Why is ME energy-related symptomatology so different from diabetes?

[leokitten]

I did ask here sometime ago, and a couple of people replied that they lack the muscle impairment, but had other common ME symptoms, so it's not just me. It does sound like a very small subgroup.

Like me, others have reported being able to lift weights, ride bikes, etc, at the same level as pre-ME. That qualifies as evidence. In proper scientific studies, there may be a bias against people who don't show the muscle impairment (disqualify for the study), or perhaps we're just so rare that we haven't showed up in studies. Maybe in a large study, there's a graph with one point way out from the others, and it just gets dismissed as a measurement error or whatever.

Just because we haven't been covered in a published paper doesn't mean that we don't exist.

Very interesting and I apologize I’ve never read or heard about PwME where physical activity is not majorly affected.

So you can exercise and do physical activity to your hearts content and it has no effect on your symptoms? What are your symptoms?

When I am at baseline where I haven’t overexterted much prior and do not have much symptom buildup I can walk and do some physical activity like running errands without any immediate issues. But the physical (and mental exertion) to do this adds up and with energy deficit symptoms eventually start increasing.

 

[Learner1]

No offense to @Learner1 but where is the evidence that there are PwME that have normal aerobic glycolysis or more broadly no metabolic abnormalities?

If I’m not mistaken, the Norwegian study showing impaired aerobic glycolysis and other findings was one of the largest ME cohorts ever studied. Their findings were also more or less corroborated by studies published by Australian and US research groups.

No one has shown yet that there is a subgroup of people with ME who have no cellular metabolic abnormalities.

I'm having a bad week, and am not in the mood to look it up again, but I dug into it before I answered, and found a few sources that backed up my position. One problem with the studied to date is they have different criteria for subjects, so its not an apples to apples comparison.

 

[Wishful]

@leokitten , yes I can go for multi-hour walks or bike rides without any form of ME-impairment. I usually saw and split my firewood with handsaw and axe. I've spent hours at a time last summer shovelling soil. I rate my physical strength and endurance at more or less my pre-ME levels. Others in my ME subgroup have reported being able to do heavy bodybuilding exercises, way beyond my levels.

Activities that my muscles are used to usually don't trigger PEM, so a long walk is safe. Activities that strain my muscles beyond normal movement, such as climbing a ladder or using my arms over my head, do trigger PEM, and it only takes a few minutes of such activity to do so, though there is a ~24 hr delay between activity and PEM. Last year I discovered that cumin (curry spice) effectively blocks that physically-induced PEM, with a level tsp blocking PEM for 3 days.

Cerebrally-induced PEM, from driving or socializing, triggers my PEM after a much shorter delay (half an hour to a few hours), and isn't blocked by cumin.

My main baseline ME symptoms are mental lethargy, malaise, and perceived (not physical) muscle aches. These are often accompanied by slightly elevated temperature (.2C to 1.0C) and a feverish feeling; my temperature also drops more than I think is normal (down near 36.0C at times) in the morning. In the early stages of my illness, when I still felt more or less healthy between flares of symptoms, my oral temperature was almost always 36.65C; very stable, so I consider my greater variability now to be an ME symptom.

 

[lazzlazz]

Lucinda Bateman has written about something like this. Essentially, the idea is a CFS patient needs to stay below their personal anaerobic threshold. Where that is varies greatly across patients.
See http://www.iacfsme.org/portals/0/pdf/cfsandtheexcerciseconundrum.pdf

"There is no doubt that my hundreds of patients who meet the CFS case definition exhibit a wide
spectrum of exercise tolerance" ...
"Staci Stevens, MS, an experienced CFS exercise physiologist in California, instructs her patients to
wear a heart rate monitor with an alarm to notify them when the heart rate has climbed to a
predetermined level. She measures a CFS patient’s anaerobic threshold objectively during graded
cardiopulmonary testing, notes their heart rate at the anaerobic threshold, and then uses that heart rate
value to estimate the anaerobic threshold during physical activity. It is typically somewhere between
90-110. (Linda’s was 80!) Staci counsels patients not to exceed that heart rate during physical activity."

I came to this understanding for myself, based on my own personal experience, before ever seeing anything Bateman had written. I eventually came across a statement about this in a powerpoint of Bateman's.

I can walk for fairly lengthy periods of time - I just can't get my heart rate up too much. If it seems I'm in a lower-energy CFS period (it seems to wax & wane somewhat with me over months, roughly from 65% -80% of what I feel like used to be normal), I can't walk as much - I'll get the PEM. I have to really pay attention to my body & not push it.

I may not completely avoid PEM, but it's fairly mild, and for me, the benefit that comes from walking, in the form of exercise & meditation, makes it worthwhile.
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About this statement in the OP: "Why do we get so many symptoms that are so intense and these symptoms are so disabling pretty much from the get go?"
This isn't true for everyone. Many with CFS have slow-onset. Most take a lot longer to get a diagnosis, because the change is so gradual. Thus, these people are undercounted. I'm one of the people who had a slow onset.
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My experience is similar to Wishful's (see a few posts above) - socializing, especially when it's with people other than close, trusted friends (but I have to limit it even with them), triggers PEM for me, too.
"Cerebrally-induced PEM, from driving or socializing, triggers my PEM after a much shorter delay (half an hour to a few hours)"

I can't shovel soil for hours as Wishful can. I can do things like that in small bursts, but end up resting between. If I push it too much, the PEM is more noticeable - I won't be able to do as much over the next few days.

 

[Wishful]

I find that even high-intensity activities, such as hill-climbing, that has my heart pounding and my lings gasping for air, don't seem to affect my ME symptoms, or necessarily trigger PEM. My observations seem to indicate that it's muscle damage (torn cells, which activate the T-cells) that trigger my physically-induced PEM, not aerobic rate. However, it's important to note that I'm in that small subgroup without the common physical limitations.

 

[ellie84]

I have been wondering the same thing since I started monitoring my blood sugar because of impaired carbohydrate tolerance and reactive hypoglycemia. Why do I feel like hell whenever my blood sugar isn't between 70 and 100, while diabetics can feel perfectly fine with 300? Also, why is my insulin curve normal, if my glucose curve is both too high at 2 hours and too low at 4 hours? I know very little about the technical stuff, so I'm wondering where does all that glucose go and why, if it's not because of insulin?
Also, interesting stuff about anaerobic threshold there. I looked online for an estimate of my anaerobic threshold. It should be something around 93. But my resting heart rate is around 80-90. Then this means it takes me a walk from the bed to the kitchen to go above my anaerobic threshold. I've been having palpitations almost daily for hours. I still have to get me a reliable heart rate monitor, but the times I checked HR was between 90 and 95 and I was doing nothing, lying or standing, but not doing anything in particular. What does this mean?
Lots of questions and no answers.

 

[Rufous McKinney]

but the times I checked HR was between 90 and 95 and I was doing nothing, lying or standing, but not doing anything in particular. What does this mean?

Could your heart rate be influenced by autonomic dysfunction? I sometimes experience really high BP abruptly and really have no idea why....homeostasis is just not very- homeo....

 

[Rufous McKinney]

I find that even high-intensity activities, such as hill-climbing, that has my heart pounding and my lings gasping for air, don't seem to affect my ME symptoms, or necessarily trigger PEM

Well, in contrast, I walked three short blocks- pushing the stroller. Felt fine doing it, thought I would be OK.. Now in Day 3 of PEM....from this short jaunt....plus two loads of laundry....the stairs six times.

 

[Rufous McKinney]

From my understanding, most people with diabetes do not even know they’ve been living with it for years until they see a doctor and find blood glucose levels well above 200, or they go because they get their first diabetes related symptom. So you can see it’s very different from ME because you don’t really have any clinical symptoms for a long time yet your body is completely resistant to glucose.

I experience very weird yucky short duration symptoms I attribute to drops in blood sugar. Since it seems to happen when I Needed to eat something...I think its a blood sugar thing. It feels really awful...but describing it is hard....as it only lasts for- a minute...during which one would rather be on some other planet..

 

[kangaSue]

I sometimes experience really high BP abruptly and really have no idea why....homeostasis is just not very- homeo....

A relative of mine had this issue, turned out to be hemochromatosis

 

[Wishful]

Now in Day 3 of PEM....from this short jaunt....plus two loads of laundry....the stairs six times.

Maybe it was the stairs, or the handling of laundry that triggered your PEM. If I hiked for 6 hrs and climbed some very steep stairs, I might have gotten PEM from the minute or two of stair climbing but not from the hiking. For me it's the specific muscle contraction--whether it tears muscle cells or not--that seems to trigger PEM. Tear muscle cells -> activate immune system -> PEM.

It might be different for other people. I do not consider myself a standard case of ME.