For People With Chronic Fatigue Syndrome, More Exercise Isn't Better

antares4141

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I just sent this to a "friend" who has been for 23 years now nagging me to exercise more.

He just did it again yesterday.

Despite my patiently explaining at least 50 times over 23 years that this over simplified advice doesn't help people with CFS. I have explained repeatedly if we could simply exercise our way out of this illness we would be better now because there is not one person who hasn't tried this already.

Anyways it is a very easy read for those that have trouble comprehending very simple concepts.

And for the doubting Thomas's out there it sites the CDC has quit recommending this horrible advice.

https://www.npr.org/sections/health...ic-fatigue-syndrome-more-exercise-isnt-better
 
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for the doubting Thomas's out there
Its always stunningly shocking when we must face the complete disconnect that exists in some people. Obviously your friend is not listening, actually listening. Probably best to forgive them.

At times, I wonder if people are just actually slightly more advanced versions of sheep. Don't we know our bodies? The ones' we find ourselves occupying?

If your in one of our bodies, you quickly discover what happens when you do a bit more physically, or mentally...than your supposed to/used to. You decide to simply clean half the bathroom and you will pay the next day, and the day after, for that event. We can feel the damage to our bodies from accumulations of overdoing it...when we don't PACE and rest up, we fall over. The symptoms intensify, grow in number and duration and intensity.

Just like the sun rising in the east. If somebody told you- Nah, it rises from the north- don't believe it. Believe the truth you see before you.

I've had to give up the notion that any friends will ever really understand or get what this experience is like.
 

ljimbo423

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I just sent this to a "friend" who has been for 23 years now nagging me to exercise more.

He just did it again yesterday.

Despite my patiently explaining at least 50 times over 23 years that this over simplified advice doesn't help people with CFS. I have explained repeatedly if we could simply exercise our way out of this illness we would be better now because there is not one person who hasn't tried this already.
I've been trying to exercise my way out of this illness for 43 years. I first developed ME/CFS at 18 and I'm now 61. I exercise as much as I can but that consists of walking now. I spent many years jogging. It never stopped my ME/CFS from worsening.

As I'm sure you know, trying to exercise our way out of this disease is at best painful and a waste of time. At worst, it can push our condition to severe. Thanks for the link.
 
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Think of our pets for example
The Netflix movie- about the man who is Friends with an Octopus...well it happened to the octopus, she experienced intense sickness behavior after an injury. There she was- so precious, so not functioning.

I'm thinking of analogies, should the opportunity ever arise to once again explain- what this feels like. But you know when you go to start the car, turn the key, and the starter has a seizure...thats us. Keep trying to start your car, but its not starting..its emitting a horrible sound, and the starter is being damaged. (not a mechanic, husband says the starter would be damaged if you kept trying that).

Would your friend suggest the car will drive, down the street, despite this issue?
 

antares4141

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It's just too ridiculous for words. Think of our pets for example. Would dogs if they were feeling at our level start chasing around after a ball. I don't think so. They would instinctively do what their body was telling them to do.
How many people do you tell to exercise their way out of Parkinson's, or MS, or Lupus, or heart disease, or flue, or dengue fever, or cholera or covid19?

And you can't call people out on this because they will deny the way they couched the advice was meant as a cure. Like for instance they might say the same thing to someone with heart disease or lupus or MS in the context that whatever little bit you may be able to do will be beneficial in other ways than as a cure or treatment.

But I have never had it couched to me in that way. It's always with the attitude I am not willing to "do the work" so I must want to be sick.

It's a type of victim blaming. Just like when somebody tries to guilt you by giving you some type of horse shit medical advice. "well I guess you are not willing to do the work" As if they are an expert and just gave you some type of solution.

Frustrating! And they always act as if they were selfless, their intentions were as pure as the wind driven snow and that you are being ungrateful.

And they do it over and over and over as if it was the first time they ever gave the suggestion. Not a psychologist but suspect this is a hallmark indicator of abuse.
 

antares4141

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How many people do you tell to exercise their way out of Parkinson's, or MS, or Lupus, or heart disease, or flue, or dengue fever, or cholera or covid19?

It's a type of victim blaming. Just like when somebody tries to guilt you by giving you some type of horse shit medical advice. "well I guess you are not willing to do the work" As if they are an expert and just gave you some type of solution.

.
I just wanted to make the point that I never felt this way about anyone on this list who shared any of the things they think helped them.

What I am talking about is when someone who has no clue what it's like to walk in my shoes tries to guilt me with some type of obvious advice like "keep a food diary" which I have already done but they want credit for,

Or highly generalized advice like "take vitamins" or "eat healthy".

The context always implying something I am doing or not doing to myself out of laziness, or stupidity, or lack of will to get better is why I am sick.

It's not always generalized or obvious advice though. Many times these types will give me very specific advice again with the attitude "I don't want to do the work". Something like "try the keto diet" which requires huge sacrifices on my part, cost, varying degrees of risk depending on the advice with very little chance of any benefits. Certainly no evidence for that, And no cost/work/risk/waste of resources on the part of the person giving the advice.

It's always repeated over and over so that they can make me repeatedly over and over justify my decisions and for them to maximize the satisfaction of thinking they are somehow smarter and wiser, morally superior than I.

And ironically these same people will try to take credit for any improvements I might or might not have made over the years with all the different things I, not them, have "done the work" for.

I've even seen people online suggest that we should pay for the biomedical research ourselves.

It's almost like we have a target on our back that says "kick me"
 

gbells

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How many people do you tell to exercise their way out of Parkinson's, or MS, or Lupus, or heart disease, or flue, or dengue fever, or cholera or covid19?

And you can't call people out on this because they will deny the way they couched the advice was meant as a cure. Like for instance they might say the same thing to someone with heart disease or lupus or MS in the context that whatever little bit you may be able to do will be beneficial in other ways than as a cure or treatment.

But I have never had it couched to me in that way. It's always with the attitude I am not willing to "do the work" so I must want to be sick.

It's a type of victim blaming. Just like when somebody tries to guilt you by giving you some type of horse shit medical advice. "well I guess you are not willing to do the work" As if they are an expert and just gave you some type of solution.

Frustrating! And they always act as if they were selfless, their intentions were as pure as the wind driven snow and that you are being ungrateful.

And they do it over and over and over as if it was the first time they ever gave the suggestion. Not a psychologist but suspect this is a hallmark indicator of abuse.
I don't get this lately but I recall when my grandmother was alive she told me on the phone "don't you think it's time you go back to work (from ME)?"

At that time I was ME activity scale 2 living in public housing, fighting to get disability with constant daily headaches, difficulty walking due to painful feet, depression, noise and light sensitivity, cognitive dysfunction, anxiety and of course fatigue.

She thought I was just lazy. My last job in 2008 as a CNIM surgical intraoperative neuromonitorist paid $72k/yr and I was terminated due to ME with no disability insurance to support me. I was draining my savings and had no income while I fought four years to win disability which was not awarded for ME but for a psychological diagnosis.

I said, "Well don't you think it's time for you to cure your diabetes? It's the same thing."

Actually curing her type 2 diabetes would be far easier. All she needed to do would be to eat healthier and exercise instead of being a blob watching tv.

She died and left me practically nothing despite me having been disabled for several years.

A few years ago I did some physical therapy to see if it would help the ME. It accomplished nothing except to increase my muscle strength about 20%. No improvement with cardiovascular parameters and endurance.

This is a real illness and you can't magically fix mitochrondria with exercise.

Be strong and defend yourself.
 
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Strawberry

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I spent many years jogging. It never stopped my ME/CFS from worsening.
Count yourself lucky. A very short hike to the beach and back nearly did me in. 225 feet elevation drop. I was able to do house chores and gardening before that. I even painted my mew house and moved in. But now? I can only stand a couple minutes and walk a block if it’s flat.
 

antares4141

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I haven’t been able to read the replies, but one fact most people don’t want to remember is that most of us exercised ourselves into getting worse. My oldest brother tells me lots I just need to exercise more. I guess he has short term memory? The more we push the worse we get. They refuse to see that.
It is frustrating. I wish there was a way People with CFS/ME could shame someone for repeatedly doing this.

It's one thing when a person does it once and someone explains to them that they are sick and cannot exercise any more than a person with a 103 degree temperature. When somebody does it more than once I think this clearly constitutes abuse.

A lot of the time the issue is inserted into a conversation by inuendo which makes it that much more difficult to address. But no less damaging for someone to have to endure this. Especially when it is repetitious.

I think it's partially my fault for not being confrontational when it is done to me. Many times I just let them get away with it, others I will explain why I can't do this but 99% of the time stop short of calling them an abuser.
 

antares4141

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I don't get this lately but I recall when my grandmother was alive she told me on the phone "don't you think it's time you go back to work (from ME)?"

I said, "Well don't you think it's time for you to cure your diabetes? It's the same thing."

Actually curing her type 2 diabetes would be far easier. All she needed to do would be to eat healthier and exercise instead of being a blob watching tv.

She died and left me practically nothing despite me having been disabled for several years.

A few years ago I did some physical therapy to see if it would help the ME. It accomplished nothing except to increase my muscle strength about 20%. No improvement with cardiovascular parameters and endurance.

This is a real illness and you can't magically fix mitochrondria with exercise.

Be strong and defend yourself.
It is interesting how many times the people least qualified to be criticizing others are the ones that come out of the woodwork.

It certainly does seem like the disease affects us all the way down to a cellular level. I feel it just pushing myself a little bit causes me to have to take a death nap in the middle of the day. It might be the next day but like clockwork when I push myself I pay for it. So much so that at 61 I have virtually no mussle left. And having brought my bmi below 25 very little fat. But what little meat I have left on my bones is mostly fat.

It would be nice if some experts in metabolic disorders could be hired to try to figure it out. I have been sick 23 years and it never seizes to amaze me how somebody can be so sick but the medical profession can't figure it out.

The same thing happens when you have a fever. I wonder if there is some type of mechanism your body implements to get you to conserve energy and stay still so it can fight off invaders.

Maybe if we could identify what causes a person with flue not to be able to get out of bed we could identify what it is in CFS/ME that does this. Or at least identify it as a manifestation of the disease so people can be diagnosed.

It would help if some money were thrown at the problem more commensurate with what we see with other major diseases. In my opinion the reason this isn't happening is the preconceived notions our relatives and friends have extends to the people making the desisions how this money is spent.

Sorry for the way you were treated.
 

Strawberry

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I wish there was a way People with CFS/ME could shame someone for repeatedly doing this.
My thought is once we get a cure or decent treatment that brings us up by 25%.... Then the news media and doctors all eat crow publicly..... Then we can say told you so. My brother knows damn well I used to work my ass off While sick and fatigued. I don’t think of it as abuse, but ignorance. But you might be right.

The ironic thing about my oldest brothers ignorance? He was starting to complain of issues that sounded similar to me. Doctors investigated and he got a 5 valve bypass this spring. Now he’s back to hard work again, being mindful he doesn’t break his ribs. So HE can have heart problems that cause weakness and heavy breathing, but I am lazy... :confused:

The same thing happens when you have a fever.
Cant tell you how many times over my 25 years I’ve gone home sick with fever. Only to not be sick the next day. Well, not sick more than my normal sick... We do get fever from exertion.
 

antares4141

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My brother knows damn well I used to work my ass off While sick and fatigued.
That is actually why I think of it as abuse. How can someone who knows you and how hard you worked say something like that. You just one day decided you enjoy laying in bed letting all your desires to succeed, hobbies, social life, and ambitions pass you by? I don't know how anyone who knew me before I got sick can believe this.

Doctors investigated and he got a 5 valve bypass this spring.
Perfect example of an invisible type of illness and why it's so absurd to go to the default position we are lazy and are doing it for secondary gain. Another poignant example of why your brother of all people should understand!

Cant tell you how many times over my 25 years I’ve gone home sick with fever. Only to not be sick the next day. Well, not sick more than my normal sick... We do get fever from exertion.
My PEM when I push extra hard many times feels a lot like I am coming down with flue.
 

gbells

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It would be nice if some experts in metabolic disorders could be hired to try to figure it out. I have been sick 23 years and it never seizes to amaze me how somebody can be so sick but the medical profession can't figure it out.
Currently and in the past the establishment uses the lack of information to fight disability insurance claims. If they research it then they further substantiate the severity which works against the claim denials. That creates a huge disincentive to fund research at the National Institutes of Health which explains why other diseases with fewer cases receive more funding.
 

antares4141

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Currently and in the past the establishment uses the lack of information to fight disability insurance claims. If they research it then they further substantiate the severity which works against the claim denials. That creates a huge disincentive to fund research at the National Institutes of Health which explains why other diseases with fewer cases receive more funding.
Yep, and it seems just a few people in high places have the power to do this to us. We need to hold them accountable. But we can't do that until we can prove the illness is real. As long as they can keep this from happening by preventing legitimate research aimed at finding a universally accepted means to diagnose we're screwed!

It's not just disability claims. Law suits, liability, indictments, the black eye it would give all the institutions and industries and people behind them. It's not likely we will see a diagnosis anytime soon.
 
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gbells

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Yep, and it seems just a few people in high places have the power to do this to us. We need to hold them accountable. But we can't do that until we can prove the illness is real. As long as they can keep this from happening by preventing legitimate research aimed at finding a universally accepted means to diagnose we're screwed!

It's not just disability claims. Law suits, liability, indictments, the black eye it would give all the institutions and industries and people behind them. It's not likely we will see a diagnosis anytime soon.
They would only do it if there was a mass protest and this went viral outside the ME community. That would force the issue. Otherwise they just underfund it and pretend that they are addressing it.
 
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My PEM when I push extra hard many times feels a lot like I am coming down with flue.
Yes, I can't tell the difference, I wish I could get a PCR test and know for sure, but there's a difference between the post exertional malaise I get from a 1hr 160bpm walk up a set of stairs where I get HOT, like Im boiling inside , which is met with headaches about 3 hours later, right at the base of the skull and flu symptoms that night and for 3-4 days later. AND the type of fatigue I get from a 5-6 hours of standing on my feet, in mild sun, helping out some kids fix their bikes, this isnt exertional in the same sense but it makes me run out of fuel, If I do this 2-3 days in a row I'm just tired, really tired, joint pains, poor thinking and sore tendons but theres no flu-type feeling. I cant wait till we fully understand this thing, or at least have a way of understanding how much gas is in the tank
 

gbells

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I cant wait till we fully understand this thing, or at least have a way of understanding how much gas is in the tank
Go read the post in the Craysing group it covers a good explanation. Watch Prusty's video on mitochondrial fragmentation. We know more than we ever have.