Novel brain SPECT imaging unravels abnormal cerebral perfusion in patients with POTS and cognitive dysfunction, Seeley et al., 2025

[kushami]

Some Aussie research:

https://pmc.ncbi.nlm.nih.gov/articles/PMC11775248/

Cognitive dysfunction is frequently reported in patients with postural orthostatic tachycardia syndrome (POTS), possibly resulting from reduced cerebral blood flow (CBF). We used brain SPECT, an accessible imaging modality that has not been systematically evaluated in this patient group. Retrospective review of participants from our registry was undertaken to identify those who had a brain SPECT performed for investigation of cognitive dysfunction. Abnormal CBF was taken as z-score > 2 standard deviations of healthy control reference values. Patient reported outcome measures (PROMs) such as autonomic, gastric and quality of life symptom scores were analyzed. From a total of 56 participants (mean 34.8 ± 10.7 years, 88% female), PROMs indicate: moderate to severe autonomic dysfunction in 75%; at least mild to moderate gastroparesis in 23%; low global health rating and utility scores. Abnormal CBF was seen in 61% but did not differ by POTS triggers. The regions with the lowest mean z-scores were the lateral prefrontal and sensorimotor cortices. Hierarchal regression analyses found number of brain regions with abnormal CBF, autonomic and gastric symptoms to account for 51% of variances in health utility. Cerebral hypoperfusion is prevalent in those with POTS and cognitive dysfunction, even whilst supine, contributing to reduced quality of life.

Bolding added by me. In OI syndromes (as opposed to everyday or circumstance-related OI), lying down doesn’t necessarily fix things.

Dr Lau and colleagues did a previous interesting study with Doppler ultrasound showing that cerebral blood flow fell in POTS patients in response to an intensive mental task just as much as it fell in response to five minutes’ standing time.

https://pubmed.ncbi.nlm.nih.gov/33280488/

 

[kushami]

I wish Dr Lau had been able to continue his earlier interest in Doppler ultrasound scans to assess cerebral blood flow reductions. SPECT scanners and scans are expensive and require radioactive tracers. Doppler ultrasound equipment costs a lot less and there is no risk associated with ultrasound scans.

 

[junkcrap50]

Dr Lau and colleagues did a previous interesting study with Doppler ultrasound showing that cerebral blood flow fell in POTS patients in response to an intensive mental task just as much as it fell in response to five minutes’ standing time

Now that's very interesting.

Good to see more hypoperfusion studies, even if it's sort of already known with previous MECFS SPECT studies. I think Doppler studies would be able to reveal if it is an autonomic/pots mechanism of not enough blood flow going to the brain versus just an endothelial / microvascular / capillary dysfunction in the brain.

 

[mattie]

Had doppler test showing me this in 2016:

https://pubmed.ncbi.nlm.nih.gov/32140630/

 

[hapl808]

Didn't Dr Goldstein study some of this many years ago?

 

[kushami]

Yes, the Doppler ultrasound scan measures changes in the blood flow velocity, which can be used as a proxy for changes in blood flow volume. The data can be localised to some extent by scanning the various arteries going to the brain and their branches in the skull (transcranial version). That localisation is very useful in imaging stroke, atherosclerosis and aneurysm. In OI research, they look at the overall change in blood flow.

And the SPECT scan shows blood flow to the parts of the brain. It has to be done lying down, so it can’t show changes in response to orthostatic stress. But it can show that blood flow is reduced, and I imagine it could show a difference if you had someone newly diagnosed with OI, then they had treatment and were improved and had the scan again.

So both types could supply useful information, especially in studies or when following up patients to see whether treatments are working.

And all this would presumably apply to the ~90% of people with ME/CFS who have low blood flow to the brain on orthostatic stress. It would be great of someone could duplicate the Visser, van Campen & Rowe work on this topic and add some SPECT scans to get a nice confirming study and reinforce other smaller stduies done in the past.

It seems that Dr Lau’s focus is on POTS, rather than OI syndromes generally. I can understand that, as I am sure he has plenty of patients to see, but it would still be nice to have him extend his expertise to all who could benefit. I don’t know whether he treats people with ME/CFS and POTS. I hope so.

As far as I know, he doesn’t have access to a Doppler ultrasound scan in Adelaide. There is one in Melbourne, including the transcranial option, at the Austin Hospital, but they don’t have a protocol for scanning in conjunction with a stand test yet. (I nearly managed to get it done specially, but my doctor derailed things at the last minute through incompetence. I never asked for a SPECT scan as I wasn’t sure he could interpret it (he wasn’t a neurologist).

Just a reminder that I have hypertensive-type OCHOS, not ME/CFS, but there have been people with ME/CFS diagnosed with OCHOS.

 

[kushami]

@hapl808 , is that Dr David S Goldstein? I could add some links.

Edit: Found this one for SPECT:
https://pubmed.ncbi.nlm.nih.gov/24095139/

And this one for Doppler ultrasound:
https://pubmed.ncbi.nlm.nih.gov/39173103/

 

[hapl808]

@hapl808 , is that Dr David S Goldstein? I could add some links.

Actually Dr Jay Goldstein who wrote about SPECT scans in MECFS in the 90's and early 2000's in his books - Betrayal by the Brain, etc. Very ahead of his time, but it's sad that almost 30 years later we've made very little progress. If anything, I'd probably be better off going back in time to 2000 and seeing Dr Goldstein, even if his treatment protocol was imperfect.

Really hard for me to comprehend that my headaches and PEM crashes from phone calls can't be effectively managed or treated in 2025, let alone cured.

 

[kushami]

@hapl808 , silly me, of course! My mind went blank on the first name.

I would like to see everyone with ME/CFS get comprehensive autonomic testing amd treatment, because I think many people could be helped. (Of course ideally I’d like you all to get comprehensive ME/CFS treatment, but at least we know autonomic treatment exists amd we know it works to some extent.)

I have been slightly heartened by the fact that autonomic and CFS specialists seem to be working together a bit, but there’s so few people in both fields.

I was really hoping that my Doppler testing in Melbourne would start something big for diagnosis and treatment to help everyone in Australia with OI, but sadly it came to nothing.