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Is "Energy Envelope" the Correct Model?

Wishful

Senior Member
Messages
5,957
Location
Alberta
The term has always bothered me for some reason. Probably because I have weird ME and haven't felt that sort of "energy deficiency". Instead, my PEM was triggered by the type of muscle usage, rather than the effort or duration, which contradicts the "energy envelope" theory. The main problem I see with the term is that it's a widely accepted model of ME without--as far as I know--actual evidence. In science, that leads to ignoring alternative models that might be correct, or at least superior. It influences judgement of observations in a way that reinforces belief in the model, blinding people to contrary evidence that might lead to an important discovery.

The energy that powers cells is ATP, so is there clinical evidence that PWME reach a limit of ATP production earlier than normal people, with severe patients having a much lower measurable limit? Are there alternative theories for why people feel energetic or "fatigued"?


Some possibilities:

An accumulation of waste products or other chemicals that inhibits the usage of ATP. That should be clinically measurable.
Reduction in oxygen delivered to cells. No, that would affect ATP production, so not really different.
Abnormal temperature, which affects ATP utilization. Unlikely in-vivio, but a valid possibility until actually challenged.
A neurological effect making us "feel drained" even though the muscles are actually operating properly.
Of course the BPS crowd would propose a psychological cause, impossible to prove or disprove.

I'm not suggesting a specific better model, but rather trying to open up minds to consider other possibilities. Think of all the effort that went into trying to explain why the planets moved in strange patterns "above the flat Earth". There was a lot of resistance to a theory that had the sun at the center of the solar system. (Please don't tie me to a stake and burn me for challenging the "energy envelope" theory.) Maybe, if people question existing theories, someone will notice some data that doesn't fit them, and come up with a better theory.

The "energy envelope" model can be useful for managing PEM, but that doesn't mean that it's the correct model for understanding ME.
 

Dysfunkion

Senior Member
Messages
307
I can kind of apply to my case, I have self measurable time spans of doing certain activities that will trigger crashes and my crashes are almost always the same no matter how I get to them besides if it involves something like an allergen or EMF exposure it will be much worse neurologically and I'll get more side effects in the neuropathy department. Different things have different time envelopes. One weird quirk in my case is that for some reason besides when crashed using my legs a lot doesn't do much. I can walk for over an hour and just be normal somewhat more exhausted though repetitive over use of my arms and hands more so will get crashy in less than half an hour and then get progressively worse. In a crash my legs will be progressively more paralyzed though with a lead like feeling. It seems like what causes the crashes is too much of a signal load in my brain that is accumulative and is probably producing some kind of metabolite my body can't get rid of fast enough. I'd describe the feeling like my brain being a battery that is being charged up that is too slow to lose charge and the higher charged it gets the more of a paradox happens where it will just lock up and get extremely erratic. I'd use more of a dysfunctional battery model in mine. It gets physical and is physically triggered but mine has more of a immune neurological edge to it that in turn causes severe physical problems as it gets worse.

If I push past this things will get dangerous. When I get the increased ear ringing, a ton of post nasal drip/inflammation in the sinuses, a small sense of ear pressure with a little hearing difficulties, and a sort of warm feeling in my forehead/face I'll know if I don't cut out what I'm doing to keep that accumulation going then I'm gonna be sick with a whole host of neurological/psychological issues for a very long time. And like I said all of my triggers will eventually get there with allergen/environmental based one getting there the quickest.
 

linusbert

Senior Member
Messages
1,365
i think its for various reasons a problem of energy recovery. regeneration. the body cant regenerate enough atp for appropriate functioning.
i describe it like my energy system is like a old battery, it drains fast and takes long to charge up.
this is a test we actually can do, measure atp in blood, which often is a measurement of how much atp will ge generated after a artificial induced blockage which then is lifted.
i use to get better after eating, thats indicative for this, as after food the body has lots of energy of which needs to be processed. so immediately after food a lot of things are getting better, even allergies!

Of course the BPS crowd would propose a psychological cause, impossible to prove or disprove.
sure they can prove it, if you 3+ symptoms in different organ systems + deny a psychological cause this is according to their guidelines proof. :)
(of course the guidelines are lunacy... if denying a accusation is automatically proven it to be true... cannot described by other terms).
often when being at those clinics i was thinking "your honor, i am innocent" ... when they present their judgment over my case.

If I push past this things will get dangerous. When I get the increased ear ringing, a ton of post nasal drip/inflammation in the sinuses, a small sense of ear pressure with a little hearing difficulties, a
i somehow know this. i always attributed it to too long head being in bad position. somehow putting pressure on nerves or mucles get swollen and pressuring the nerves. sadly if i read a lot or do things i am automatically in this bad position.
maybe you also have some nerve problems around the neck area.
when i overdo this completely i get the ear pressure and ringing, noise and light sensitivity and the feeling of being insane. when i had it the first time i wanted to jump out of the window. it was so disgusting. i didnt want to go to hospital with broken legs, that pain was intense but manageable. but this head pressure thing i was telling nursing home to bring me into hospital... they denied it, and it got better over hours and days. this all are symptoms of neck compression.
often its not tight to my muscle symptoms which are my main symptoms.
 
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Dysfunkion

Senior Member
Messages
307
i somehow know this. i always attributed it to too long head being in bad position. somehow putting pressure on nerves or mucles get swollen and pressuring the nerves. sadly if i read a lot or do things i am automatically in this bad position.
maybe you also have some nerve problems around the neck area.
when i overdo this completely i get the ear pressure and ringing, noise and light sensitivity and the feeling of being insane. when i had it the first time i wanted to jump out of the window. it was so disgusting. i didnt want to go to hospital with broken legs, that pain was intense but manageable. but this head pressure thing i was telling nursing home to bring me into hospital... they denied it, and it got better over hours and days. this all are symptoms of neck compression.
often its not tight to my muscle symptoms which are my main symptoms.

When this happens I'll feel increased pressure around the base of my head where it connects to my neck. Normally I may get a little ache now and then there but outside of a state like this it's never bad. It does come with the signature "going insane" feeling you speak of too, it's actually the worst part of it. It does get better over hours and I been here so many times before that I know it's my brain playing tricks on me and I need to just wait it out and try not to do what triggered it again. Very difficult to describe it but it's like hysterical depression and a panic attack joining forces to create the worst state of mind a human can feel. In this case today (you're going to laugh at this one) I just played too much of a card game online that required too many rapid fire decisions and button clicking (mouse is a bit less EMF producing per click but I guess even that gets bad after a while for me). Back to loafing around on youtube all day till I get out of this one. ugh
 

linusbert

Senior Member
Messages
1,365
In this case today (you're going to laugh at this one) I just played too much of a card game online that required too many rapid fire decisions and button clicking (mouse is a bit less EMF producing per click but I guess even that gets bad after a while for me). Back to loafing around on youtube all day till I get out of this one. ugh
na not laughing, i know this too.

just came in with my newsletter, fitting the topic:
https://chrismasterjohnphd.substack.com/p/how-low-methylation-destroys-your
and this
https://chrismasterjohnphd.substack.com/p/energy-metabolism-governs-everything

energy metabolism is everything, kinda my idea
 

Dysfunkion

Senior Member
Messages
307
na not laughing, i know this too.

just came in with my newsletter, fitting the topic:
https://chrismasterjohnphd.substack.com/p/how-low-methylation-destroys-your
and this
https://chrismasterjohnphd.substack.com/p/energy-metabolism-governs-everything

energy metabolism is everything, kinda my idea

We both seem like based on our crashes we have the same general thing going on in energy metabolism, if I could figure out specifically what is going wrong I'd target it directly. Reading into these blogs right now to see if I can find anything in them to give a try. I think next I'm going to try high dose biotin and see how I respond to that. I know one of my main energy issues is in the methylation cycles with some sort of mitochondrial dysfunction. For me like someone else reported where their methylation seemed to just stop working suddenly, even my methyl-b12 doesn't seem to do much but just keep me alive (if I stop taking it body essentially just shuts down). Riboflavin makes me extremely brain foggy and fatigued. Niacinamide makes me feel a weird wired feeling for a short time like some engine is trying to start but then I just get dropped into a day of more plain exhaustion but then bounce back the day after. Thiamin in any form gave me brief windows of proper functional energy but it literally felt like it flickered out on the last day I took and I felt worse a short while after.
 

Wishful

Senior Member
Messages
5,957
Location
Alberta
i think its for various reasons a problem of energy recovery. regeneration. the body cant regenerate enough atp for appropriate functioning.
I haven't encountered any trustworthy studies showing that PWME produce significantly less ATP than healthy people. Something that simple should show up in multiple studies. I discount any studies that are tailored to show results that barely meet "statistical significance" showing that inactive PWME produce less ATP than healthy active controls.

Reduced ATP production is an easy-to-understand explanation for feeling tired, but easy doesn't mean correct. I don't know for sure that it's not correct, but I think it shouldn't be taken as correct when there's no real evidence supporting it and an absence of evidence that should exist if it was correct.

i use to get better after eating, thats indicative for this, as after food the body has lots of energy of which needs to be processed. so immediately after food a lot of things are getting better, even allergies!
That's choosing a model that fits the desired theory, and ignoring the counterarguments. Immediately after eating, at least parts of the body should be depleted of fuel, since digestion does consume energy. A hit of pure sugar will probably provide fresh fuel for cells more quickly than a big meal of meat. Did your "getting better" correlate with digestion times? For proper science, you can't just select the data that fits your theory and reject the data that doesn't fit.

I did a quick scan of that, and it gave me the impression of selective choice of parts of scientific theories being jammed together to support a story. "Hand waving" and "misdirection" were words that popped into my mind. Science isn't about making a story in a way that convinces people; it's about proposing a hypothesis and testing its validity.

So, while "energy envelope" sounds easy and comfortable, it seems to be lacking in the "testing the validity" part and ignores that the hypothesis should be easy to test for validity.
 

Wishful

Senior Member
Messages
5,957
Location
Alberta
I can walk for over an hour and just be normal somewhat more exhausted though repetitive over use of my arms and hands more so will get crashy in less than half an hour and then get progressively worse.
My explanation for that doesn't involve ATP deficiency; it involves immune activation. Using muscles in ways that you normally don't causes muscle damage (microtears) that activates the immune system, which activates the glial cells, resulting in symptoms. I can't prove that it's the correct theory, but it has no less evidence supporting it than the "not enough ATP" theory. For me, there was a reliable 24 hr delay between muscle cell damaging activity and the flare-up of symptoms, and there's a known 24 hr delay between exertion and IFN-g production, which does fit my theory. That a 40 km bike ride (after building up to that level of riding) didn't trigger PEM while less than a minute of unusual fairly minor exertion (washing a window or climbing a few rungs up a ladder) seems to be counterevidence of ATP production problems.

We don't know which theory is correct yet. Blinding ourselves to alternative theories by accepting one just because it's convenient and has a frequently encountered label (energy envelope) isn't helpful.

PEM seems to be triggered by exertion, so "exertion limits" is less selective of one theory than "energy envelope".
 

Dysfunkion

Senior Member
Messages
307
My explanation for that doesn't involve ATP deficiency; it involves immune activation. Using muscles in ways that you normally don't causes muscle damage (microtears) that activates the immune system, which activates the glial cells, resulting in symptoms. I can't prove that it's the correct theory, but it has no less evidence supporting it than the "not enough ATP" theory. For me, there was a reliable 24 hr delay between muscle cell damaging activity and the flare-up of symptoms, and there's a known 24 hr delay between exertion and IFN-g production, which does fit my theory. That a 40 km bike ride (after building up to that level of riding) didn't trigger PEM while less than a minute of unusual fairly minor exertion (washing a window or climbing a few rungs up a ladder) seems to be counterevidence of ATP production problems.

We don't know which theory is correct yet. Blinding ourselves to alternative theories by accepting one just because it's convenient and has a frequently encountered label (energy envelope) isn't helpful.

PEM seems to be triggered by exertion, so "exertion limits" is less selective of one theory than "energy envelope".

That makes sense though, I also have been living this way my entire life and they've developed to tolerate that load. Though I don't give them a lot of stress, I should do that and see what happens. My upper body is very thin and can't handle too much without getting weak despite the physical endurance I have. There is a definite energy problem going on but it seems to be an a consequence of something else going horribly wrong. There's a lot more going on in energy production besides ATP too, like I just typed in a last post I have a lot of weird reactions to vitamins in the B family, I can't seem to get enough B12 despite being at 2000 mcg a day that I need, krebs cycle cofactors either make me more lethargic and drop me, or in citrate's case give me a tiny boost and then crash (I also need vitamin C every day or I crash), and I also have extremely bizarre responses with anything vitamin D depending on the form and even route of administration.

It could be that like you microtears in muscles that are less strong in me upon repeated exertion and subsequent immune activation could be playing a role, the common thing with what crashes me appears to be immune activation and reactivation of some sort of chronic infection. Vitamin D is also a potent immune modulator, I actually did an experiment today where instead of ingesting it I bypassed my guts entirely and put 1000 iu of drops on my skin and rubbed it in. When I use it this way I get a more consistent sense of energy and brightness to my senses without the horrible side affects of immune overactivation and severe fatigue I eventually get with all forms of oral D3. I'm actually going to do this tomorrow too and see if it's consistent. I also now have biotin on the way because I want to see what my response to that is like.
 

cfs since 1998

Senior Member
Messages
711
The term has always bothered me for some reason. Probably because I have weird ME and haven't felt that sort of "energy deficiency". Instead, my PEM was triggered by the type of muscle usage, rather than the effort or duration, which contradicts the "energy envelope" theory. The main problem I see with the term is that it's a widely accepted model of ME without--as far as I know--actual evidence. In science, that leads to ignoring alternative models that might be correct, or at least superior. It influences judgement of observations in a way that reinforces belief in the model, blinding people to contrary evidence that might lead to an important discovery.
There's no widely accepted theory and in 26 years I've never even heard of the "energy envelope model."
 

JES

Senior Member
Messages
1,364
There's no widely accepted theory and in 26 years I've never even heard of the "energy envelope model."
Well I don't know if there is a more commonly used term, but as far as I know the "energy envelope model" simply means that you have to stay within your limits of (physical) energy spending and if you overdo it you develop PEM. That is how most people with ME/CFS respond. I don't have that type of PEM and neither do many of the long COVID patients for example, so it's a bit tied to how strictly ME/CFS is defined.
 

linusbert

Senior Member
Messages
1,365
That's choosing a model that fits the desired theory, and ignoring the counterarguments. Immediately after eating, at least parts of the body should be depleted of fuel, since digestion does consume energy. A hit of pure sugar will probably provide fresh fuel for cells more quickly than a big meal of meat. Did your "getting better" correlate with digestion times? For proper science, you can't just select the data that fits your theory and reject the data that doesn't fit.
my getting better correlates with simple carbs and insulin. any insulin spiking food helps. also insulin alone like a injection helps.
if its hard to digest it sometimes comes with a bit of stomach discomfort like a stone or something. but i do not feel depleted like usual.
I haven't encountered any trustworthy studies showing that PWME produce significantly less ATP than healthy people. Something that simple should show up in multiple studies. I discount any studies that are tailored to show results that barely meet "statistical significance" showing that inactive PWME produce less ATP than healthy active controls.
i want to see a person with cfs and pem who have normal or high ATP values in the blood test. i did not. mine were low.
its really easy, we do not even need to speculate here. just doing the blood test with the block will tell a lot.
but a normal test doesnt invalidate the theory. as the mitochondria in the blood might not be the defect ones.

So, while "energy envelope" sounds easy and comfortable, it seems to be lacking in the "testing the validity" part and ignores that the hypothesis should be easy to test for validity.
i do not know what energy envelope theory is, never read about it.
i just know that there a mitochondrial defects (mitochondriopathy) and diseases which i was suspected to have (metabolic myopathy) which really looks like cfs.
and those are basically too less atp for various different reasons, by failures in energy metabolism.
so those are no theory, those are real diseases. there is just speculation that those mitochondrial defects go much farther then already known and that minor issues can lead to moderate diseases. (usually those mitochondrial diseases are crippling in early age and potentially deadly)

the hypothesis is really simple to test, just to atp measurement of the correct parts. muscle biopsy etc.

also there is a thing called negative bias.

i do not believe in a single cause for cfs. i think there a alot and cfs as the name suggests is just a syndrome as a group of symptoms. but i believe a big subset of cfs folks have too low atp.
I did a quick scan of that,
a quick scan doesnt justice. this guy suspects to have himself a inherited disease in energy metabolism. he can fix a lot with b2. he also is nutritionist with phd and does active research in that area. also he knows very much about bio chemistry. he has good explanations for a lot. with a foundation in science. all his explanations are deeply rooted in established science and studys. the things which he theorizes he very clearly tells when he is speculating personally.

There's no widely accepted theory and in 26 years I've never even heard of the "energy envelope model."
and i think there never will be, i think its isolated diseases or "origins" of what leads to symptoms of cfs.
if they look after a theory for everything cfs i doubt they will ever cure people having this.
they can only treat a subset of the whole cfs community group by isolating the cause and find a potential treatment. and then this must be done one by one for every cause.
 
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Wishful

Senior Member
Messages
5,957
Location
Alberta
Would replacing "energy" with "exertion" be an acceptable solution? You can say that you have an "exertion envelope" which means that there are certain levels and durations of specific exertions that you can do in a day, but doesn't presuppose a physical cause (ATP limits).

With a car, someone might have a limit to how far they can drive in a day. You wouldn't presuppose that it's a fuel limit; it could be a clogged fuel filter, or a cooling system problem, or the alternator doesn't charge the battery enough, leading to ignition failure after some time. We don't know why ME forces limits on exertion, so we should leave off that presupposition and just say that it's exertion limits.
 

Wishful

Senior Member
Messages
5,957
Location
Alberta
Beyond that it doesn't really matter if you talk about batteries or spoons, budgets or envelopes.
The point is that it does matter if the term presupposes one theory (energy, meaning ATP). "Spoons" doesn't commit itself to one theory. It's the common use of "energy" in official publications and discussion that's the problem.
 

Viala

Senior Member
Messages
681
Why to complicate simple things. Energy envelope is a handy and clear term meant to guide people with ME on how to approach daily activities mostly. We should use a simple language. When someone is fatigued they would rather say they have low energy than use the word exertion.

Many people here are fatigued without doing any activities so it is easier to say they have low energy than to say their exertion limit is low, which would imply that they have some spare energy in the first place. Also when you say exertion the first thing that comes to mind is exercise and not for example washing hair, talking or standing, so I think the term could be misleading same as the term CFS.

Both terms could work together, but not one replacing the other. So for example you could say your energy envelope is good but you have low exertion limit, these terms could differentiate between ME/CFS types.

That said, I think a lot of our problems come from the fact that we do not have appropriate vocabulary to explain exactly how ME/CFS feels. There are just no words yet that would describe it well and without proper vocabulary it is easier to think that the problem doesn't exist. Coining new vocabulary would be beneficial, but we need to be careful because a wrong term could work against us. Language is a powerful tool.
 

Wishful

Senior Member
Messages
5,957
Location
Alberta
Are they using energy to mean ATP?
I'm not sure what their intention is, but it is a term that can be readily misunderstood to mean ATP or mitochondrial dysfunction. The term "chronic fatigue syndrome" is commonly misunderstood to be chronic regular fatigue, rather than ME's fatigue-like symptom, which leads to problems such as "we aren't measuring what we expect to find with fatigue" or "if these treatments that work for fatigue don't work for you, you're doing something wrong or just imagining the symptom".

"Energy" has a specific meaning to scientists. For the human body, that means ATP. So saying "I don't have enough energy" means "I am not producing the required amount of ATP". Non-scientists may not appreciate the difference, but non-scientists aren't likely to solve ME. I think it's important for scientific literature about ME to avoid misleading or presupposing terms.
 

linusbert

Senior Member
Messages
1,365
measuring energy might be not enough. what they need to measure is how much energy can be replenished in specific interval.
cfs folks might have similiar results than a healthy person in a bicicle test. but if they do the same test 3 days later again, a healthy person would do same performance as the first time, but the cfs patient would not.
 

southwestforests

Senior Member
Messages
670
Location
Missouri
The term has always bothered me for some reason.
Haven't been here for a while and haven't looked at much of anything in ME/CFS research for several years until recently; so I'm not sure what the full working definition of "Energy Envelope" is regarding ME/CFS.
However,
as for those 2 words themselves,
my Dad and Granddad were each pilots for a season of their lives.
So,
maybe this will help?
https://simpleflying.com/flight-envelope-guide/
A flight envelope, also known as a performance envelope, refers to the design capabilities of the aircraft. During various phases of flight, such as takeoff, climb, cruise, and landing, the aircraft goes through varying structural loads. Structural loads are a function of several parameters, including airspeed and altitude.

Aircraft operators must familiarize themselves with the aircraft’s flight envelope to ensure safe operations. An aircraft must operate within its designed flight envelope to maintain its structural integrity.

Determination of flight envelope

Aircraft constraint diagrams are developed during the design phase. Design engineers calculate limits for maximum speed, altitude, load factor, and maneuverability. The most critical parameters affecting the aircraft’s load factor are plotted on a flight envelope diagram.

Okay, just looked up, Energy envelope ME/CFS.

https://cfsselfhelp.org/library/finding-your-energy-envelope-part-1

This article and the next one will propose another way to live with ME/CFS or FM. I'll suggest how finding and honoring your limits (your energy envelope) can give you some control and improve your quality of life.

The Energy Envelope

To use the idea of the energy envelope, think of your situation as having three elements. The first is your available energy. This is the energy you have to accomplish things. It is limited and is replenished by rest and food.

The second is your expended energy, the energy you lose through physical, mental and emotional exertion.

The third is your symptoms, fatigue, brain fog, pain, and so on. In this view, if you expend more energy than you have available, you will intensify your symptoms. This is called living outside the energy envelope.

The price of living outside your limits is an intensification of symptoms called Post-Exertional Malaise (PEM). The key fact about PEM is that it is out of proportion to the overdoing, creating an powerful incentive to stay within your limits, also called living inside the energy envelope.

If you keep your expended energy within the limits of your available energy, you have a chance to reduce symptoms, and over time may be able to expand your limits.

Okay, that makes sense, fly within the envelope and you can do things successfully.
Fly outside the envelope, exceed the limits, go beyond the parameters of your available energy level, and you are very likely to crash.

That bit in the below can certainly apply to us who have ME/CFS as well,

https://www.uavnavigation.com/support/kb/general/general-system-info/flight-envelope
2. If an aircraft flies 'outside the envelope' it may suffer damage; the limits should therefore never be exceeded.
 
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