Systemic energy deficiency - better than using 'fatigue' ?

[slysaint]

This is the Wiki description of fatigue:
Fatigue (also called exhaustion, tiredness, languidness, languor, lassitude, and listlessness) is a subjective feeling of tiredness which is distinct from weakness, and has a gradual onset. Unlike weakness, fatigue can be alleviated by periods of rest.

This is what most people understand by fatigue. Yet we all know that it (and all the other names in brackets) are not really what is going on, and the research is beginning to show as much.

So my 'new' way of trying to explain to people that I don't just 'get a bit tired', is going to be (I'll give it a try anyway) to say that my body is unable to produce the energy it needs to function normally; ie systemic energy deficiency. It seems to cover all bases(?)

 

[Cheesus]

I usually say something similar to people, but lately I have moved away from the energy aspect and instead tell people that ME is essentially a disease in which exertion makes you sick. I tell them that the severity of the disease is dependent on the extent of exertion needed to induce symptoms. I am very severely sick, so it is quite easy for them to understand what I mean when I say exertion, as I can tell them that just standing up is sufficient to induce symptoms in my case. The more you exert beyond that limit, the worse the symptoms.

I find that helps people to understand that the core of the disease isn't fatigue, but rather PEM.

 

[Seven7]

I say inability to produce energy on demand.

 

[Barry53]

I would suggest it is not a deficiency of energy per se, PwME actually have plenty of potential energy available in their bodies. But what their bodies are unable to do is convert that potential energy into useful kinetic energy, at a rate their bodies need it to. You can have a car with a full petrol tank, but if that fuel cannot get converted rapidly enough into useful heat energy, then it counts for nothing. e.g. Badly blocked fuel line; fuel leak; duff spark plug; etc.

To be more precise, it is lack of power that is the problem, where power is the rate at which energy is made available. From what I see, when discussing human ability to get things done, the word "energy" is typically used when the more precise word would in fact be "power".

 

[Mary]

I've considered saying I have a mitochondrial disorder. Most people know that mitochondria are needed to produce energy. It's probably incorrect - I don't know if ME/CFS is a mitochondrial disorder, but I think the term would get more respect than lack of energy, and if someone questions a little further, I'd say my body has trouble producing energy (which @slysaint is essentially saying I think).

I understand that @Barry53 is correct in the difference between energy and power, but most people will not get that fine distinction, and all I think we're trying to do here is to get people to try to begin to comprehend what the heck is going on with us - and that we're not simply tired.

 

[lauluce]

I've considered saying I have a mitochondrial disorder. Most people know that mitochondria are needed to produce energy. It's probably incorrect - I don't know if ME/CFS is a mitochondrial disorder, but I think the term would get more respect than lack of energy, and if someone questions a little further, I'd say my body has trouble producing energy (which @slysaint is essentially saying I think).

I understand that @Barry53 is correct in the difference between energy and power, but most people will not get that fine distinction, and all I think we're trying to do here is to get people to try to begin to comprehend what the heck is going on with us - and that we're not simply tired.

I take the same approach as you, I tell people I've got a "muscular disease", so despite that's not the case at all, they can understand that I've got difficulties making physical effort due to organic anomalies. For example, I tell that when somebody asks me to help him push his car or something like that. If I where to push a car for even a few metres, I would pay it for the rest of the week... How to explain that to somebody? I better tell them "I've got a muscular disease"

 

[TrixieStix]

I've considered saying I have a mitochondrial disorder. Most people know that mitochondria are needed to produce energy. It's probably incorrect - I don't know if ME/CFS is a mitochondrial disorder, but I think the term would get more respect than lack of energy, and if someone questions a little further, I'd say my body has trouble producing energy (which @slysaint is essentially saying I think).

I understand that @Barry53 is correct in the difference between energy and power, but most people will not get that fine distinction, and all I think we're trying to do here is to get people to try to begin to comprehend what the heck is going on with us - and that we're not simply tired.

I believe some of the more prominent ME/CFS researchers have stated that they feel confident they have ruled out the disease being a "mitochondrial disorder" (which is good for patients they say) but that mitochondria are still involved in /affected by the disease process somehow.

 

[Horizon]

Systemic Energy Disease is better than CFS but still I think most people have no concept of what systemic means in terms of suffering illness and it doesn't really explain those other systemic non-energy related symptoms. I think we are screwed out of a good name till we know what the exact etiology of this disease is unless we named it Ramsay's disease or after one of the initial discoverers/researchers.

 

[SuzieSam]

I mostly avoid the fatigue/exhaustion issue on the rare occasions I'm out. I lean on my chronic migraine diagnosis, to explain my absence from society, which people have much more understanding of, and sympathy for.

Strange that migraines are now fairly well acknowledged as migraine sufferers were almost as badly treated as ME/CFS patients - there are still no biological markers, no lab tests, no proof of disease, no cure for migraines. But a drug treatment was developed 15 years ago.

Suddenly migraine sufferers were taken off the psycho-somatic/hysterical female list when doctors were given a drug that worked for 50% of patients. (It's hit and miss, and can only be used 9 days a month, but it's something. The Triptan class of drugs).

So when doctors are no longer impotent in the face of a disease, we're transformed from malingerers into sufferers worthy of their sympathy? Seems so. They still have no real idea how migraines work. Only theories.