Procrastination: Is it Necessarily Worse with Chronic Fatigue Syndrome and Fibromyalgia?

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I recently came across a quote from Pearl S. Buck on the Landmark Forum twitter feed. Landmark posts lots of - inspirational isn't quite the word - "transformational" tweets, I guess they are. The tweet was

“Don’t wait for moods. You accomplish nothing if you do that...get down to work.”
- Pearl S. Buck

The problem with ME/CFS is, of course, fatigue and PEM and the problems of going too far and really paying for it. Given the vagaries of PEM its hard to know at times when a symptom says "Stop" or when I can move forward. Sometimes its glaringly obvious but other times I'm not sure.

On the other hand we are still human and subject to all the foibles of being human, one of which includes, "waiting for the right moment" to do something, We as humans have a tendency to put things off - particularly big things or things we're afraid of doing.

The problem with ME/CFS is that you feel so crappy most of the time that those "right moments" - moments when we feel good and ready to take something on - are few and far between. So if putting things off is a problem when we're healthy I imagine that its even more of a problem when you have ME/CFS or FM.

?????
 
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Wayne

Well-Known Member
So if putting things off is a problem when we're healthy I imagine that its even more of a problem when you have ME/CFS or FM.
Ah yes, the perennial question--going back 50 years: "Am I just plain lazy?"

I asked myself that long before I ever heard of CFS (even though I had CFS symptoms). I can now see that my physical issues are what led to my "patterns of procrastination". More recently I read how head/brain injury (and/or trauma, and/or infection) affects our "will-power", which made a lot of sense to me.

I've come to sort of a peace with myself, "knowing" that my inherent nature is to excel at things, and to do whatever I have to do to achieve my goals. -- I was running 5 miles a day back in the 1960's, long before jogging became so popular. I did this so that I would have more stamina at the end of a long, grueling basketball game, so as to have a winning edge.

I believe excelling at whatever I put my mind to would have been a hallmark of my adult life had I not become ill (I likely would have become a chiropractor). Yet I have to admit that bits of human nature procrastination do crop up on occasion for me. Luckily, these days, I don't let it bother me! I think I'm learning to excel at being more patient with myself. :)
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
Ah yes, the perennial question--going back 50 years: "Am I just plain lazy?"

I asked myself that long before I ever heard of CFS (even though I had CFS symptoms). I can now see that my physical issues are what led to my "patterns of procrastination". More recently I read how head/brain injury (and/or trauma, and/or infection) affects our "will-power", which made a lot of sense to me.

I've come to sort of a peace with myself, "knowing" that my inherent nature is to excel at things, and to do whatever I have to do to achieve my goals. -- I was running 5 miles a day back in the 1960's, long before jogging became so popular. I did this so that I would have more stamina at the end of a long, grueling basketball game, so as to have a winning edge.

I believe excelling at whatever I put my mind to would have been a hallmark of my adult life had I not become ill (I likely would have become a chiropractor). Yet I have to admit that bits of human nature procrastination do crop up on occasion for me. Luckily, these days, I don't let it bother me! I think I'm learning to excel at being more patient with myself. :)
Wise words Wayne :)
 

Hip

Well-Known Member
At my worse stage of ME/CFS, around 6 years ago, I did have really significant and pathological problems with low motivation.

For example, if I'd spilt some coffee on my desk, the normal healthy response would be to get a cloth or some tissues to clean it up. This response would be so automatic, you would not even consider it as an issue. But I 'd often find myself just numbly staring at the situation, but somehow my brain would not engage in the simple task at hand (to clean up the desk in this example).

This was not because of fatigue, nor because of brain fog making the task too difficult to do; no, it was genuinely something amiss in the motivational circuitry of my brain. You clearly saw and understood what needed to be done, but the brain would not engage in the task. It was if there was something jamming the brain. It sounds weird, but that's how it was.

This same low motivation occurred in hundreds of very small and easy to do tasks. You knew what had to be done, you knew how to do it, and it was fairly easy and straightforward to do, but somehow the brain would not initiate and engage in the activity. It's hard to imagine this if you have not experienced it, but such pathologically low motivation can be a pretty significant condition.

It seems that the motivational circuits of the brain actually help coordinate and initiate the brain into purposefully tackling the task at hand; but without this coordinating prompt from the motivational circuits, the brain just sits there and does nothing, in a sort of numb state (even if the brain is very aware that the task needs to be attended to).

I became quite aware that I had low motivation, and realized it was a problem, but did not have a solution for it. You would not call my condition laziness, because I genuinely did not want to be like this, I wanted to find an answer to this problem, but for some years I couldn't figure out a solution.

However, by chance I discovered that low doses of pramipexole (half of a 0.18 mg tablet) worked wonders for boosting my motivation, and I found that when taking pramipexole, I'd spontaneously start doing things that needed to be done.

At the time, pramipexole was a really effective solution for me, because as anyone with ME/CFS knows, there always seems to be so much to do as an ME/CFS patient (new reports to read, new drugs or supplements to order online and then try out, emails to answer, topics to study, etc).

I was really in a hole with my ME/CFS at that time anyway, because my ME/CFS was becoming worse (moving towards severe), and I really wanted to try to find some treatment solutions that could hopefully halt the decline. But the low motivation just seems to numb and jam my brain, preventing me from engaging in purposeful activity. So in that period of my illness, pramipexole worked well, and helped me become more purposeful in my tackling of ME/CFS. I also found vitamin B2 helped with motivation.



Lack of motivation is slightly different to anhedonia (which I also suffered from). Lack of motivation means you do not tend to initiate into tasks and purposeful activity; anhedonia simply means that you don’t get the feeling of reward or satisfaction on completion of a task. Lack of motivation is due to problems in the motivational circuitry of the brain; anhedonia is due to problems in the reward system of the brain.

I should note though that my ME/CFS began shortly after viral meningitis, that quite significantly affected my brain, so this may be why I suffered from these problems of crippling low motivation and severe anhedonia. Generally, neither low motivation nor anhedonia are considered part of ME/CFS, though I guess some ME/CFS patients may experience these symptoms.


These days my motivation is reasonable; I get a reasonable amount done each day (within the limits of my brain fog and mental fatigue).

More recently, when I was experimenting with some Russian Staphylococcus alpha toxoid vaccine injections which I was hoping would improve my ME/CFS symptoms (so far they have not), I noticed that in the week or two after injecting the vaccine, I became much more motivated. Ideas or projects that I had in the back of my mind for years I would suddenly find myself engaging in. So somehow this vaccine was boosting motivation (and it also boosted my mood). The vaccine did not help with the brain fog or fatigue of ME/CFS, though.
 
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Wayne

Well-Known Member
However, by chance I discovered that low doses of pramipexole (half of a 0.18 mg tablet) worked wonders for boosting my motivation, and I found that when taking pramipexole, I'd spontaneously start doing things that needed to be done.
Hi Hip,

Thanks much for your remarkable post. I did a search on pramipexole, and discovered it's a dopamine agonist. I just happen to have book checked out from the library right now entitled, "Brain Longevity". In it, the author gives specific "recipes" for increasing certain brain neurotransmitters. Here's what he says about dopamine:

The primary nutritional building blocks of both neurotransmitters are the amino acids tyrosine and phenylalanine. To potentiate the action of these amino acids, folic acid, magnesium, and vitamins C and B can be taken.
Brain Longevity by Dharma Singh Khalsa M.D. with Cameron Stauth, page 213

I had an old bottle of phenylalanine which I hadn't taken in quite a while, and decided to take a 500 mg. capsule. I noticed it pretty promptly helped me with my unusually heavy stupor I'm experiencing this morning.

It gave me energy to do more research on how to increase dopamine levels, and discovered this article on an expensive supplement: Tetrahydrobiopterin (BH4): Its Role in the Body and Where to Buy It. From this article: "BH4 helps in the biosynthesis of the neurotransmitters serotonin, melatonin, dopamine, norepinephrine, epinephrine, and is important for the production of nitric oxide (NO)."

I read elsewhere that both the mineral zinc and caffeine can also raise dopamine levels, which could account for some of the heightened mental acuity while drinking coffee.

Thanks again Hip for your great post. I'm going into to see my Osteopathic doctor today, and will ask him about possibly getting a prescription for a trial of pramipexole. Would love to experience more natural motivation in my daily life.
 

Gabrielle6

Member
I would love to get help with this particular problem since it causes me a lot of grief. I'm beginning to write in my journal every night what I accomplished that day just so I don't feel like a slug. Most of the things I do are after 6:00pm because the day just doesn't get started early which disgusts me since in Cleveland it's 72F and we are expecting snow very soon. I used to love Indian Summer days but now they are filled with body pain.
I had encephalitis in the beginning and recently had a weird heart attack called Takosubo Syndrome where adrenelin probably causes the left ventricle to enlarge 3X. The recovery is almost over but brain fog, depression and fatigue made this another problem to get thru. It's the same when we get an adrenelin surge after a task and it makes us feel good enough to continue then be blasted with PEM for a week.

There are days when I get myself out only to hear a clerks voice and not understand a word he is saying. How strange is that?
 
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Hip

Well-Known Member
I'm going into to see my Osteopathic doctor today, and will ask him about possibly getting a prescription for a trial of pramipexole.
I should add that pramipexole worked well for me during that more severe period of my ME/CFS, boosting motivation and also boosting mood; but as my ME/CFS improved (likely as a result of my high dose selenium protocol I think), the dynamic in my brain seemed to change, and the very same dose of pramipexole started to have negative effects: it started to cause emotional weakening and frailty, created a feeling of mental unease, it reduced my desire to socialize with people, and its motivation and mood boosting effects disappeared.

So pramipexole worked well for me at the time when my motivation was pathologically low, but later as my health improved, it no longer worked, and started to have negative effects.

But this drug has been shown to improve motivation in Parkinson's disease, so clearly it has a motivation-boosting potential.


Both motivation and reward are linked to dopamine, though it's hard to find any clearcut rules of thumb about which dopamine receptors you need to target for increase motivation, though the dopamine D2 receptors in the nucleus accumbens come up. Here are some studies:

Here is a list of dopaminergic drugs and supplements.



Would love to experience more natural motivation in my daily life.
I think you hit the nail on the head with that phrase: "natural motivation". Motivation is a definitely natural and automatically-acting feature of the brain. You don't notice that you have this wonderful motivational circuitry in your brain until it goes wrong, and then you notice it by its absence. But when it is working, motivational responses to situations do occur naturally, spontaneously and moreover effortlessly.

In healthy people, we see differences in motivational levels, but I think this just comes down to genetic differences in the motivational circuitry of the brain. Highly motivated people sometimes present themselves as being people to look up to, because of their motivational drive, but it probably just comes down to the well-functioning motivational circuitry they were blessed with. My view is that motivation is a natural and automatic response that is actually effortless when it works properly.

In fact, this article and study expresses this nicely: Brain structure may be root of apathy. In this MRI study, that found that more apathetic, less motivated people actually made more effort in their brains when tackling tasks!

And this reflects my own experiences of pathologically low motivation, where it did require an enormous amount mental effort on my part to try to force my brain to engage in tasks that needed to be done. But now my motivational circuitry seems to be working a bit better, I more easily and spontaneously engage in tasks, without needing to exert much mental effort.

So in normal life, people with high motivation likely expend very little mental effort when initiating into a task, whereas for people whose brains are more apathetic, it takes a great deal of mental effort to engage in purposeful activity.

That finding sort of turns everything on its head: it may be the apathetic who are mentally making the most effort in life!
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
At my worse stage of ME/CFS, around 6 years ago, I did have really significant and pathological problems with low motivation.

For example, if I'd spilt some coffee on my desk, the normal healthy response would be to get a cloth or some tissues to clean it up. This response would be so automatic, you would not even consider it as an issue. But I 'd often find myself just numbly staring at the situation, but somehow my brain would not engage in the simple task at hand (to clean up the desk in this example).

This was not because of fatigue, nor because of brain fog making the task too difficult to do; no, it was genuinely something amiss in the motivational circuitry of my brain. You clearly saw and understood what needed to be done, but the brain would not engage in the task. It was if there was something jamming the brain. It sounds weird, but that's how it was.

This same low motivation occurred in hundreds of very small and easy to do tasks. You knew what had to be done, you knew how to do it, and it was fairly easy and straightforward to do, but somehow the brain would not initiate and engage in the activity. It's hard to imagine this if you have not experienced it, but such pathologically low motivation can be a pretty significant condition.

It seems that the motivational circuits of the brain actually help coordinate and initiate the brain into purposefully tackling the task at hand; but without this coordinating prompt from the motivational circuits, the brain just sits there and does nothing, in a sort of numb state (even if the brain is very aware that the task needs to be attended to).

I became quite aware that I had low motivation, and realized it was a problem, but did not have a solution for it. You would not call my condition laziness, because I genuinely did not want to be like this, I wanted to find an answer to this problem, but for some years I couldn't figure out a solution.

However, by chance I discovered that low doses of pramipexole (half of a 0.18 mg tablet) worked wonders for boosting my motivation, and I found that when taking pramipexole, I'd spontaneously start doing things that needed to be done.

At the time, pramipexole was a really effective solution for me, because as anyone with ME/CFS knows, there always seems to be so much to do as an ME/CFS patient (new reports to read, new drugs or supplements to order online and then try out, emails to answer, topics to study, etc).

I was really in a hole with my ME/CFS at that time anyway, because my ME/CFS was becoming worse (moving towards severe), and I really wanted to try to find some treatment solutions that could hopefully halt the decline. But the low motivation just seems to numb and jam my brain, preventing me from engaging in purposeful activity. So in that period of my illness, pramipexole worked well, and helped me become more purposeful in my tackling of ME/CFS. I also found vitamin B2 helped with motivation.

Lack of motivation is slightly different to anhedonia (which I also suffered from). Lack of motivation means you do not tend to initiate into tasks and purposeful activity; anhedonia simply means that you don’t get the feeling of reward or satisfaction on completion of a task. Lack of motivation is due to problems in the motivational circuitry of the brain; anhedonia is due to problems in the reward system of the brain.

I should note though that my ME/CFS began shortly after viral meningitis, that quite significantly affected my brain, so this may be why I suffered from these problems of crippling low motivation and severe anhedonia. Generally, neither low motivation nor anhedonia are considered part of ME/CFS, though I guess some ME/CFS patients may experience these symptoms.

These days my motivation is reasonable; I get a reasonable amount done each day (within the limits of my brain fog and mental fatigue).

More recently, when I was experimenting with some Russian Staphylococcus alpha toxoid vaccine injections which I was hoping would improve my ME/CFS symptoms (so far they have not), I noticed that in the week or two after injecting the vaccine, I became much more motivated. Ideas or projects that I had in the back of my mind for years I would suddenly find myself engaging in. So somehow this vaccine was boosting motivation (and it also boosted my mood). The vaccine did not help with the brain fog or fatigue of ME/CFS, though.
That lack of reward fits in very well with finds of basal ganglia dysfunction and reduced dopamine. Could pramipexole perhaps help with that?

I do think something is shutting down our ability to plan. I remember a startling instance when some transfer factor somehow cleared the fog away and I just naturally started planning and looking forward into the future. It was exhilarating!
 
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Cort

Founder of Health Rising and Phoenix Rising
Staff member
In fact, this article and study expresses this nicely: Brain structure may be root of apathy. In this MRI study, that found that more apathetic, less motivated people actually made more effort in their brains when tackling tasks!
That's a fascinating study. To me it says that people are apathetic because something has interfered with the connections in their brain. That makes tasks more effortful - and more effortful tasks mean more work and less reward.

'Using our brain scanning techniques we found that connections in the front part of the brains of apathetic people are less effective. The brain uses around a fifth of the energy you’re burning each day. If it takes more energy to plan an action, it becomes more costly for apathetic people to make actions. Their brains have to make more effort.
They could be talking directly about ME/CFS. Numerous studies have indicated that people with ME/CFS have to work harder to do a mental task than healthy people - so I imagine that this applies really well to ME/CFS.

So one lesson for people with ME/CFS and FM might be is that they have to train themselves not to rely on feelings of reward or good feelings to do tasks; i.e. they can't wait for the right moment - because in ME/CFS and FM those moments rarely occur anymore.

???
 

Hip

Well-Known Member
That lack of reward fits in very well with finds of basal ganglia dysfunction and reduced dopamine. Could pramipexole perhaps help with that?
I've just been Googling to try to answer this question, and found that the striatum, which is located in the basal ganglia, is "a center of reward and motivational signaling in the brain."

Then I found a couple of studies that indicate pramipexole can ramp up dopamine in the striatum. So that might well explain why I found pramipexole boosted motivation.



I do think something is shutting down our ability to plan. I remember a startling instance when some transfer factor somehow cleared the fog away and I just naturally started planning and looking forward into the future. It was exhilarating!
I think so too. I don't tend to plan much at all these days, and I used to be a pretty organized person.
 

Empty

Well-Known Member
I do not think procrastination can apply to those with ME. I think procrastination is a luxury of those who are healthy or a difficult and frustrating symptom of those who are mentally ill.

Can you define what you mean by procrastination? Examples I can think of for healthy people: instead of studying for an exam, procrastinating making snacks, cooking, cleaning the bedroom, going to the movies, getting the toothbrush out to clean the toilet.


Or instead of going to the gym after work, procrastinating by going to the pub to play snooker.

Planning is amiss because the disease is unreliable and fluctuates. Parts of us no doubt learn from the majority of times plans needed to be changed, cancelled or caused upset. Planning is often a useless function in a sick body no matter how much one wills it to be otherwise.

There is little ego joy (which is high currency in this society) because we don't get a "runners high" because we can't run we pace. Anyone get a pacing high? We expend so much energy doing little things in stages that there is not much powering through feel good factor. We often can't enjoy the fruits of our labour because there are none. Example: By the time the house is hoovered taking ten times as long as healthy people to do it, it is time to start it all over again and the vibration and noise of the hoover has caused pain and loss of energy.

A healthy person would feel good afterwards for a job well done and then invite friends over for an enjoyable social evening.

I think that is why many of us take delight in the little things, in the moment. A different source of joy.

Are people with ME procrastinating from going to the beach, on holidays, to the cinema? If people can't do the things that they love to do and have full motivation to achieve, then the cleaning and working examples that perhaps come under "chores" for some, are not even worth talking about.
 
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Hip

Well-Known Member
Very interesting blogs.

I like the following paragraphs from the first of those two blogs:
The striatum, which appears to be strongly associated with the fatigue produced in both ME/CFS and in IFN-administered hepatitis C patients, is heavily involved in motor control, motivation and decision-making.
Dopamine also determines the amount of ‘effort’ it takes to engage in a task or activity. Low levels of dopamine can result in high levels of effort being needed to engage even in simple tasks. To put it another way, dopamine promotes action – except when it’s not present, in which case fatigue and inaction is the rule.
And this paragraph from the second blog:
Stimulants such as amphetamines and dopamine reuptake inhibitors which increase dopamine release may be ineffective because innate immune activation is blocking dopamine synthesis.

Increasing dopamine synthesis (not enhancing dopamine release) is a more likely target in disorders like ME/CFS, and it’s to that we turn next.

If increased dopamine synthesis could be helpful in ME/CFS, then there is an interesting Russian drug called bromantane (Ladasten) that might be worth trying.

Bromantan works by up-regulating expression of the enzymes which synthesize dopamine (and it operates in the hypothalamus, striatum, ventral tegmental area, nucleus accumbens, and other regions). Ref: 1
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Very interesting blogs.

I like the following paragraphs from the first of those two blogs:



And this paragraph from the second blog:



If increased dopamine synthesis could be helpful in ME/CFS, then there is an interesting Russian drug called bromantane (Ladasten) that might be worth trying.

Bromantan works by up-regulating expression of the enzymes which synthesize dopamine (and it operates in the hypothalamus, striatum, ventral tegmental area, nucleus accumbens, and other regions). Ref: 1
Interesting drug! I think you as our ME/CFS pharmacist Hip :)
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I do not think procrastination can apply to those with ME. I think procrastination is a luxury of those who are healthy or a difficult and frustrating symptom of those who are mentally ill.

Can you define what you mean by procrastination? Examples I can think of for healthy people: instead of studying for an exam, procrastinating making snacks, cooking, cleaning the bedroom, going to the movies, getting the toothbrush out to clean the toilet.


Or instead of going to the gym after work, procrastinating by going to the pub to play snooker.

Planning is amiss because the disease is unreliable and fluctuates. Parts of us no doubt learn from the majority of times plans needed to be changed, cancelled or caused upset. Planning is often a useless function in a sick body no matter how much one wills it to be otherwise.

There is little ego joy (which is high currency in this society) because we don't get a "runners high" because we can't run we pace. Anyone get a pacing high? We expend so much energy doing little things in stages that there is not much powering through feel good factor. We often can't enjoy the fruits of our labour because there are none. Example: By the time the house is hoovered taking ten times as long as healthy people to do it, it is time to start it all over again and the vibration and noise of the hoover has caused pain and loss of energy.

A healthy person would feel good afterwards for a job well done and then invite friends over for an enjoyable social evening.

I think that is why many of us take delight in the little things, in the moment. A different source of joy.

Are people with ME procrastinating from going to the beach, on holidays, to the cinema? If people can't do the things that they love to do and have full motivation to achieve, then the cleaning and working examples that perhaps come under "chores" for some, are not even worth talking about.
I grant that the less energy you have the less need there is to talk about procrastinating. I certainly have enough energy to put off things I know I should be doing or would even benefit from doing. That I think is simply part of the human condition.
 

ShyestofFlies

Well-Known Member
I feel stuck in this one way... If I push myself now, I will pay for it tomorrow.


But even if I don't push myself, I may feel worse tomorrow too.


Every day is potentially going to be followed by a worse day, and I potentially could lose all the independence I have to do basic tasks I currently handle myself- getting water, using the bathroom, showering occasionally- let alone things I enjoy.


While I do procrastinate on crash days, my problem is is for months I have had maybe 2-3 days that weren't severe crash days. They weren't "me" before I was sick either. They were my baseline, new-normal, worse than before sick since I started progressing.

I don't know what to do it comes down to, if it has to be done, it will eventually. It really makes you learn quickly what "necessary" really means in the grand scope of things.
 

Aiden Wilson

New Member
No one can motivate you to take control of your life. But I would add that in order to run a marathon you need to take the first step and then the second step and then third. Small actions, built up over time, reap massive rewards. Do not try to heal yourself overnight. It won’t happen. There is not magic pill. Believe me, I tried EVERYTHING I could with the belief that maybe something would finally work and I would wake up the next day healed.
Motivate yourself to success. Go to lectures such as motivational speakers, here is one of them Yossi Ghinsberg http://ghinsberg.com/leadership-speaker/. My friend attended the sessions, and began to live very differently.
The key is to not try fighting Depression on your own. Depression is debilitating demotivating, and degrading to you. When you feel unmotivated, remind yourself that is the depression. It's not called fighting Depression for nothing. It's a mental, physical, and emotional (and sometimes spiritual) battle that we must face and fight every day, all day long.
 
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Abrin

Well-Known Member
My two cents on the matter, is that it isn't so much procrastination but because we are forced not to move to try and keep PEM under control that the inertia from that is even harder to break than it is for a healthy person.

@Cort I thought you might find this article interesting. I read it years ago and it definitely got me thinking about inertia and how it relates to illness.

https://www.psychologicalscience.org/news/were-only-human/when-patients-do-nothing-illness-and-inertia.html#.WPn5cme1upI
 

Abrin

Well-Known Member
I just clicked on the dopamine link from my prior post, and discovered this list on ways to increase dopamine levels (and hopefully motivation).

Changing Your Dopamine Levels

Increasing Dopamine

Thanks for this list! I wasn't aware that Modafinil increases dopamine.
 

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