Growing old versus ME/CFS—which is which?

Creekside said:
It's still not proven that the problem lies in the muscles. It could be in the signalling sent to or from the brain, or the processing of those signals in the brain.
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The cause is yet to be determined, but I am intrigued by the Locus Coeruleus hyperactivation and failure to produce norepinephrine. If confirmed this is possibly the smoking gun we have been looking for. Its probably linked to signals from overactive microglia. Its a specific molecular target, trying to fix the enzyme dopamine beta-hydroxylase. This impacts vasodilation, which impacts oxygen and nutrients to muscle and organs. The heritable problem with this enzyme has orthostatic intolerance as a core symptom. It will mess up sleep and the entire autonomic nervous system.

As for proving muscle issues, recently there was a study showing muscle oxygen diffusion is low. They are often hypoxic, especially if we make a demand on this. This may or may not apply to all patients, a much deeper discussion. The Perikles protocol (my term, not official) is based on the concept that our muscles are hypoxic, both in ME and LC. Taking that into account many of us can do careful resistance training.
 
alex3619 said:
I am not that worried about muscle loss with ME, if the ME is gone you can fix that with time and effort. I am much more worried about bone deconditioning from prolonged bed rest. That is much harder to fix.
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I've always been a big milk consumer and get through 6 liters a week. I hope this helps keep my bones as strong as possible. I have wondered about the impact of all the bed rest I have had to do the last three decades. But I would rather the bed rest and any impact of that than returning to very severe ME again. I never want to experience those years ever again so I will take whatever impact all the years of bed rest may have on me in the future.

I must say that when I got ME in my thirties I never thought I would live to see forty and then at forty I never thought I would get to fifty. Now here I am nearly 62 and I am not sure whether I will see 70. I am grateful to have got this far really. It has been surprising to have got this far.
 
This Study just came out in case anyone's interested.

New & Noteworthy. This study reveals that upper-body strength declines more rapidly in males than females with age, whereas trending results suggest that bone mineral density may show a stronger decline in female participants. We found that upper-body strength and lean mass predict arm bone mineral density, and these relationships strengthen with age. These findings highlight the importance of maintaining upper-body strength for skeletal health, particularly in female participants, to mitigate osteoporosis risk.
 
Mij said:
This Study just came out in case anyone's interested.

New & Noteworthy. This study reveals that upper-body strength declines more rapidly in males than females with age, whereas trending results suggest that bone mineral density may show a stronger decline in female participants. We found that upper-body strength and lean mass predict arm bone mineral density, and these relationships strengthen with age. These findings highlight the importance of maintaining upper-body strength for skeletal health, particularly in female participants, to mitigate osteoporosis risk.
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Yeah that's not good for us is it?

I think the difficulty is we don't know how much recovery is possible for any of us who've been unwell and debilitated maybe since we were children or adolescents. If we were mildly affected, then maybe with a cure or treatment for ME, we could have a decent time as older people.

But maybe if we were moderate to severe to very severe we're pretty much fucked due to not building muscle mass and protecting our bones whilst we were young enough.

I don't know I think it was the 33year old woman with very severe ME whose mother helped her to die back some decades who had osteoporosis already and that was one if the reasons she couldn't bear to go on living.

Ever since I heard that story I've not been optimistic about the chances of a good old age for those of us physically restricted by ME to any significant degree.

But I still think any age without ME is gonna be a better option than with it and so we'd all benefit to some extent

Re muscle mass building, I don't think it's necessarily possible at any age. I think the evidence is it's helpful to try to maintain what you've got or rather minimise what you lose. But that takes not having ME too badly.....
 
Jaybee00 said:
Aging and ME/CFS share a lot of symptoms/characteristics:

Decreased stamina, vigor, endurance
Worsening of sleep
Increased need for naps
Increase in forgetfulness (i.e brain fog)
Increase in aches and pains

If you’ve had ME/CFS for a long time and are middle-age and beyond, how can you tell what is ME/CFS versus what is normal aging?

For example, I take more naps than I did before ME/CFS—am I napping more now due to ME/CFS or is this just an aging thing?

Putting this a different way, if say Daratumumab is curative, and someone who’s had ME/CFS for 25 years takes it, they are obviously going to be better, but at the same time, they are not going to have the same vim and vigor they did 25 years ago. In other words, the baseline is not how they were 25 years ago but is a comparison to how they would have been at the same current age without ME/CFS. So how would you know how much better you are if you don’t have your own current age non-ME/CFS mind/body as a comparison?

Hope this doesn’t come off as sounding overly philosophical, but was thinking about this recently.
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I think we'd really know that our illness was diminished by treatment. We'd feel it. Feel better. But maybe we'd not have a way to know whether the symptoms we were left with were manifestations of ongoing disease processes, permanent damage from the disease process or another process. Aging directly or age related disease or diseases.
 
Jaybee00 said:
If you’ve had ME/CFS for a long time and are middle-age and beyond, how can you tell what is ME/CFS versus what is normal aging?
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Fatigue may be associated with aging, but I wouldn't consider it an inherent part of normal aging. Some cancers may be associated with aging, but we don't' consider it an inherent part of aging after all. But ability/stamina declines are obviously. People tend to get more deconditioned as they get older, and excess fatigue could be caused more by that than aging itself. Idiopathic chronic fatigue seems to be more prevalent in older people though. But that's still a pathology, not a part of normal aging.

I don't think napping is an inherent part of aging either. It's probably caused by inability to sleep fully at night due to changing sleep pattern associated with aging.
 
MrMagoo said:
I feel I need to read up on aging to see which advice I’m getting from physios etc one told me to stay in bed until I can sit upright with feet on the floor. I think that’s “old person” advice
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The first thing I do in the morning when I get out of bed is to go straight to the jug and turn on for a cup of tea, then off to the bathroom. Once the jug has boiled I make a cup of tea and head back to bed and I won't get up again until I have finished that cup of tea.

The purpose is to rehydrate so that I will be steadier on my feet. I thought it would be a good routine to get into permanently so that I reduce risk of falls. Although there has been the odd time when I have hurried to put the heat pump on on a very cold morning but I usually hurry knowing to be careful on those occasions.
 
Hutan said:
I have vaguely wondered if a significant part of the symptoms of old age are in fact ME/CFS. That is, maybe nearly every human gets what we have, sooner or later.

The overlap in the symptoms of old age and ME/CFS must surely account for the reduced diagnosis of ME/CFS in older people.
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Some symptoms yes but overall I don't think so. I think we would be more aware of elderly hitting very severe ME after 60-70 years of age if there was a ME process going on.
 
AliceLily said:
I think we would be more aware of elderly hitting very severe ME after 60-70 years of age if there was a ME process going on.
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Well, I think it's likely that my 92 year old relative developed ME/CFS after a Covid-19 infection. But, of course the sudden decrease in stamina and the symptoms could also be the result of many other things.

I still don't think we would necessarily know if ME/CFS onset was occurring in people aged over 65 years at similar rates as in younger people. It's not something that doctors typically think of.
 
AliceLily said:
The first thing I do in the morning when I get out of bed is to go straight to the jug and turn on for a cup of tea, then off to the bathroom. Once the jug has boiled I make a cup of tea and head back to bed and I won't get up again until I have finished that cup of tea.

The purpose is to rehydrate so that I will be steadier on my feet. I thought it would be a good routine to get into permanently so that I reduce risk of falls. Although there has been the odd time when I have hurried to put the heat pump on on a very cold morning but I usually hurry knowing to be careful on those occasions.
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Well I’d never get out of bed if I followed physio advice
 
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