Fatigue is common among older people. Finding its cause is important. WAPO

Mentions MECFS

https://wapo.st/3ZwoAu0

 

Let me guess we've now gone full logic-warp into if we fix MECFS 'fatigue' then they'll sell that as a cure for 'feeling old'?... wonder if there is anything else that tends to increase/decrease with age but might be more specifically described or measured than bucketing that as 'old people are fatigued'

Poor granny ending up with the 30yr old who just broke up their relationship landing on them 'determined to make them feel better by doing daily tai chi'. Although it will be interesting watching the later boomers being less likely to bite their tongue to their faces - the power is very much on the other foot re: old people vs young compared to the horrible position those with chronic illness are expected to politely weather as if it isn't clueless bigotry.

It just sounds like another of 'those things' where all these 'well' people (not biomedically, physically ill) who read magazines when there is nothing wrong with them but kid themselves they feel like new people for doing nutri-bullets for a month at new year, or that they 'cured' low iron, just like others have, 'by upping their spinach' when they were feeling bit tired. When actually they are getting the biggest boost in 'wellbeing' (feel better in themselves but it is a different kind of 'better') from what I find the strangest human tendency: to grow their own sense of 'feeling good abot themselves' by assuming someone else is less 'able' or 'stupider' than them, or 'their problems are eminently less bad and more fixable if only they had ten secs of your slapdash non-genius presumption' etc even if you have to rewrite or talk over truth for that.

 

Another one who is choosing not to 'get' what PEM is.

I do think that s4me, forwardME and all allieds probably are needing to come together on getting that PEM definition differentiated and underlined - for research and for these silly anecdotes and discussions. Because it seems a key strategic window before - as the BPS would love - it is disappeared back away into being some form of tiredness after exercise. And who cares how much more blaaa

Anyone who talks about 'increasing stamina' these days in anyone or any topic around 'PEM' should be called 'thick', dangerous and feel embarrassed enough that they should enroll on emergency retraining in what they don't know and have got harmfully wrong way round.

The definition of PEM/PESE-based illness ie ME/CFS is 'inability to increase stamina/get fitter'.

 

Some PWME do not have that inability. I could and can definitely increase my stamina by physical exertion. Other people continue to do bodybuilding. Thus those limitations are a common symptoms of ME, but not an absolute condition of ME.

 

Interesting - so they can increase their threshold by pushing it? or just by 'keeping at it'? The bodybuilding part is really intriguing given the ripping aspect of that.

I found I could deceive myself to try and increase my stamina for 6months followed by it then becoming clear I'd actually deteriorated myself. ie the cardio stuff was probably obvious (and would be now there is info on it) just from the data going backwards from the start. the muscle-based stuff I could've kidded myself it 'built' but actually ended up causing issues long-term. In fact you just start spreading out sessions further and further apart and going backwards because the condition of the rest of you isn't doing well (putting it all into that one thing).

If it hadn't been my body it would have been fascinating as someone who'd done the athletic thing where you can nonchalantly 'just keep turning up' and slowly you get better at things, your body just draws up. It's the bit that has been missing and it is strange to even acknowledge it because it is so weird for it to be missing, because it is a medium-long term thing you expect 'will just happen one day' and so you only realise it on the looking back.

It may be different if it is 'within threshold' ie if you are mild enough to be able to do things that are big enough and rare enough your body recovers within a certain timeframe, but the 'getting back on it to rip muscle' or 'push through' that getting fitter involves - that's the one bit that I could say was 'spot on'. Making yourself walk/cycle/climb or whatever every day, no matter how you felt would be another ditto

 

"Resting" in the conventional sense is not an appropriate word for us, as well. There is an implied sense of recovery in the word "rest". We don't recover; we just try to stop before we make ourselves worse. At best, we stop because we can do no more. But there is little in the way of recovery. If we're lucky we can eventually reset to already absurdly reduced levels. We don't rest, we stop.

 

As people age they produce less and less stomach acid. This is the cause of indigestion and heartburn in many people, despite them usually being told they have "high levels" of stomach acid. And yet, the older people are the more likely they are to be prescribed drugs (PPIs and antacids) to reduce or stop their production of stomach acid. This leads to low nutrient levels, which then leads to fatigue. There are non-patentable drugs available which work well as artificial stomach acid. But PPIs and antacids make big pharma billions every years so indigestion and heart burn are here to stay.

 

Well put: "We don't rest, we stop."

 

Agreed. And b12 declines but also lots of other conditions or issues tend to start featuring, older people sleep less and so on which could all produce fatigue which could actually be different types and things making for really interesting research and insight probably

 

Yes. Each spring I try bike riding again. Winters are 6+ months here, so I have to start small: a couple of kms, then a bit more, but eventually I can ride 50+ km without problem. When I started shovelling my driveway this winter, the first 50 m or so convinced my arms and/or back to stop. The next day, 100 m was the stopping point. After a few days, I could do maybe 300 m and could probably continue, but I don't want to really overdo it. So yes, ME doesn't stop me from increasing my endurance. Back when I still had PEM, I could increase my threshold for it similarly.

I was surprised about the bodybuilding too. I'd posted a question or poll on Phoenix Rising, and one of the responses was from someone continuing to do serious bodybuilding. Of course there's no way to prove that he had genuine ME or that he was doing bodybuilding, but it seemed genuine. I vaguely recall a few other people reporting the ability to continue significant physical activities. While that's only a few people, that's from the few people who read these forums and make the effort to post, so there's probably a significant percentage of PWME who lack the physical limiting symptoms.

Is this subset lacking a common pathway that leads to physical limitations? Do we have a rare counter mechanism? I don't know, but my experiences make me believe that the physical limitations are a (very common) downstream effect of ME, rather than part of the core mechanism.

 

I think the requirement for PEM was made without being aware of the (uncommon? rare? very rare?) exceptions. I cured my PEM, but I still have the other ME symptoms, unchanged, so does that disqualify me for ME, or just show a flaw in the criteria for diagnosing ME? Since I managed to block that pathway for PEM (accidentally, via cumin), isn't it possible for other PWME to block that mechanism accidentally without knowing it, before even experiencing PEM? Maybe they love curry or Mexican food, and the cumin prevented them from ever experiencing PEM. Maybe it's also possible for someone to develop ME without activating that pathway to PEM (genetics, epigenetics, unusual brain development, etc). Since my PEM is blocked, yet I still have the other symptoms, I consider that strong evidence that PEM is a downstream symptom of ME, not a core component of it.

 

What are M.E symptoms that distinguishes it from other illnesses?

 

Good question, if PEM isn't the defining one. My ME symptoms were primarily brainfog, lethargy, and malaise, along with various unexpected intolerances. I certainly fit the criteria for ME while I had PEM, so I don't think that curing one symptom changes it to a completely different disease.

 

This comment is mostly not about ME but about older people and fatigue. One of the issues that contributes, probably to a varying degree, is the loss of capacity to convert CoQ9 to CoQ10 which typically begins around 50. CoQ10 supplements might help for older people. There is some limited evidence it might help with ME.

Personally I have done better on it, but I am not sure I did enough better to justify the cost. I am retrying it again now that I am over 60, and it is noticeably helping. This might not be due to any effect on ME though.

 

I've tried mito supplements many times (carnitine variants, Q10 etc) and they make me distinctly worse. Fatigue and brain fog increased significantly. I've seen some patients saying they help, i wish i was one of them.

 

The first time I took a dose in about 1993 it threw me into a bout of amnesia for a day. We can indeed have adverse effects. ME is so complicated its impossible to make completely reliable assumptions about any treatment.