Growing old versus ME/CFS—which is which?

[Jaybee00]

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.

 

[Sasha]

Hope this doesn’t come off as sounding overly philosophical, but was thinking about this recently.

I think about this a lot. I don't know how much of people feeling more tired as they get older is due to the accumulation of the effects of a poor Western lifestyle (rubbish diet, lack of exercise, etc.), and how much it's possible to avoid it by living healthily. I can't exercise but I try to give myself the best possible diet, in the hope that when the magic wand arrives, I'll still have some life left in me (and then I can start exercising!).

 

[MrMagoo]

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

 

[Hutan]

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.

 

[Kitty]

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?

I think if something works on the underlying mechanism, breaks the cycle, you really will know. Of course it would have to be measured scientifically for the trial, but how you feel is something else.

When I recovered my function (overnight the first time), I was in no doubt. It was everything. I woke up to find my digestive system worked differently, my mind was clear and sharp, my body felt two stone lighter (luckily not literally, I was a bit underweight!), my reactions were fast, I could sit down and my whole body would relax instead of the small muscle fibres retaining tension that never goes away. I was hungry all the time, at night I slept well then woke up eager to get going, my vision snapped into focus...

It was a hundred tiny things, not two or three big ones, and most of it was unrelated to fatigue. You only become aware of some symptoms when they stop, and a lot of niggly, uncomfortable things stopped. Looking back at the first couple of months I don't think my step count would have changed much (which is why I've argued for additional outcomes in trial measures). I was just enjoying having myself back, feeling alive, and being able to sit down to relax instead of collapse exhausted. I hadn't done anything to prompt the recovery, it just happened out of the blue.

That was in the mid-1980s and I'm a lot older now, but I'd hope some of those same small-yet-huge changes occurred. Some did after the first Covid vaccine, I regained that ability to relax my muscles, the hunger, the mental clarity. Didn't last, sadly, but at least I know the capacity is still there.

I don't think it's about fitness or anything like that, it's more the possibility of getting stronger if you want to. Eventually I decided I did during that the first remission, and it was just as you'd expect—took ages, but it came. We never lose the ability to build muscle, no matter how old we get. Heavy weights, minimal reps still works in really elderly people.

 

[Sasha]

Heavy weights, minimal reps still works in really elderly people.

That's interesting because I've read that it get harder and harder for older people to build muscle, but I don't recall anyone talking about heavy weights/min reps vs light weigths/many reps.

 

[Creekside]

As Kitty pointed out, if you did have an ME remission, it's so dramatic that you'd know the symptoms weren't just old age.

As for other health problems, I like to blame them on ME. If we have to put up with this awful disease, might as well get some use from it.

 

[Kitty]

If we have to put up with this awful disease, might as well get some use from it.

 

[Creekside]

That's interesting because I've read that it get harder and harder for older people to build muscle,

A lot of "common knowledge" ends up being proven false. I expect that some people are less able at various things as they age, but others remain able. You could "prove" that old people can't build muscles easily by selecting some feeble elderly and comparing them to healthy, active young people, but that's the kind of bad study we hate.

 

[shak8]

I have primarily been diagnosed with FM in 1996, but also CFS.

Maybe the following will be of some value:

I turn 75 this year and my FM symptoms (pain, exhaustion, cognitive dysfunction) are always "worse" when I contemplate how to describe it for my annual MD visit.

But yes, I do think I can safely say my physical stamina is less after age 71. There is sarcopenia--a lost of muscle which I noticed in my gluteal (butt) muscles, and hamstrings (thighs), despite no change in my muscle use. Those muscles just melted away last year at age 74. No reason, no weight loss.

My gait feels off a lot of the time, like I have ataxia--sensation of my legs are moving in directions they needn't. Worsened when I take a med whose side effect is dizziness. I started experiencing this at age 73.

I can't walk half a mile on consecutive days as my legs get heavy, and thigh pain gets super activated. This is new for me. I've adapted by walking in the neighborhood on days off from the park.

I would imagine that everyone ages differently but yet some diminution of energy is universal and ability to respond to stress is less. Cognitive abilities are affected and noticeable by your seventies. You forget names, why you went to room....this happens regularly. I've found it harder to concentrate and harder to read books.

But the good thing about being nearly 75 is feeling universal love.

I think of this life phase as a long, slow savoring farewell.



lots of edits

 

[Revel]

I've had ME for over 50 years, been pretty much bedridden for some time. My mother is 91 years old, lives independently, is mentally pin sharp and physically active. She is not incapacitated in any way. l can only dream of achieving such a level of functioning right now, let alone in old age!

She has never been understanding of ME and is frustrated by my apparent lack of motivation to get up and at 'em.

 

[Kitty]

I don't recall anyone talking about heavy weights/min reps vs light weigths/many reps.

It's the same for anyone, of any age. Obviously lifting has to be done safely, which is why people often go for lighter weights/more reps. Also, they're often doing it as part of a mixed regime that includes building aerobic fitness.

But if you just want strength, heavy weights that you fail at after a few reps (with someone spotting your posture), eat properly, don't do it too often.

I used to go to the police gym because it was round the corner from where I lived, and there were some very big lumps in there. They trained with seriously heavy weights, but only twice a week for an hour.

 

[ahimsa]

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?

I've been sick since 1990. One way I can tell is to look at people I know who are the same age or older than myself.

For example, I have a friend who is more than 20 years older. She's 85. She can do so many more things than I can. She even goes to the gym.

She doesn't need any mobility aids at all. Unlike me, she can stand in line at a store without a folding cane/seat, she doesn't need a chair in the shower, and so on.

Of course, it could be due to her good genes. Her mother lived to be over 100 and was living independently up until the last few years.

So let's compare with someone with similar genes by looking at my father. He was doing really well - still walking for a few miles daily, still mentally fit - until he started having various health issues about 2 years before he died (age 85).

Or I can look at my older sister. She is 2 1/2 years older. She still has an enormous amount of energy. Her job is dog training. During her dog training sessions she also walks the dogs for a pretty long distance. On top of this she takes long walks with her husband. She also has a really good memory, no issues there.

Maybe some of my symptoms are related to aging. But there's a huge difference between my abilities and those of someone who's the same age but doesn't have ME/CFS.

All my friends who are roughly the same age still go hiking and/or travel. Some have had knee replacements, others have had other health issues, but their physical and mental abilities are so much higher mine that there's no comparison.

In any hypothetical situation where there's a cure for ME/CFS if I got even half of the abilities of any of my friends who are the same age I'd be ecstatic.

And I'm not even in the severe category. I think I'm moderate - unable to work, mostly stay at home resting, but able to leave the house anywhere between 1-3 times a week if I plan carefully and rest a lot.

 

[Sasha]

I've had ME for over 50 years, been pretty much bedridden for some time. My mother is 91 years old, lives independently, is mentally pin sharp and physically active. She is not incapacitated in any way. l can only dream of achieving such a level of functioning right now, let alone in old age!

She has never been understanding of ME and is frustrated by my apparent lack of motivation to get up and at 'em.

I'm sorry, @Revel! I am also being outperformed big-time by a mother in her 90s.

 

[Rick Sanchez]

As Kitty pointed out, if you did have an ME remission, it's so dramatic that you'd know the symptoms weren't just old age.

Yeah. Once you reach the moderate or worse part of MECFS remission feels like divine intervention. The difference is so extreme it is hard to describe.

I never fully recovered during my brief ´´remission``, and my sleep still wasn`t perfect when I was temporarily better, but even though I would often wake up many times at night it was still infinitely better. Just the ability to feel sleepy at all was such a blessing. Waking up refreshed in the morning regardless of how many times I woke up or my sleep was interrupted... Ah...

 

[Sean]

The overlap in the symptoms of old age and ME/CFS must surely account for the reduced diagnosis of ME/CFS in older people.

Good point.

When I recovered my function (overnight the first time), I was in no doubt. It was everything.

As Kitty pointed out, if you did have an ME remission, it's so dramatic that you'd know the symptoms weren't just old age.

Mostly early on, but I have had a few times when I improved hugely more or less overnight (though nowhere near full recovery), for no obvious reason. It never lasted, but the point is that I was functioning at a much higher level.

This is one of the main reasons why I have no doubt whatsoever that the deconditioning hypothesis is completely false. There is no way re-conditioning to that degree could happen overnight.

 

[Trish]

The overlap in the symptoms of old age and ME/CFS must surely account for the reduced diagnosis of ME/CFS in older people.

Speaking as someone experiencing both old age and ME/CFS, and comparing myself and what I am able to do compared with my sister nearly 2 years older than me, and with some health problems of her own, the contrast is stark. She can still travel the world, socialise, run a home, and all the things I would love to be doing.

I think sudden onset ME/CFS would be very easy to recognise as different from the effects of old age. It's possible some old people are not being diagnosed because some doctors recognise it but see no point in telling patients and just telling them it's old age to get rid of them and not offer any help.

 

[alex3619]

That's interesting because I've read that it get harder and harder for older people to build muscle, but I don't recall anyone talking about heavy weights/min reps vs light weigths/many reps.

Age and ME are different in this respect. Using the Perikles approach I have been able to do a little resistance training for over a year now. I choose weight that means I can exercise for about thirty seconds, stop if I am breathing heavily, change muscle groups the next time, and between I rest as needed. Perikles Simon with LC patients finds two minutes is enough rest. I find hours and sometimes days are required, but then I am less well and over 60, hitting retirement age soon.

Older people require lighter weights to avoid injury, careful selection of exercises, and up to 3.2 g of protein per kilo of body weight. Non exercising require at least 1.6 g per kilo. This is hard to do if vegan, requiring a lot of work, but easy if eating meat or dairy.

Based on my many spontaneous remissions a few decades back, you will probably know if the ME is gone. Its night and day. I used to suddenly realize things were normal, which took a little while, because I was without symptoms. A few hours later, typically 6, I would relapse and slowly feel all my symptoms return over a few hours.

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.

As for aging there are now protocols to slow and even reverse biological age. These will get better and cheaper over time. First we need that ME cure though. Its great we are focusing now on specific mechanisms in trials, such as targeting mTOR and dopamine beta hydroxylase. Its much easier to see results when you know what to look for.

 

[alex3619]

what I am able to do compared with my sister nearly 2 years older than me

I have told this story so many times, hope its new to most of you. Coming home from uni during my biochem degree, I had to walk up a hill. I was going very slow. I was about 40, but with moderate ME, at the end of many hours at my university. Suddenly I heard a clacking sound from behind me. Getting closer and closer. A frail looking old lady, maybe in her 80s, with a walking frame, was rushing up the hill. She had a wicked grin on her face as she passed me. I am guessing it was the first time she was faster than anyone in quite a while. She disappeared in the distance in short order.

 

[alex3619]

This is one of the main reasons why I have no doubt whatsoever that the deconditioning hypothesis is completely false. There is no way re-conditioning to that degree could happen overnight.

Yes, exactly. Sudden remissions are known in many of us. So is sudden decline. Any model that does not allow onset or remission within hours is wrong for at least some of us. Similarly ME can hit the first time within a few hours. Finally, there was recent research showing minimal muscle deconditioning in ME after six months of bed rest. Nearly everyone else loses a lot of muscle function in just weeks. Our muscles might not be working but its not deconditioning within a short or medium time frame. Currently I suspect muscle hypoxia is a big culprit.