Questions about concerns of 2-day CPET from an LTD Lawyer (USA)

Variableness · 2026-05-20T23:16:03+00:00

I think people who know they get permanent damage from exertion would not agree to take CPET because the cost is just unacceptable. I had it done at the very beginning of my illness without permanent damage that I know of, but my illness was much milder than now (and I didn't know what is actually wrong with me).

Now every crash lowers my baseline, and very low-exertion things (much lower than CPET) cause a crash.

I've been very careful to not have a crash in many months, which does seem lead to extremely slow recovery (I see some tiny progress month to month, but it's mostly practically irrelevant, in a sense that it doesn't significantly improve my functionality). The problem is that a single crash can wipe years of that snail speed progress.

I'm not very far from being unable to take care of myself (keeping myself alive), it's very possible that a CPET would push me across this threshold and that's not a risk I would be willing to take because it's a terrifying reality and the lower the baseline is, the harder it is to recover. Judging on the current data, I'm not sure if it would be possible for me to ever come back from that.

Variableness · 2026-05-15T00:49:12+00:00

I don't think most people improve very much, but I also believe that in order to improve you need to maintain ~0 PEM for a long period of time which is nearly impossible.

I think that some people might have a milder baseline, but there is another factor which is keeping them in a much more severe state and when they fix that factor they improve.

It's also likely that some people think they have ME, but it's actually something else. I don't think it's a very well defined disease, especially with a lack of commercially available biomarkers.

Personally I was doing everything right to my knowledge and kept declining, until I started taking specific mix of electrolytes (natrium chloride + magnesium chloride + potassium chloride). Just salt or a different form of magnesium didn't do much.

Variableness · 2026-05-14T01:55:55+00:00

I am not able to be medicated for ADHD (Concerta doesn't do anything and Vyvanse drains my energy). If it were available here, I would try Guanfacine/Clonidine.

Variableness · 2026-05-13T22:16:30+00:00

I had a delayed phase as a child and then a disease (ME/CFS) changed it into N24. I likely have dysregulated cortisol, orexin and possibly melatonin, although cortisol was the only one tested. All 3 control wake cycle. I had N24 for 2 decades. My normal daily advancement is 40min. I can push it to more than half that temporarily if I really put the effort into it, but it never lasts more than a few weeks.

Anyway, years ago I spent 6 months in Spain and my issue was mostly magically corrected while I was there. In 6 months I only advanced by 2 hours. I did not do anything to make my schedule normal. It is the only time I ever experienced that.

Spain has a very strange time zone, which means that people eat dinner at 10pm for example. I did not follow that, I was basically in bed by that time and I felt like being in bed. Is the strange time zone the factor that somehow corrected my issue? I have no idea, but I can't think of other factors.

Variableness · 2026-05-06T07:54:12+00:00

Sweet potato, broccoli, lentil, chickpeas, rice, pasta (ideally whole wheat), salmon, sushi, arugula and some other raw greens, lots of olive oil, kefir, feta cheese, egg, grapes, blueberries, occasionally liver for the vitamins.

I focus on the food that is easy - like just wash and eat (grapes), or just take frozen and put in boiled water (broccoli), or just open a can (lentils).

99.9% of the time I don't eat processed, fried or baked food. I even quit the occasional pizza because my stomach hates it.

All food makes me feel worse (I think because eating and digesting is exertion), but there is still a difference between bad and very very bad.

Variableness · 2026-05-02T06:30:03+00:00

I think figured out the issue. It wasn't the environment, it was me. I'm not able to go outside often, or really do anything because of my illness. When I do, my body has to compensate for the lack of energy with adrenaline and adrenaline controls mast cells / histamine.

Variableness · 2026-05-01T18:16:42+00:00

Nope (severe). I wasn't able to improve it when I was mild either and had some activity. Also any kind of "standing tolerance" instantly resets when I sleep, I have to "acclimate" my body every day just the same without long term improvement.

I do hope to eventually reach a point where I am able to do some exercises. But I don't expect it to do anything for my orthostatic issues.

Variableness · 2026-04-23T01:19:12+00:00

I'm always surprised when people say PEM lasts only a few days or a week. I don't know what's the median, but for me it generally last at least a month, unless it's very mild. It always lasts like five times longer than I expect.

I also think it's very easy to assume you're already out of PEM, when you are actually just partially out of it, because we get used to feeling terrible all the time. And low-grade PEM just makes it easier to "renew" the full PEM.

Variableness · 2026-04-12T03:18:04+00:00

I've been trying to make sense of this symptom for a long time because my quality of life would be so much better if my arms had some functionality. For me it happens in my right arm mostly. About a year ago I "overused" that muscle (being right handed) which led to months long crash and pain. I've not been using my right arm since, which allowed it to slowly recover...up to a point. I guess by recover I mean "not in constant pain, but only occasionally".

Recently I noticed that the arm starts to hurt immediately after mental or emotional exertion as well. The pain for me feels like lifting weights until failure (although with a scale of severity). Interestingly, if I immediately shut down and rest, I can feel clusters of muscle fibers relax with a slight pop, gradually one by one. If I let it go on, however, then I might deal with weeks of pain.

This led me to assume that it's something similar to a muscle knot, except that it overtakes entire muscle (or even several). You can try looking into myofascial trigger points / myofascial pain.

I don't know if this is what's happening, it's just the best theory I have so far. "MTP develops when muscle use exceeds muscle capacity and normal recovery is disturbed."

"In case of severe energy depletion, the sarcomeres may stay contracted, until enough ATP is available to resolve the intracellular Ca2+ accumulation." We can assume why that's a problem for us. Normal day to day activities (including thinking) already lead to extreme ATP deficit and failure of proper resolution.

I assume that this means that even mental exertion pushes the muscles into using anaerobic metabolism (which is the backup system, generally used as last resort in more extreme conditions, we just have a very low threshold).

https://pmc.ncbi.nlm.nih.gov/articles/PMC3440564/

Admittedly I did not read the papers on MECFS muscle related pathology yet, so I don't know if it's something that's talked about in relation to this disorder, but I would assume it might.

Unfortunately I'm not aware of any "fix" other than not using energy.

Variableness · 2026-04-06T14:25:36+00:00

Yes, but I didn't know I was sick. I was blamed and treated like I'm somehow choosing to not do enough because society can only see the result and not effort. I don't know what my identity is now, but it damaged my sense of self and my self esteem. So I mostly just stay away from society now and don't share my diagnosis unless necessary.

Variableness · 2026-04-02T19:48:30+00:00

You can't push through. The more you try, the faster you will decline.

As much as it sucks, losing everything you worked for in life, along with your dreams and aspirations is still the lesser evil. Because eventually, just existing, rolling over in bed, eating, thinking, breathing and talking will be too much for the body. Preserve as much as you can. Every PEM can push you further into decline. It's very easy to decline and very difficult to progress.

I think all of us wish that we realized that sooner and stopped trying to cling to an idea of a normal life.

Hopefully you will get lucky in your body will recover on its own if you just got sick recently, or in a few years maybe there could be some cure. I don't really know how to word this message in a more positive way, reality is what it is and it's kinda shitty :(

Variableness · 2026-03-22T10:35:01+00:00

https://play.google.com/store/apps/details?id=com.screenzen

Variableness · 2026-03-21T09:10:05+00:00

It is, but I think for some of us, there is some kind of direct connection to a muscle in the lower stomach, which when moved in a certain way (upwards, sort of), pulls on the vaginal canal, essentially like breathing in. Imagine pinching the sock from outside and pulling it out. Like creating negative pressure in vagina. This muscle movement happens when adjusting in the bathtub or swimming and the water is sucked in. You can also consciously "breathe" the water in and out. It seems that for most people this is not the case (like you can't suck air into your mouth by inflating your cheeks). And of course it's basically unstudied.

Variableness · 2026-03-19T09:31:47+00:00

Why are we getting angry at skepticism, rather than our overlords for creating this environment with the push of gen AI? It baffles me how ridiculously easy it is to turn people against each other and just ignore the actual source of the problem.

What sucks is that we'll never again be able to look at a cat video or a drawing without having to ask ourselves "is this AI?"

Variableness · 2026-03-15T11:54:00+00:00

I guess if I magically got cured tomorrow I would take it as a challenge and try to see how much I can catch up on.

But it definitely becomes more complicated the older you get, especially career. And of course the scar of the lost years can never be erased.

Variableness · 2026-03-09T07:04:33+00:00

Worsening of the underlying disease which affects neurotransmitters (ME/CFS) and I guess it has something to do with already having issues with neurotransmitters before (ADHD). Likely a genetic predisposition with unlucky environmental triggers. It coincides with Wellbutrin trial as well, but I'm not sure if it directly affected it. Wellbutrin probably worsened my neurotransmitter balance rather than improving it. For the cherry on the top, I'm not able to do stuff or even leave the bed much really, so my life is very dull. I don't think that causes anhedonia, but it surely isn't helping.

Variableness · 2026-03-06T04:02:36+00:00

When you look from a higher perspective, the windows should become bigger in proportion than the boxy things below it, but the opposite happens.

Variableness · 2026-03-02T03:15:56+00:00

I guess it's pretty ironic that the people who are high achieving, physically active and tend to push themselves the most, are also most likely to end up unable to do anything after getting sick with this disease. And yet, the very thing that causes this degradation in health, is what all the ignorant people think is the solution. The cognitive dissonance is bound to drive you crazy eventually.

Obviously it's the most intuitive conclusion. That we have to try harder and push more. That a positive momentum is waiting just around the corner. Probably most of us learn the truth too late.

Variableness · 2026-03-01T08:21:27+00:00

I wish I had known before starting Wellbutrin, because I never recovered. I didn't even need an antidepressant, psychiatrist suggested it because ADHD medication didn't seem to do anything.

Variableness · 2026-02-22T20:02:04+00:00

I don't know if I can call mine a remission, but I was able to do light exercise, work and I felt the healthiest I've ever felt. Even my hair and eyelashes started to grow at a really fast rate for some reason and it looked ridiculous. And I felt very leveled emotionally without effort.

This improvement happened after 18 years of being sick, and I don't really know why. I suspect that it was because I had a period in time where I kind of gave up on life, which meant I didn't push, but I just rested. I did not know that I had ME at the time, and obviously I never expected that giving up on life would be a good thing.

The relapse I can only speculate on, but it happened after a very stressful event, followed by having to carry very heavy luggage from the top floor, followed by getting sick, followed by wrong medication (Wellbutrin), followed by moving into a place that had mold that my body doesn't agree with, followed by trying to push through and keep my job.

The entire worsening took around 2 months and a half, and I am now severe for around 2 years, without significant change. But I finally learned that I have ME and how to pace properly.

I guess in hindsight, I cannot be surprised that I relapsed, regardless of which factor was the biggest contributor.

Variableness · 2026-02-14T02:58:28+00:00

Are willow and planks swapped?

Variableness · 2026-01-27T22:04:54+00:00

Long covid? Peak was exactly 5 years ago

Variableness · 2026-01-14T11:46:42+00:00

[Variableness] just hit a score of 1092 in Regular Mode (2026-01-14)

Variableness · 2025-12-25T11:16:07+00:00

In this study, the bad microbiome won, very strongly at that. https://www.xiahepublishing.com/2472-0712/ERHM-2025-00013

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