Recording of Dr James Baraniuk's May 17, 2022 webinar, "Nociplastic pain in ME/CFS and overlap with migraine and other disorders"

[Tom Kindlon]

National Centre for Neuroimmunology and Emerging Diseases - NCNED

24 May ·




On Tuesday 17 May, Dr James Baraniuk, Professor in the Department of Medicine at Georgetown University, Washington DC, conducted an in-person and virtual presentation at Griffith University, Gold Coast Campus on Nociplastic pain in ME/CFS and overlap with migraine and other disorders.

The seminar focused on sensory complaints which are a common feature of ME/CFS. Pain is a criterion for ME/CFS in the 1994 CDC (Fukuda) and 2003 Canadian criteria, but not the 2015 Institute of Medicine Systemic Exertion Intolerance Disease (SEID) criteria. Tenderness or systemic hyperalgesia is common in ME/CFS and is considered a hallmark of fibromyalgia (1990 ACR criteria). Interoceptive sensations from internal organs are heightened and contribute to perceptions of migraine, chemical sensitivity, nonallergic rhinopathy, sore throat, sore lymph nodes, dyspnea, irritable bowel syndrome, and other conditions that may occur as part of the spectrum of ME/CFS complaints or their own individual syndromes. Studies of pain have identified 3 mechanisms: peripheral inflammation or injury leading to nociceptive pain, damage to nerves leading to neuropathic pain, and defective descending antinociceptive pathways in the brainstem that lead to nociplastic pain. Our magnetic resonance imaging studies of exercise-induced changes in brain blood flow are a model for postexertional malaise/symptom exacerbation that is the essential feature of ME/CFS. We found dysfunction in the dorsal midbrain, periaqueductal grey matter and reticular activating nuclei of the ascending arousal network. These nuclei are critical for threat assessment and respond to pain by activating descending antinociceptive pathways that shut off pain messages. We propose that dysfunction of these systems in the midbrain and brainstem may provide a unifying pathogenic mechanism to explain the heightened experiences of interoception in ME/CFS and allied conditions.

You can watch the presentation via the link below:

https://www.facebook.com/NCNED/posts/pfbid0qkeQCQa5yT23WfRB8sy4zNhd94Kd5uPQfJ3hyMnx8KKZLQESvWFddxhXvBpTeyGHl

Edit: See also some discussion of an earlier talk on the same subject by Baraniuk here

 

[Ravn]

Bump.

This can be watched by anyone, you don't have to be on FB.

A more direct link to video

https://www.facebook.com/111905763774120/videos/299243712290214/?__so__=permalink

Has anyone watched this?

I've only been able to half-listen into bits of this so far. There's a lot of dense material to think about. Just two observations for now.

1) At about 39min he talks about OI and how he (or somebody) found a significant group of pwME who had "OI" symptoms (e.g. dizziness, light-headedness) while lying down - which makes them not orthostatic any more. He thinks OI may not be as prevalent in ME as generally assumed. Anyway, those findings surprised me because I don't have "OI" symptoms lying down, nor can I recall seeing this discussed as something common. Have I just missed this or is it a new line of thought?

2) Is Baraniuk going full on central sensitisation? Or did I get the wrong end of the stick by not watching properly?

 

[Wyva]

1) At about 39min he talks about OI and how he (or somebody) found a significant group of pwME who had "OI" symptoms (e.g. dizziness, light-headedness) while lying down - which makes them not orthostatic any more. He thinks OI may not be as prevalent in ME as generally assumed. Anyway, those findings surprised me because I don't have "OI" symptoms lying down, nor can I recall seeing this discussed as something common. Have I just missed this or is it a new line of thought?

Just an n=1 story but I remember seeing someone like that in the Hungarian long covid FB group. Someone with POTS kept asking her if she is sure it happens when she is in a horizontal position and not upright and she said yes, it is horizontal. She was the only such person I've seen though.

Edit: she was talking about rapid heartbeat when lying down.

 

[Hutan]

1) At about 39min he talks about OI and how he (or somebody) found a significant group of pwME who had "OI" symptoms (e.g. dizziness, light-headedness) while lying down - which makes them not orthostatic any more. He thinks OI may not be as prevalent in ME as generally assumed. Anyway, those findings surprised me because I don't have "OI" symptoms lying down, nor can I recall seeing this discussed as something common. Have I just missed this or is it a new line of thought?

I've only got as far as here so far, but I'm finding it a bit annoying. Baraniuk seems to define orthostatic intolerance as 'feeling dizzy or light headed'. So, some of the controls reported that they felt that way when they stood up. Some of the people with CFS reported feeling that way when they were lying down and more reported feeling that way when they stood up.

He does't seem to have actually measured heart rate response. It seems a nonsense to call 'dizziness when lying down' 'persistent orthostatic intolerance'. No, it's dizziness. Then he seems to use a circular argument - 'if they are lying down, how can it be autonomic? The autonomic is supposed to be from lying to standing' as if this is some kind of gotcha moment. He says 'I'm starting to think that orthostatic intolerance is in the ear of the beholder'. There could be lots of reasons why the cases would say they are feeling dizzy when they are lying down and the controls don't.

Rather than look for reasons why some of the people with CFS are reporting dizziness when lying down, he calls it 'non-positional vestibular "orthostatic" complaints' and seems to suggest that this is all part of the 'overly sensitive' problem of CFS and other functional disorders.

He seems extremely pleased each time he introduces a new word that people haven't heard of before.

Is Baraniuk going full on central sensitisation?

So far from what I've seen, I think he is.

 

[Hoopoe]

Some of the people with CFS reported feeling that way when they were lying down and more reported feeling that way when they stood up.

I have this now. My brain feels chronically undersupplied with blood, and spending time upright makes it worse. While lying down it's not a strong effect but noticable.

 

[Forbin]

I had constant, severe dizziness during the first decade of ME. It got worse as my other symptoms got worse. It did not abate when I was sitting or lying down. However, it was not the spinning, “lightheaded” dizziness one might associate with OI. It was principally a sensation of “bobbing” forward and back. My guess is that this was due to a failure of being able to converge my eyes properly.

Think of one of those scenes in a 3D movie where an object seems come out of the screen. The forced convergence of your eyes can make it feel like the object is coming closer. If there is nothing approaching you, I suspect that improper converging can make you feel like you’re moving forward. The on/off struggle to converge may make you feel like you’re bobbing back and forth. That’s my guess, anyway.

I don’t think my “dizziness” had much to do with OI, but it might have something to do with the microcirculation of the inner ear. That is effectively what I was told at the House Ear Institute in Los Angeles.

Given the indications of vascular and/or mitochondrial impairment in the delivery/use of oxygen in the microcirculation by Dr. Systrom and others, I think it may well be that OI is not the only route to vestibular dysfunction due to local hypoxia in M.E.