Experiencing an atypical (for me) crash - any thoughts or suggestions?

[katabasis]

I've been hanging out on the border between moderate and severe for a couple of years now. Usually, I would experience crashes/PEM mostly due to physical activity, like having to go to a doctor's office, or having to do a bunch of food prep for myself (such as if my girlfriend who I live was sick or something and couldn't do it). And these crashes would mostly consist of physical symptoms - extreme physical fatigue, severe muscle and joint pain, some cardiovascular symptoms like hypotension and/or palpitations, etc. I've sort of gotten used to this paradigm, and obviously it's best to avoid crashing as much as possible, but I've at least learned how to manage the crashes effectively - e.g. taking gabapentin before exertion helps quite a bit, and after the fact, extra magnesium, citrate salt, CoQ10 megadoses, and skullcap seem to improve recovery. It had become rare for a crash to last more than a week for me, usually just a couple days.

But now I've gone and screwed up. About three weeks ago I tried to do a little writing, actual looking-at-the-screen writing for a couple of hours, instead of the speech to text software I manage to work with most of the time. Didn't feel too bad, so I did it again the next day. And since then, I've been in a severe crash, except it's distinctly different - almost entirely mental. I have almost no impairment in my small daily physical tasks - I can still make myself oatmeal for breakfast, feed the dog, take a shower (using a shower stool), etc., and doing these tasks doesn't feel any worse than it did at my usual baseline - nor do they exacerbate any symptoms. But anything that requires mental effort has become pretty rough. I've also gotten a ton more sensory sensitivity - looking at a screen for more than a few minutes makes my eyes feel deeply uncomfortable, and it's hard to ignore background noises I wouldn't even normally be conscious of. Oddly, there do seem to be periods of relative remission from these symptoms (I'm in one right now), but they only last for like half an hour and the symptoms don't go away entirely - maybe 50% less.

To start with, I'm curious how many of you have experienced really distinct physical vs. mental PEM states, and what the general vibe of those states have been like. I'm obviously also curious if people have found any supplements or treatments they have found particularly effective for mental PEM vs physical PEM. Also. I should note that this mental PEM is probably distinct from brain fog - I experience pretty bad brain fog at baseline, but it doesn't feel bad to push through the way PEM does, it's just a general downgrade in mental capacity without any exertional consequences.

I'm wondering whether maybe some of this mental PEM is actually tied in with eye fatigue (which perhaps is technically more a physical thing). This would explain the visual sensitivity, and I feel like I tend to move my eyes a lot when I am thinking, regardless of whether I'm actually looking at something. I actually find it rather hard to stop moving my eyes entirely, even when completely resting, the movements are almost involuntary. I have been experiencing a dull eye pain, on top of all this, but in total, it's hard to say whether this is part of the root cause or whether it's just another symptom.

I've been trying a few new brain-focused treatments over the past week to try to handle this. Haven't noticed much from quercetin/luteolin for potential mast cell issues (note that I had to stop taking ketotifen a while back, long before this mental PEM episode). Clonazepam does seem to help, but only very, very slightly - it's weird, I seem to barely notice any mental effect from it at all. It does help me sleep longer, which is nice. Dextromethorphan didn't seem to have any effect, positive or negative. I dug out my old tub of ribose, which never did much for my physical PEM, and it only seemed to make me more irritable/sensorily sensitive.

This whole situation is super frustrating - I would much rather experience prolonged physical PEM. I've gotten real good at tolerating physical discomfort, so long as I can watch movies and listen to music to keep my attention off of it. After all these years, I felt like I had sort of vaguely figured out how to live with that sort of thing. I had reached a cautious detente with my condition, but now the terms have suddenly changed. And I have no idea how long this will last - could be forever, for all I know. Thanks for reading.

 

[hapl808]

To start with, I'm curious how many of you have experienced really distinct physical vs. mental PEM states, and what the general vibe of those states have been like.

Yep, very distinct - and awful cognitive exertion crashes, sometimes delayed so I don't even realize how bad it's going to be.

I'm obviously also curious if people have found any supplements or treatments they have found particularly effective for mental PEM vs physical PEM.

No.

I'm wondering whether maybe some of this mental PEM is actually tied in with eye fatigue (which perhaps is technically more a physical thing).

For me it's not eye fatigue, because eyes closed listening to music does exactly the same. But I get that eye feeling, and it seems somewhat environmental. Not that the environment is causing 100%, but if I wear a full respirator, my eye symptoms and muscle pains get better - but it still doesn't affect overall crashes. (Yes, I've gone down the CIRS road, moved several times over a period of years with no belongings, etc.)

Tried quercetin, luteolin, ketotifen, xyzal, zyrtec, DXM, valium, ribose, and much more.

This whole situation is super frustrating - I would much rather experience prolonged physical PEM.

It is awful. It makes me not want to be alive when my illness doesn't even allow me an internal journey.

 

[southwestforests]

To start with, I'm curious how many of you have experienced really distinct physical vs. mental PEM states, and what the general vibe of those states have been like.

A mental crash spring 2006 was how I ended up getting diagnosed with ME/CFS and fibromyalgia.
Got exhausted working full time retail 2005 Christmas and never got full energy back, had to reduce from full time to part time work.
Then came that spring 2006 day where my body was okay with the physical activity of working that day, but right in the middle of using a job machine where I'd used that type of machine in various versions since the early 1980s all of a sudden I had no idea what the machine did, what the pretty colored buttons on it were for. what our home phone number was, what our address was. or how to get to home from work.
Had no idea where our apartment was on this planet, but, oddly, I could still sketch the building exterior.

Between that beginning and now, yes, there are distinctly physical and distinctly mental occasions of PEM.
There are days I can run the vacuum in a room but reading a book or focusing on assembling model parts ain't gonna happen.
There are days I can put together some things to say on places like here, but my brain is not good for reading and absorbing instructions.

Then there was the time an old school friend stopped by for a night on a cross country trip and I was good for driving us to and from the local Greek restaurant by my brain absolutely would not do the fairly simple math to figure a 15% tip.
kick the decimal point over one place to get 10%, then take half of that for 5% and put them together.
Nope, no way brain was going to do that,
Look at 30mph speed sign and make van go 30mph, yes, brain could do that but figure a tip, balance a check book, make change, not gonna happen.

And speaking of driving, there are days I can tell my brain is not up to that task at all, and there are days I can tell my brain is okay with in-town speeds but 70mph on the Interstate is a no-no.
Some of those same days my body has the coordination and all to do so, but the brain is lacking.
Some days the brain is good for the task but the body is not.


I used to be deep in to board games and miniatures games of historical and sci-fi genres.
Those days are done, some of the games were fairly simple & some were definitely complex, but in both cases my mind can no longer maintain enough concentration for enough time to do them any more.


Today I've had the radio off because I've not got whatever kind of energy is required to process the input.
I do not even have a TV.
But yet I've been okay with a couple narrowboat videos on YouTube & am obviously okay with doing this here now.
As an aside, is 11:18 pm now and it was a gorgeous day to have all the windows open and I still have most of them open and the lights off.

And now my whole being is saying time to stop writing and go click post.

 

[linusbert]

kata that sounds awful, sad you experience this new symptoms. i also do experience something similiar this year.

my recommendations:
1. get a full ear headphone for passive noise reduction (those are heavy, in sitting might be to heavy for neck muscles over time). do not use active noise cancelling. some tolerate them, i felt after 30minutes wearing them, dizzy for the rest of the day.

2. get uv and polarised filtered sunglasses of level 3 or so. the level that works on the day, but also in night, so you can still see enough, just a significant dimming.

3. get a epaper display, black and white are better than colored ones for the eyes, but colored epaper might be still much better than monitor.
a few recommendations:
- onyx tab x c , is a 13" android tablet, with remote screen technology you can use it as display for your computer: https://onyxboox.com/boox_tabxc
- basically the same but with black and white https://onyxboox.com/boox_notemax , black and white is brighter needs less light to be readable

- dasung epaper screens, those are true monitors, you connect with hdmi or mini hdmi , beware that mac devices got a own version. if you got no mac, just get the normal one. https://shop.dasung.com/collections/all
they are available in different sizes like 10 , 13" to 27". black/white usually brighter, less ilumination needed which is better for eyes,

this can make a difference. when going for any epaper device look that no "paperlike" textured screen is on top of the screen. those disperse the light which can make eyestrain. the onyx tab x c has non, but i believe the note max has such a screen. i once had one with those paperlike screen, it was really exhausting to read on, even harder than my normal monitor. so careful about that. amazon might ship those too so you can send them back.


4. on your monitor/laptop disable color dithering, look it up how to do. color dithering is the rapid switching between different colors to emulate a wider color gamut. some react to these kind of rapid movement even if its not directly visible to the eye.
there are a lot of problems with modern displays which lead to trouble. dithering is one of them, flickering another, check flicker free screens, but better go directly with epaper.
something similiar like dithering is called PWM brightness control, that changes rapidly between two brightness levels so it appears more dim, like swiching a lamp on and off in rapid succession, this flickering is exhausting to eyes.
many OLED displays come with flickering by default because of that technology.

5. install a software like flux on your device, it tones down the colors. reducing blue light , making it more redish, much much better for the eyes. this alone can do wonders.

 

[bad1080]

5. install a software like flux on your device, it tones down the colors. reducing blue light , making it more redish, much much better for the eyes. this alone can do wonders.

or write on something that allows you to use dark mode/let's you customize the colors like notepad++ or kate

 

[Dysfunkion]

Oh you get what i get, I dont get physical PEM besides from too much eye movement which is connected to my main PEM from cognitive extertion. I learned about the eye movement thing the other week from doing that in isolation to see if it triggers it and it can but it profoundly worse with any other cognitive load. I also had the same experience with writinh which I tried to do the other week. Unfortunately I can only fight a single longer passage now and then (don't know yet on how far out in days I need to space it out by). Writing is much easier than reading for me though that can start to tank me in a few pages.

I wish I knew what the mechanism is but like you modulating gaba can help a bit. In my case hops can slightly calm it down but if it's really raging then almost nothing can put a dent in it. My baseline is better though on serrapeptase and RLT but if I stop I'll likely just regress back to moderate to deep moderate depending on the time. How red my eyes are is my weirdest indicator of how bad it is but they can get worse from the increased immune sensitivity when the cognitive load with eye movement triggers it.

Maybe there is an infection in specific nerves that reactivates when the nerves are specifically used, the body can't handle it, and then you're in a PEM flare till the body gets it more in conttol again? No answers to go off so I can actually attack the root of the problem specifically causing it. Whatever it is, is highly localized though to my nervois and immune sysyem in my face/head/neck.

 

[linusbert]

reading a book at daylight conditions might be a test for eye movement crashing tendencies.

 

[Wishful]

And speaking of driving, there are days I can tell my brain is not up to that task at all,

Me too. There are days when I planned to go into town, but realize that I'm having "a bad brain day", so it's not worth the risk.

I do have days with "bad brain", and other days when my physical symptoms are worse than the cognitive ones. That's without PEM; I see PEM as a worsening of general ME symptoms.

I haven't found any treatment for the bad brain symptoms. I just wait for them to pass. Scary when they persist for more than a day or two. Definitely scarier than persistent physical symptoms.

 

[Rufous McKinney]

I have huge eye problems tied into the brain problems. Even if my eyes are closed, the aching and swollen and tearing and pooling continues.

1) I think our pupils may not be responding correctly to changes in light.

2) my eyes are very swollen; they tend to pour liquid

3) very blurred vision

4) always feels like the brain is in the same state

 

[Rufous McKinney]

so long as I can watch movies and listen to music

I"ve found that the following can happen:

1) movies........these require continuous attention, and typically run two hours. This often crashes me. Sometimes I'll only watch half the movie. I notice that I very rarely ever return to watch the rest of it (ADHD).

2) a series..... now I have a better chance of watching something as they take longer to tell the story and develop the characters...I seem to crash less, and can watch in installments.

3) podcasts, shorter videos on You Tube: this I can tolerate, in part because I do not necessarily pay constant attention, I check in and check out, my brain can wander. I crash less.

4) just listening....I can do that and a crash is less likely, unless it's all just over stimulating. Music is just more racket, half the time.

 

[Zebra]

After all these years, I felt like I had sort of vaguely figured out how to live with that sort of thing. I had reached a cautious detente with my condition, but now the terms have suddenly changed. And I have no idea how long this will last - could be forever, for all I know. Thanks for reading.

First and foremost, I'm really sorry that this is happening to you.

Second, those last few sentences really resonate with me.

I have been in a prolonged state of severely decreased mental/cognitive stamina and/or overall mental/cognitive decline. It's really scary, and even scarier because I have no one to take care of me should this become a permanent state of being.

As an example, bringing in and putting away the groceries is a much preferred physical task, as opposed to the mental task of making a meal plan and grocery list and placing an online order. The latter feels like torture and often takes several hours.

And because I'm self-aware enough to notice this, well, that makes it even scarier.

Please keep us posted and let us know how you are going. I really hope you will return to your baseline level of functioning sooner rather than later.

 

[Rufous McKinney]

Second, those last few sentences really resonate with me.

I have been in a prolonged state of severely decreased mental/cognitive stamina and/or overall mental/cognitive decline. It's really scary, and even scarier because I have no one to take care of me should this become a permanent state of being.

It feels at times, as if we made a bargain. That we can establish a detente, with the illness. But it needs to mind its manners. And if anything else comes down, well, the else had better get in the back of the line, or maybe it should change lines altogether.

I have been in a prolonged state of severely decreased mental/cognitive stamina and/or overall mental/cognitive decline.

Do you have an ability to go outside or get some sun in the early AM? I'm reconsidering if that might do something to get brain to wake up.

 

[Wayne]

I have huge eye problems tied into the brain problems. Even if my eyes are closed, the aching and swollen and tearing and pooling continues.

Hi @Rufous McKinney -- Your eye problems sound extremely challenging (to say the least). I think @Dysfunkion has used red light therapy extensively, though I don't know that he uses it on his eyes. I just ran across the following information which you may find useful.

Spoiler: Red Light Therapy For Eye Health

Red light therapy (RLT) may help protect and even improve eyesight.
It works by giving cells extra energy, reducing inflammation, and helping eye tissues repair.
Research shows it might improve vision clarity, reduce eye strain, help with macular degeneration, dry eyes, and more.
Sessions are short (about 3–10 minutes), non-invasive, and painless.

---

Longer Summary

What is Red Light Therapy?

• RLT uses low-level red or near-infrared light to “energize” cells.
• It helps reduce oxidative stress, boost cellular energy (ATP), and support tissue repair.
• Treatments are usually quick (around 10 minutes), painless, and non-invasive.

---

Key Benefits for Eye Health

• Improves retinal health: Energizes cells, supports repair, and may lower risk of degeneration.
• Reduces inflammation: Helpful for conditions like dry eyes, irritation, or uveitis.
• Sharpened vision: May improve clarity and focus, especially with age-related changes.
• Better blood circulation: Increases oxygen and nutrient delivery to the eyes.
• Faster healing: Supports recovery after eye injury or surgery.
• Glaucoma support: May help lower eye pressure and protect the optic nerve.
• Diabetic retinopathy: Can reduce stress on retinal cells, offering protection.

---

Research Highlights

• A 2021 study found that just 3 minutes of morning red light exposure improved eyesight by 17–20%.
• Benefits were seen across a wide age range (34–70 years old).
• Improvements may take about a week to appear.

---

Key Takeaways

• Screen time and aging put extra strain on eyes.
• RLT is a natural, non-invasive option that may help reduce strain and protect vision.
• It shows promise for conditions like macular degeneration, dry eye, and digital eye strain.
• Easy to use at home and generally safe.

---

In short: Red light therapy could be a simple, natural way to support eye health, improve vision clarity, and reduce common problems like strain and dryness.

 

[Wayne]

I'm wondering whether maybe some of this mental PEM is actually tied in with eye fatigue

Hi @katabasis -- That was my first thought. I had a very serious problem with eye fatigue about 10-15 years ago. I literally couldn't be on the computer for more than a few minutes. I tried using DMSO, and discovered it worked almost miraculously well for me. I described my experience in THIS POST. You may also want to look into Hyaluronic Acid.

I felt like I had sort of vaguely figured out how to live with that sort of thing. I had reached a cautious detente with my condition, but now the terms have suddenly changed.

I find your description very interesting. It strikes me as (any of us) reaching a sense of "equanimity" about the challenges we face, and not let ourselves stay "too down" or "too panicked" at any given time. I (strongly) suspect you'll regain a lot of what I would guess is a temporary situation. I think if you maintain your equanimity, your prospects for improvement are really good! All the best...

P.S. I find it VERY helpful to run an HDMI cord from my laptop to my TV. That way I'm not focusing intently at something very near to my eyes, making it MUCH less stressful to be on the computer, not only for my eyes, but for my posture as well.

It's also VERY important when doing computer work to take breaks, and look out the window at something in the distance, which gives a lot of relief for close in eye work. There's interesting (and rather tragic) accounts of what has happened to the eyes of Chinese children, many of whom are forced to work on screens for hours at a time at the expense of going out and play. I think it's a really important thing to keep in mind.

 

[katabasis]

Thanks everyone for the kind words and suggestions. I took a complete 'visual hiatus' yesterday and if that didn't make anything better, it's at least preventing things from getting worse. From this thread, it does seem like mental PEM is a distinct thing for a lot of people, and I wonder whether this might be a good factor to acknowledge when discussing lists of 'PEM busters' and such.

I don't have the money for some of the more involved suggestions like new monitors, eBooks, or red light machines, but f.lux is a great idea - I actually already use it, but it's automatic and I kind of forget it exists. I'm thinking I'll set it to complete blue light removal even during the daytime (couldn't hurt to try).

Hops is kind of a funny suggestion, but I guess it makes sense with all those phytochemicals. IIRC they're mostly GABAergic and anti-inflammatory, so I'm not sure they'd do anything beyond my normal supplement regimen. But I happen to have a few packets in the freezer, back from when I used to homebrew beer. Maybe I'll make some tea or something and just see what happens.

Hyaluronic acid is a good idea, pretty inexpensive too. And I'll have to do some research into DMSO as well, that seems interesting. I'm starting to think the eye thing is a good vector to pursue here. I feel like vision problems have always been a strong component of my CFS, or at least an indicator - one of my first symptoms before getting sucked into a vicious cycle of crashing and becoming disabled was noticing a slight visual 'lag' when driving to work. The amount of brain-power that goes into operating one's eyes is sorely underappreciated (by laypeople, at least). Whether treating this aspect of the illness is merely symptom relief, or gets to one of the roots of my recent crash, remains to be seen.

 

[Rufous McKinney]

Whether treating this aspect of the illness is merely symptom relief, or gets to one of the roots of my recent crash, remains to be seen.

I agree and need to find more solutions for this conundrum.. Thank you @Wayne for more ideas on this.

 

[Wayne]

I'm wondering whether maybe some of this mental PEM is actually tied in with eye fatigue (which perhaps is technically more a physical thing).

Interestingly, I ran across an old link in my email account to Jen Brea's ME/CFS recovery story. When I glanced at the story, right at the very beginning, I saw the following. I can see the potential for a lot of eye movement to disrupt what may be going on around the optic nerve, which could be connected with other aspects of dysfunction, like intracranial pressure and/or CSF leak.

The neurosurgeon looked at my original 2012 MRI and confirmed that yes, I had an empty sella and that I also had excess cerebrospinal fluid in my optic nerve sheath, a second sign of intracranical hypertension. There is a scene in Unrest, after I come back from my college reunion, where I collapse on the front porch, screaming. I say, “I could feel my head, swelling, pushing out my eyeballs.” Turns out, that is what it feels like to have spinal fluid behind your eyes.​

​

He further explained that in patients with high intracranial pressure, the spinal fluid needs somewhere to go. So the fluid will fill the sella, crushing the pituitary gland, and fill the optic nerve sheath. He said that while these findings were consistent with intracranial hypertension, to confirm the diagnosis, I would first need to do an MR venogram (an MRI that uses contrast to visualize the veins) and a high volume lumbar puncture.​

​

So in March 2018, after all the travel for Unrest had died down, I had an MRV. It confirmed the empty sella and the excess optic nerve sheath fluid he had seen on my 2012 MRI.​

Spoiler: Summarized Version of Jen Brea's Recovery

---

Part I: An Empty Sella

My path to a craniocervical instability (CCI) diagnosis began when a vascular neurosurgeon reached out after seeing my MRI in Unrest. Most doctors had considered it “normal,” but he noticed what others had missed: an empty sella, where spinal fluid had flattened my pituitary, and excess fluid in the optic nerve sheath. Both suggested intracranial hypertension.

He explained how pressure can push CSF into the sella and behind the eyes, crushing delicate structures. An MR venogram confirmed venous narrowing, common in this condition. A lumbar puncture briefly eased symptoms: I could read again, think clearly, and turn without dizziness. Still, my opening pressure was “normal.” He told me many patients — often with Ehlers-Danlos Syndrome — fall into a high-normal range but remain symptomatic.

At that time, I took his warning about CCI as academic. My ME had a viral onset, and I was making some improvements with treatment. Surely my illness was systemic, not structural.

---

Part II: Cervical Collar

After my thyroidectomy in 2018, everything collapsed. My ME and POTS symptoms worsened dramatically, and terrifying new ones appeared: I would stop breathing when lying on my back, collapse into immobility when turning left, and leak what seemed to be spinal fluid after even small bumps.

At UCLA, the best advice I got was “don’t lie on your head.” At Stanford, doctors acknowledged the problem but found no solution. My breathing cycled unpredictably — minutes of air, followed by long pauses. Life was becoming unlivable.

Desperate, I tried a rigid cervical collar. Though it offered no real traction, immobilizing my neck stopped the leaks, numbness, and apnea while upright. I could sit again, even sleep safely. A neurosurgeon recommended strict use; Dr. David Kaufman, my ME specialist, also suspected CCI and ordered an upright MRI.

I resisted the idea of fusion surgery — the images of halos scared me, and I thought surely someone would have caught a structural problem by now. But with multiple doctors naming the same diagnosis and my symptoms worsening even in the collar, I agreed to invasive testing.

---

Part III: Traction

In the OR, bolts were screwed into my skull and attached to a pulley. Turning my head reproduced the terrifying immobility and loss of breath I had described for months. My surgeon insisted the monitors proved otherwise. I felt dismissed and angry — I didn’t lie, and my whole presence there was because I couldn’t breathe.

Then came 30 pounds of traction. Suddenly, everything lifted. The constant pressure, brain fog, and exhaustion vanished. For the first time in nearly eight years, I felt completely normal. I turned my head freely, breathed easily, and thought clearly. It was immediate, total, and undeniable.

Fluoroscopy confirmed what I felt: my Basion Dens Interval shifted 4.8 mm, more than double the surgical threshold. My skull was settling on my spine, compressing my brainstem. My surgeon, cautious of bias, admitted the objective evidence matched the symptoms precisely.

When traction was released, everything crashed back. But now, I knew.

---

Part IV: Breathing

The next step was a 24-hour intracranial pressure (ICP) bolt. Supine, I cycled through apnea: not breathing, alarms blaring, then gasping back to life. My pressure spiked as high as 28 mmHg before falling. Upright, pressing down on my head dulled my thinking and raised ICP; lifting it restored breath and clarity instantly. Lights on, lights off.

My surgeon explained: apnea raised CO₂, dilating blood vessels, swelling the brain, and spiking pressure. At a breaking point, I gasped, CO₂ fell, and the cycle began again. He called it a “partial Ondine’s syndrome” — a broken thermostat in my brainstem’s respiratory center.

For the first time, subjective symptoms and objective data aligned. The cranial settling diagnosed under traction was also disrupting my breathing. It even suggested a connection to post-exertional malaise: perhaps PEM, like POTS or temperature dysregulation, was another form of autonomic dysfunction.

By the end, the diagnoses were stacked: ME/CFS, CCI, tethered cord, POTS, MCAS, adrenal insufficiency, dysautonomia, intracranial hypertension. Risky as surgery was, the path forward was finally clear.
After years of dismissal and guesswork, I understood what was happening to me. And that knowledge alone brought peace.

Health Update #4: Recovery is a %#&$@!
Jennifer Brea

Recovery Stories and What They Mean

At the London premiere of Unrest in 2017, someone stood up to describe how she’d “recovered” from ME through cognitive training and dance. Stories like that have always made me uneasy. They can inspire hope, but they often imply a recipe: do what I did and you’ll be well too. The reality is we still lack a biomarker, a defined cause, or a proven treatment.

That said, stories can matter. They may reveal misdiagnoses, hint at mechanisms, or point to new subgroups. And sometimes, enough stories build into a pattern. I never expected to join those ranks, but a year later, I found my pathology: craniocervical instability (CCI) and tethered cord. Surgery changed everything.

From Anecdote to Anecdata

When Jeff Wood and I shared our diagnoses, others began to pursue imaging. Since then, more than 120 people with ME have been diagnosed with CCI, with dozens more found to have cervical stenosis, Chiari malformation, or tethered cord. Some also had Ehlers-Danlos syndrome, others did not. Their triggers ranged from infection to trauma to surgery.

Outcomes vary. At least nine have had full remission of PEM and POTS, others partial gains, while some still face devastating complications. The point is not that structural causes explain every case of ME, but that these conditions may represent a significant, overlooked subset.

The Good

My late-2018 fusion and tethered cord release were life-altering. By the time I woke from surgery, my ME symptoms—PEM, cognitive dysfunction, and muscle fatigability—were gone. Aside from brief post-surgical POTS flares, they never returned.

• ME vanished. I can hike, exercise, and dance without crashing. Cognitively, I can read and write long-form again.
• MCAS eased. Food and environmental sensitivities are milder; mold and chemicals no longer dictate my life.
• Medications stopped. Valcyte, Valtrex, Mestinon, and fludrocortisone were gone within weeks.
• “Normal sick” again. For the first time in years, I can catch colds and fevers—signs my immune system is working normally.
• Strength returned. With therapy and training, I can plank, squat, and walk miles. Exercise is no longer poison but fuel.

The Hard

Surgery was brutal—three operations in six weeks, spinal fluid leaks, mast cell flares, and months of pain and immobility. Recovery was nonlinear; swelling sometimes mimicked relapse. Later, scar-related spinal fluid leaks forced me into bed for weeks.

Rehabilitation was equally daunting. There was no roadmap. Eleven months in, I finally found a sports medicine chiropractor who rebuilt my core and retrained muscles after years in bed. Without that help, I’d still be debilitated.

Where I Stand Now

I am well, but not untouched. My nervous system works, but my body still carries hardware and a history of deconditioning. I may have connective tissue fragility, though not classic EDS, and I remain vigilant about mast cell triggers.

The emotional weight lingers: eight years with ME, months of apnea, and the knowledge that so many others can’t access the care I received. Structural causes of ME were ignored for decades; I wonder what might have been discovered if medicine had looked sooner.

Recovery is not simple or linear. It’s messy, uneven, and ongoing. But it is real—and it has given me back a life I once thought lost.

 

[linusbert]

I actually already use it, but it's automatic and I kind of forget it exists. I'm thinking I'll set it to complete blue light removal even during the daytime (couldn't hurt to try).

actually it could hurt... not the blue light though which can damage retina, but it might exhaust you depening on what is causing your fatigue.
when you look at a redish surface (which is what blue light removal actually is, a red filter or a red lense) the rest in your peripheral vision still is not red, you brain needs to calculate the differences.
so in general i think its best to have the monitor set to a homogenous brightness and color setting, so it "blends" into your room ambience. look at your monitor from far away, is it brighter or darker then the rest of the light in the room ambience. same for color, is it the same color like the rest of the color tune in your room. at night when you lit up candles or warm lamps the color tone changes to redish for the whole room, then flux must be set more aggressively to match that.
so too dark, too bright, or color not matching the ambience might be challenging for your brain.

i ran my answer through ai,. ai means blue light cannot damage retina, but i doubt that. i think excessive blue light might damage it over the course of years and decades. especially when it continues through the evening and night where eyes should regenerate. also ai thinks that color temperature shouldnt be a problem for brain exhaustion, but i read in a forum regarding eye fatigue that this is exactly what some people suffer from, when color and brightness do not match the ambience.