Who said: don't bother testing patients?

In our defense though, it is actually genuinely hard to take note with precision of what is going on because of overlap and then there is another layer because there sometimes are no words for what we feel, what we feel and notice may not be the most important thing to talk about, and the words I use to describe something may have a slightly different meaning than yours even when they are literally the same words. I cannot communicate my most horrible sensation properly, but the closest I can get is 'I think my brain feels like it is currently dying, as if something was burning holes into it from the inside'. Maybe that is part of your brain fog adventure, and maybe it is not...

It seems so simple when you put it that way. Genius level elegance!

I just wanted to add that it appears to me this is true down to very basic levels - I can watch 3 different 20minute videos a lot more easily & often than one 1hour video on the same topic, and read a couple pages in several different books much more easily than the same amount in the same book. I do wonder if this has to do with which cells are used to store or process stuff... I don't even know if it has to do with the type of information because I tend to read on entirely different topics when I switch around.
You could be a dear and go all Stanford up in this if it is feasible . Take an essay of e.g. 12 pages, break it down into 3x4-page essays and give them to people who cannot get through the first essay in one sitting, maliciously tricking them into thinking they are different entities. Measure location of relevant metabolites on the fly while doing so (or do other relevant science, e.g. on effect of OI perfusion confusion cold fusion idk you're the professional I'm obviously just making all of this up as I write). Another group obviously gets to read the entire thing in one sitting with same stuff being measured.
Upon completion, receive and for effort, or if preference towards is made known beforehand. Sorry, going off on a tangent again, can't focus on one thing for too long.

 

Good breakdown. They do feel kind of different and I see a lot of myself in those 3 different paths.

Vocabulary is such a big problem with this disease. We're sort of stuck in gaps in basic terminology because medicine simply doesn't have words for it. Being sick with the flu doesn't really have any other word for than "sick", but it's not accepted as is. You can't ever be "sick", you're only ever "sick with something". But how does anyone ever describe the flu in any term other than being sick? That's how terms like "fatigue" creep in, even though it does not describe the experience at all.

Same with brain fog. What the hell kind of term is that? It means nothing important to anyone who isn't deeply familiar, and yet it's a devastating symptom that makes every single action in life unbearable, including the action of seeking medical care. It's severe cognitive impairment, and yet without fail whenever I mention cognitive and memory issues to physicians the only response I ever get is reassurances that it's not so bad. I don't give a damn about reassurances, I'm explaining a severe symptom. If I want a cuddle I'll grab my dog thank you very much.

And PEM may be the worst of the lot. "Malaise" is often used as an analogue of flu-like symptoms (which can't be used somehow outside of the flu) but it's so trivializing and a very flawed description.

So the top 3 symptoms of this disease fail to be understood not because they are so complex or mysterious but largely because the proper vocabulary does not exist to describe them properly. It's so silly to be stuck over something this fundamental and there's just no way to address this because it's a wholly chaotic process to just agree on common definitions.

 

Hey guys -- immune function drops right before menses. And drops in immune function seem to make us feel worse. (Perhaps.) See here: https://www.s4me.info/threads/golden-hour-month.6603/

 

That's why I started using "sponge brain" or "zombie brain" (do zombies have a brain? - whatever, most people get it). In fact I didn't understand brain fog myself and tried to explain how it feels to me.

 

Honestly though, it's that I've never tried to parse it out like this. These conversations have the potential to be really valuable.

This is a test of pacing for cognitive function! Has anyone... ever done this?

Every time I think we've scraped the bottom of the barrel on what we as patients know but there's no research on, there's a sub-barrel beneath that barrel.

 

SO glad you brought that up, because if we wanna be really rigorous about it we need to establish what our non-crash baseline from which we are operating from is to discern if we are just wobbling around on 3 (or potentially more) paths to crashness to varying degrees or if they are more or less add-ons to whatever our 'normal' is supposed to be. Something I've been trying to figure out is if my OI gets worse whenever the weather is about to change rapidly and I think I've tied it to jumps in barometric pressure, so maybe that is another way to crash which is difficult to tackle and confounds other data if I am not that unique about it.

I'm sure you guys will figure all of that out, I'm off to bed

...

 

I only got the minor thing where muscle fatigue could actually be in part responsible for the brain fatigue. IIRC, if muscles are 'stuck' in a position too long or cut off from sufficient blood supply for some other reason they can start to send pain signals (relaxing muscles takes energy as well and all that but I am sure you know more about this than I do anyway). Since pain is, as far as I know, mostly measured by a change in signal... whatever it technically is, strength frequency etc, you won't feel it as acute pain anymore but are basically DDoSing your... whatever part is responsible for processing those signals. So the brain dysfunction (if any of what I wrote is actually a thing and not me misremembering/-understanding stuff) could be at least in part mediated by the muscles. Maaaybe that could also explain part of the relapsing/remitting thing because you can have less muscle dysfunction on one day because you rested up, re-trigger it via exertion and thus have a bad time afterwards.

But this isn't so much poking a hole into your theory as it is providing an adjunct mechanism that would give it more weight. I think.

 

TOTALLY YES. THIS IS A THING.

ANOTHER THING NO ONE HAS RESEARCHED, but I found it on my own by plotting my symptoms over time and lining them up with the weather reports! And found four other patient forums (with different chronic diseases) who talk about this!

Patients only, of course! Why would scientists think this would be interesting?

 

Well, let's be real here, how the fudge would they possibly know there is something to look at? Oh, right, we gotta figure it out first and tell them about it because no one is randomly checking... brain natriuthingy peptides? What actually fits the timeframe? I feel like shit for a day before the weather changes when the drop in pressure already has occured and it takes about 2-3 days to adjust. Almost bedridden during that time. As if something deep inside my brain is... umm.. kinda lumpy, I guess? Words. Again. Lacking them.

What other diseases were you looking at when you found out?

 

Yes. Low barometric pressure is a huge issue - used to also spark migraines ( though not so many of these now)

 

By. talking. to. us.

 

I saw mostly illnesses where breathing difficulties were a major component because that was what I noted being extra-special-awful in my case. So I saw forums on asthma, COPD, and eventually fibromyalgia that mentioned this. Two or three asthma forums did.

 

Woah, there. That's actual patient engagement. Heresy! Science should only exist in a vacuum, especially medical science, which should assume their object of study is a perfect sphere in meat space and preferably silent and obedient.

 

I was out Christmas shopping at the weekend, the first time in weeks I have spent any time up in my wheelchair. That night my legs were burning and aching much worse than usual. It was my muscles that were affected and it feels like a build up of lactic acid.

I know we talk about crashes, but they are not all sudden drops for weeks. I have had that, and the sudden drop in ability that has never gone away, but I have microcrashes if you like. I go to pick up a cup but my hand doesn't work. It gives me a shock like using the remote for the TV and nothing happening. I wait for a few seconds (or minutes) and then I can go. This is a sign I am not doing so well and have to be careful. The same thing is repeated on larger scales as well which leads to episodes of paralysis or blindness, eyes are affected as well, which can last hours. I may be forced to complete bed rest, but resting relieves the paralysis.

I believe it is to do with running out of available ATP. If we run out of visual purple in bright sunshine we cannot see in dim conditions until we have made some more and it has always felt like that.

 

I'm laughing AND crying on the inside.

 

My mom and I started calling these 'mini crashes'. Because a "real crash" is super-intense, just not on the same scale as these small-but-definitively-noticeable downturns. (We call them 'downturns' sometimes, too.)

May I suggest that the inability to initiate movement might be a dopamine issue? I've had some real success with supplementing dopamine-supportive stuff.

I had one episode of partial blindness in the right eye. They're super, super scary and I'm so sorry you went through this.

Mine was really, really clearly linked to eating a live pathogen (fermented stuff with live cultures). I ate it during one of those optimistic moments when you tell yourself that you've been doing better lately, anyway, and all that ME nonsense ain't gonna stop you.

 

Sorry folks, had to reschedule first blood draw because my old doc won't take this year's insurance... infuriating. Friday now. Better be able to draw soon or we're gonna lose whatever autumn bump there may be.

 

Blood draws achieved.

I was rather shocked at the blase, "yeah, sure, whatever," I received.

Microexpressions of frustration, incredulity, boredom multiple times throughout what couldn't have been more than a 5-10 minute conversation. Weird, because I was really just there for the draws, didn't have any symptoms I was asking her to address. Just talking about a chronic illness is apparently enough to bore a clinician to tears.

She did not ask me a single thing about ME except 'so what are your symptoms', which is rather a minefield.

Then she said, standing up and getting ready to go, back in small-talk mode: "oh, I see you moved here from quite far off."

I told her I'd moved in order to work at Stanford on ME.

It became clearer how wholly she'd dismissed me only once her eyes clearly flared in shock and she tuned back in. Cue instant code-switching as I mystically transformed in her office! From "one of those patients" to "a Science or Medicine personage, and therefore a reliable narrator of my own experience".

Geez.

I asked her if she'd heard of ME before she met me, and she said 'no'. I tried 'ME/CFS'. She said 'no'.

I said, "I'm involved in two CME projects. Maybe you could take one of them and know more!"

"I'll look for it!" she said, smile very, very wide.

Right you will, I didn't tell you anything about them.

"Good, your nurse already has all the information," I said, and left to go to the vampire's downstairs.

Every time I talk to one of these people I feel like I've been drained in more ways than one.



But mission accomplished: CBC and Vit D taken every two weeks starting from now.

 

Wrong thread, lol -- this has to do with the Golden hour (month) thread where I'm talking about monitoring blood values from mid fall to midwinter. Sorry!