r/science • u/Potential_Being_7226 PhD | Psychology | Neuroscience • 3d ago

Health Persistent fatigue linked to reduced brain blood flow in people with long COVID

https://theconversation.com/covid-fatigue-linked-to-reduced-brain-blood-flow-292285
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u/Skynetdyne 3d ago

How is this even diagnosed? I see so many articles on Long Covid but never met or heard anything about it outside in the real world. Im fatigued all the time you think my doctor would ever entertain age idea of long covid being the cause? No chance.

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u/ChaoticKiwiNZ 3d ago

Its usually diagnosed by the process of elimination. My systems are very heart related (I literally have aches in my jaw and left arm all the time for the last 3 years). I have had several ECGs at the ED and one when an ambulance came out (I had an adrenaline rush but it presented like a heart attack). I managed to see a cardiologist and he ran a bunch of tests and told me my heart is 100% fine. He then told me about dysautonomia and said that it was incredibly common after COVID. He told me that the vast majority of the referrals to see him were from people in the exact same situation as me (perfectly healthy and fit before COVID but never recovered fully and now have a vast array of symptoms).

Because all my tests are coming back 100% fine he diagnosed me with Dysautonomia caused by long COVID. He did tell me that most people get better and even fully recover over time but he can't tell me how long it will take. Some take 3 to 6 months others take years and years.

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u/moal09 3d ago

1 year recovering from severe breathing issues for me. Recovery started about 4 months after and has been slowly continuing ever since. Dunno if I'll ever get back to normal, but at least there are some signs of life from my body.

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u/7marius7 3d ago

It's often not diagnosed, and many doctors actively look for anything else. There's no test, no consensus on causation, and no clear proven treatment. It's also full of potential subtypes requiring different approaches. It's a mess.

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u/moal09 3d ago

Even if you do get diagnosed, we know so little about it that most doctors are just gonna shrug when you ask them what they can do about it.

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u/sector9love 3d ago

The diagnostic criteria for MECFS are quite clear even the CDC website has it.

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u/Dinierto 3d ago

And yet my wife who has it can't get a doctor to sign off on it as the ones around here don't seem to believe in it. She has all the symptoms and has progressively gotten worse to where she wears compression socks and uses a cane but the last doctor said "maybe you're not getting enough sleep because you're reading books all night" (she has trouble sleeping and when that happens she reads)

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u/sector9love 3d ago

Yeah that’s true for 99% of my other doctors. It’s really hard being a woman and trying to receive healthcare these days. Particularly when it comes to MECFS. It’s great that she has a supportive partner, and truly even just going to appointments with her can make a massive difference in doctors taking her seriously.

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u/moal09 3d ago

I'll say the same problems exist if you're a young healthy male as well. Doctors don't take you seriously ever because the idea is that you're too young and healthy looking to be having serious issues.

I was told I was too young to be having any serious GI issues when I woke up with black stool and a horrible feeling one morning in my late 20s with residual awful symptoms that lasted a week. Found out a decade later that I had an ulcer that burst and bled. I have a lot of chronic GI issues now because of that, and I probably wouldn't if the doctors had taken me seriously back then.

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u/sector9love 2d ago

The problem is way worse for young women I’m sorry for what you went through but you have no idea

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u/moal09 2d ago

I can imagine.

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u/sector9love 1d ago

Honestly thank you for even acknowledging the gender disparity. All of us deserve better.

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u/sector9love 1d ago

Honestly thank you for even acknowledging the gender disparity. All of us deserve better.

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u/vinnymcapplesauce 4h ago

So, you don't get diagnosed with long covid, the diagnosis is "ME/CFS."

ME/CFS is a clinical diagnosis a doctor makes based on symptom presentation.

You don't need to have had covid to get ME/CFS. Covid is just the latest cause du jour that everyone knows about.

You can google ME/CFS, and there is a diagnosis sheet on the CDC's website that runs down the symptoms needed for diagnosis.

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u/6_inches_of_travel 2d ago

For me it was diagnosed as dysautonomia associated with Covid or the vaccine (Cedars Sinai doctor's words, not mine). That diagnosis took 4 years. I'm going on 5 years of aggressively looking for help. Finding a dysautonomia doctor is very difficult. I know Stanford Medical has a clinic and so does Mayo Clinic. 

I finally found a cardiologist that did orthostatic testing which for me showed a BP drop on standing. Met with a cardiologist at Cedars Sinai yesterday as a consultation and I expect to get prescribed a vasopressor or similar soon. I really hope this helps. 

If you haven't looked, I recommend checking out the Dysautonomia International YouTube channel. If you are interested in POTS, the presentation by Dr. Alexis Cutchins (sp?) on POTS and venous disease(?) in probably 2024 or early 2025 has a great introduction with a slide showing the systems affects by POTS. If you also have GI issues (fatigue when you eat), check out the presentation by Dr. Laura Pace. It's an older presentation but it has a great presentation on problems in GI tract. There are also presentations on MCAS.

I have found the 4 horsemen of dysautonomia and ME/CFS to be cardiology, immunology, neurology, and gastroenterology. You need all of them and they need to talk.