Reductions in Cerebral Blood Flow Can Be Provoked by Sitting in Severe Myalgic Encephalomyelitis... (Van Campen et al. 2020)

Pyrrhus

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A new publication from Van Campen, Rowe, and Visser on the effect of sitting up in severe ME:
https://www.mdpi.com/2227-9032/8/4/394

Earlier this year they published a similar study on the effect of tilting the head in severe ME:
https://forums.phoenixrising.me/thr...ead-up-tilt-test-van-campen-et-al-2020.80444/

The title really says it all, but here's the abstract:
Van Campen et al said:
Introduction:
In a large study with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients, we showed that 86% had symptoms of orthostatic intolerance in daily life and that 90% had an abnormal reduction in cerebral blood flow (CBF) during a standard tilt test. A standard head-up tilt test might not be tolerated by the most severely affected bed-ridden ME/CFS patients. Sitting upright is a milder orthostatic stress. The present study examined whether a sitting test, measuring cerebral blood flow by extracranial Doppler, would be sufficient to provoke abnormal reductions in cerebral blood flow in severe ME/CFS patients.

Methods and results:
100 severe ME/CFS patients were studied, (88 females) and were compared with 15 healthy controls (HC) (13 females). CBF was measured first while seated for at least one hour, followed by a CBF measurement in the supine position. Fibromyalgia was present in 37 patients. Demographic data as well as supine heart rate and blood pressures were not different between ME/CFS patients and HC. Heart rate and blood pressure did not change significantly between supine and sitting both in patients and HC. Supine CBF was not different between patients and HC. In contrast, absolute CBF during sitting was lower in patients compared to HC: 474 (96) mL/min in patients and 627 (89) mL/min in HC; p < 0.0001. As a result, percent CBF reduction while seated was −24.5 (9.4)% in severe ME/CFS patients and −0.4 (1.2)% in HC (p < 0.0001). In the ten patients who had no orthostatic intolerance complaints in daily life, the CBF reduction was −2.7 (2.1)%, which was not significantly different from HC (p = 0.58). The remaining 90 patients with orthostatic intolerance complaints had a −26.9 (6.2)% CBF reduction. No difference in CBF parameters was found in patients with and without fibromyalgia. Patients with a previous diagnosis of postural orthostatic tachycardia syndrome (POTS) had a significantly larger CBF reduction compared with those without POTS: 28.8 (7.2)% vs. 22.3 (9.7)% (p = 0.0008).

Conclusions:
A sitting test in severe ME/CFS patients was sufficient to provoke a clinically and statistically significant mean CBF decline of 24.5%. Patients with a previous diagnosis of POTS had a larger CBF reduction while seated, compared to patients without POTS. The magnitude of these CBF reductions is similar to the results in less severely affected ME/CFS patients during head-up tilt, suggesting that a sitting test is adequate for the diagnosis of orthostatic intolerance in severely affected patients.
 
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I think this helps exemplify just how devastating this disease is when simple tasks such as “sitting” make a large biological change to the sufferer. Perhaps this will help the public understand
This is real interesting, as I am a person who mostly sits in this padded chair. so I feel lucky I"m not forced to stay in bed.

But I am experiencing issues with OI and POTS and certainly seem to be having too many frequent PEM events while thinking I"m not doing anything.

But this sitting IS doing.

Also curious: about the FM component here. How is FM being diagnosed? We focus on the various ME criteria, but fibro is ALSO a thing and frankly I'm surprised the percentage of severe ME folks with FM was fairly low (37% or so). I sure wonder how folks rank things like FM pain, or how it might vary. Thats just- hard to describe, it seems.
 
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Yep that's how I feel right now. Just feels like the bloods drained from the top of your body + head. Feel like I'm floating/heads just not all there.

Does make me wonder why more people don't give Mestinon a go though, it seems to work well with OI and POTS. Maybe Nimotop would work for cerebral blood flow issues, hard to say.
 
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Is there a currently a test besides the table-tilt test for OI? OI is common in ME/CFS, yet getting a positive for the TTT is rare. I'm thinking of asking a neurologist to get me a transcranial doppler, but from a search, I see some pictures that show patients in a supine position, which would not prove OI, as well as a picture that shows a patient in an upright position. I doubt any place would do a tilt test during a doppler, which would be most effective.

OI is said to be "difficult to diagnose". Well, if there's no diagnostic test available like tilt test doppler, how is that surprising? Many doctors are also under the impression that if your tilt test is normal, it disproves OI.
 

borko2100

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Seems like a pretty solid study and a good lead to research further. For example they should figure out what might be causing the reduction in blood flow and whether reduced cerebral blood flow is behind some of the typical ME/CFS symptoms we have. Also, let's hope it gets replicated by other researchers.
 

Oliver3

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Seems like a pretty solid study and a good lead to research further. For example they should figure out what might be causing the reduction in blood flow and whether reduced cerebral blood flow is behind some of the typical ME/CFS symptoms we have. Also, let's hope it gets replicated by other researchers.
There was a research scientist at Bristol university I think who seems to have disappeared of the radar. Wish I could remember his name but he was looking into hypertension in general being a restriction in the cerebral arteries or neck arteries.
He said it was purigenic or antibpurigenic signalling( I don't understand those terms) that was causing this.
The naturopath Gy , Dr klinhgadrt has said this is run of the mill in the autistic community . He says suramin will reverse the pathology.
From what I remember he said it was a reflex action by the arteries to stop the brain being damaged by oxidative stress or poisons etc.
Sorry for layman's generalisations.
I went on this hunch back then as I felt that restriction in the neck. I gave up when I realised the experts are not there yet
 
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Makes sense. When I was at my worst I couldn't even sit upright in bed. My mom had to feed me while I lied down. My cerebral blood flow was so bad I couldn't even tolerate a pillow under my head and often had to have my legs lifted to be able to sleep. After a while I could have a towel under my head and over the course of months built up my tolerance by folding the towel. After half a year or so I was able to have a flat pillow under my head again.

Ah, the good days...