ME and CFS seem to be.

Same here. I tend to push too much, without realizing how much I'm pushing until it's too late. I've started using a pulse oximeter to see if my heart rate "allows" me to do something, and I seem to have improved functioning after a few days of being strict with myself about it. But it's extremely frustrating to have to wait hours (or days) to get stable enough to do something I really want to do.

So plenty of motivation, with a healthy dose of caution to restrain me.

 

[Hip]

For example, today I was putting up blinds in my new conservatory despite the blazing heat (well, partly because of it - to shut some of it out!), and wanted to carry on with putting up curtains at the other windows, without a break, but had to force myself to take breaks. I am absolutely champing at the bit to finish, and this is how I am most of the time, and how most people I have encountered with ME and CFS seem to be.

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.

Can you cite any studies using decent questionnaires (ones which don't conflate physical or cognitive limitations with depression) showing that depression is "common" in ME patients? I have yet to see one, yet this statement keeps getting thrown around.

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.

 

[Valentijn]

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

Therein lies the problem.

DSM IV is used in the first study. If a symptom isn't attributable to a physical illness (very much open to interpretation), it can be used to indicate a psychiatric illness. Without access to the full text, it's impossible to know how they were interpreting symptoms - and even with full text, I've yet to see any ME study using the DSM IV giving that much detail.

The 2nd one uses Hospital Anxiety and Depression Scale, which isn't as horrible as some of the questionnaires. But you still have several questions which will score points due to purely cognitive or physical limitations. That study (at least in the abstract - full paper costs money) also lacks comparison to either healthy or other chronically ill groups. This is the strongest of the bunch, but is probably using an Oxford definition, so the relevance to ME patients is likely minimal.

The third one isn't a study, but rather correspondence regarding a study. It looks like that study uses DSM III to diagnose, so it's really impossible to know how ME symptoms were interpreted.

The fourth link refers to a study (the one in the fifth link) where DSM III was used.

Due to the prevalence of dodgy research in the area, I think it's very important to read those studies carefully, rather than taking the abstracts at face value. Many of the questionnaires are completely inappropriate for patients with a chronic illness. And they certainly should be assuming that the symptoms might be of completely physiological origin, if they want to convince anyone that there's a common problem with psychiatric comorbidity.

 

[rosie26]

I suffer badly from lots of relapses because I didn't restrain myself enough. There is so much to do , the list is long of things I want to do, and things that need to be done. And there I am having to lay down and rest !! I have also had to restrain my frustration and anger because of this.

I love Phoenix Rising. If only I had known of it in my early severe years, it would have helped me get through and helped me work my illness out better. As it is a very lonely, alone illness, with unbearable symptoms that take you to the place of wanting to take your life. That is how seriously bad ME is. Their are some doctors who really do try their best, but I don't think they have any idea of the depths of this illness. ? I think they would be deeply shocked if they knew what we go through. Love to all

 

[Hip]

And they certainly should be assuming that the symptoms might be of completely physiological origin, if they want to convince anyone that there's a common problem with psychiatric comorbidity.

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.

 

[rosie26]

I know what you mean Hip about the difference between psychological and physiological depression.
I learnt this difference about 2 years in to my ME.

Something happened to me one day and I realized that the origin was not coming from my mind. And this is what I concluded. I think we get two types of depression ?

1) Their is an ME depression that does not start in the mind. It feels like chemicals have been released in the body in too high doses or not enough. (physiological origin)
2) And their is also a depression that comes with having to live with a severe physical illness and trying to cope with the day to day. I find this depression is relieved easily when my physical symptoms ease.

 

[Bob]

Important to make sure we are all talking about the same thing, as there are various definitions of 'motivation' and the meaning is a bit of a woolly.

One definition of Motivation is: The general desire or willingness of someone to do something.

I think many/most of us have an extreme desire to do the things that we can't do.
But do we have a willingness to do the things we can't do, considering our restrictions?

For example, I desire to go for a swim, but I'm not willing to because I feel exhausted, and it will exacerbate my symptoms, and possibly cause a long-term relapse.

I suppose we are talking about how much 'interest' and 'engagement' we have in doing a potential activity, if we were to disregard our physical and cognitive barriers.

 

[heapsreal]

i think it comes down to having an illness that isnt believed or an illness that is just a form of depression that requires antidepressant get/cbt. I think our motivation is that deep down we know these arent the issues, but are searching for answers.

Maybe motivation is being mixed up with energy???

I would call it motivation when one searchers out some answers, saves it in his favourites then goes back into his favourites a couple of times a day to read it just so they can absorb it and take it in, where a normal person would take it in the first time its read. Then its done with many other pieces of information and then shared across the internet with others with the same illness. Its motvation to find answers that does this, not energy. Our motivation works slowly and awkwardly bumping along.

 

[ukxmrv]

My motivation is fine and I can spend time focussing on other similar things on the internet, like researching my family tree with equal absorption.

The limits for me are on using my limited physical strength that affects both my body and my brain.

My other-half says I would have made a good detective and as a child I loved sitting with encyclopaedias so I enjoy these skills still when looking at ME using modern methods.

 

[WillowJ]

I think another thing to consider is whether it's possible to mistake a need for rest and recuperation for lack of motivation. It can be difficult to "engage in tasks" when sick, debilitated, and in need of rest.

I think because when we were healthy the behaviour of staying on the sofa, lost in a haze, could be lack of motivation, we tend to classify it the same way now (or as laziness or whatever). But (if I may generalize) it's actually our bodies forcing us to try to manage our disease.

However, you have to be careful to distinguish motivation from dreaming or yearning about what you would do if you were healthy, which is not in itself motivation. Motivation is related to how readily you engage in actual tasks.

So I'd revise and say for a sick person who doesn't actually have the capacity, this 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.

 

[heapsreal]

I think another thing to consider is whether it's possible to mistake a need for rest and recuperation for lack of motivation. It can be difficult to "engage in tasks" when sick, debilitated, and in need of rest.

quote]
exactly.