#chronic fatigue syndrome
Went out today!
BUT WE DID IT. WE MADE IT DOWN THE SLIDE
Chronic Illness Community Uniform 2k15
I haven’t kept up with this blog in the way I want to because I have been very down about a lot of things regarding my illness. I’ve gotten a lot of mail about how the positivity of this blog has helped a lot of people, and that means the world to me. This is a positive blog for supporting each other– mostly through humor. I want to keep it that way. I don’t want to post negative things here. This is a safe space, and I fully intend to keep posting the same types of content.
That being said, we all know there is a lotof darkness we need to– but often don’t– express beyond the confines of our head. It’s lonely that way, and it builds. I need an outlet for those dark thoughts. Maybe you do too.
So I made a secondary blog,Bartonella Bites, for poetry, random thoughts, images, etc, of stuff that doesn’t need to stay in the angry echochamber of my mind. Please visit if positivity just isn’t doing it for you today, or if you want to submit your own thoughts/art/poems/etc. Please understand that this secondary blog will likely be triggering. It’s a box to put our poison in.
After this post, all of my posts on BartonellaBabe will be positive again.
I love you guys. You’ve gotten me through so much. You’re the best support community in the world.
xx - bb
Please watch and comment your thoughts <3<3<3
T-minus 20 minutes until I screen this for my graduate class! Ahh!
I love how ableist ppl always tell me stuff about my illness.
But what I love maybe even a little more are ppl that are allies and tell me that I shouldn’t be talking about my disability with these ppl in the first place, because I should know by now that nothing good comes out of it.
I mean.
Have y'all heard of awareness?
How am I supposed to get word out abt something like CFS/ME, if I’m not allowed to talk about it or if I’m only talking to ppl who’re already allies?
Also: Instead of telling assholes to not tell us sick ppl what to do - no, of course tell us to not talk to them.
As if it was that easy to just skip that topic.
Everybody asks me what I’m doing, what my hobbies are, etc. How am I supposed to respond? Shall I lie?
So maybe just everybody shut the everloving fuck up and let me be upset when I come across another asshole.
Me: Well, I have *lists chronic conditions*.
Person: Oh, I hope you get better soon!
Me: They’re chronic. I’m not going to get better.
Person: Don’t be so negative!
Me:…….
Oh goodness gracious, that’s so it!
everyone’s all for disabled rights & anti-capitalism until your co-worker does the dishes slowly, or gets confused when given directions, or needs to be trained on how to do something that you think is fairly simple, or this or that or whatever lack of ability they have that makes you start to devalue them as a person and call them “useless” for not being a perfect cog in the capitalist machine
like sorry my existing makes your job harder but maybe direct your anger & aggression upwards instead of stamping down vulnerable groups who are just trying to survive and have gone their whole life being abused and screamed at for not being “good enough” or for being Inconvenient or a Burden
that feeling when you get that *italian hand* good doctor
What do you mean there’s blood tests for neurotransmitters?
Where do I find this kind of doctor???
I hate to be this person. But. You CANNOT TEST FOR DOPAMINE AND SEROTONIN IN THE BRAIN. Not the way it’s being implied here.
I’m sorry, because this comic is otherwise uplifting and I know what it’s like to think you should just be able to do stuff and then it turns out there was something actually stopping you the whole time. HOWEVER. I am seeing a lot of people in the notes going “wait you can test for dopamine and serotonin? why won’t my shitty doctor do that?”
I don’t know what happened with this OP. Maybe they misinterpreted their doctor. Maybe their doctor misspoke, or actually misunderstood the results themselves. But when you test for serotonin and dopamine in blood or urine, you are testing for their presence in your body, which is separate from their function in the brain. In fact, the serotonin test is specifically designed to detect cancer, because certain kinds of tumours release it. The dopamine test is usually looking for excessive levels as well, because excessive dopamine in your body can cause all sorts of unpleasant physical effects (something that funnily enough I have just been discovering due to trying a new antidepressant that stimulates dopamine specifically.)
There is a reason that antidepressant medication is a frustrating black-box mystery, and that reason is the blood-brain barrier, which prevents us from being able to easily test the levels of basically anything that’s going on in the brain. We can’t do even the most obvious before-and-after empirical comparisons - we can’t test serotonin levels in the brain, then take a serotonin-increasing drug, then test afterwards to see if it works. There are levels on which we don’t really know, still, how drugs like SSRIs (selective serotonin reuptake inhibitors) actually work in the brain - we’ve just made educated guesses based on as much lab work as we can do without literally opening up someone’s skull.
(Fun fact: I once participated in a study using one of the most advanced fMRI machines in the world in order to try and measure serotonin and dopamine activity in my brain, among other things. The goal was to find a diagnostic method to actually take these measurements, and to examine whether these two neurotransmitters were significantly involved in chronic fatigue syndrome. To the best of my knowledge, 7 years on, that study has not been published - there are potentially a lot of reasons for that, but one of them is quite possibly that it didn’t work. Do you think anyone would be forking over tens of thousands of pounds/dollars to stick me in a giant magnet machine if there was a blood test they could do instead?)
And just to head off someone doing a three-second search and coming back saying “BUT THERE’S A RESEARCH PAPER”… yes, there are several. Some small studies have been done, because finding a way to do a blood test and get accurate results of what’s going on in the brain would be phenomenol. Emphasis on small studies there. Thus far, the results have suggested a cautious correlation between “taking drugs that we think increase serotonin in the brain” and “serotonin levels rise in the blood” - but we still don’t know if that’s actually reflective of what’s happening inside the black box that is the skull. Even testing the cerebro-spinal fluid via lumbar puncture - which is a way more invasive and higher risk procedure than a blood test btw so don’t casually throw that out as an option - isn’t clearly correlated with neurotransmitter activity in the brain.
TL;DR:there is no blood test for “are your levels of serotonin and/or dopamine low in your brain in a way that is causing you depression or fatigue”. However, the OP’s described symptoms are very much in line with what we understand about how those neurotransmitters function - so I sincerely hope they found things improved anyway.
(Edit: just realised this comic was originally posted in 2018. I’m not going to go bother OP about it but I would be really interested to know how things have been for them since then.)
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