USA: Dr Peter Rowe MD
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Ash
Senior Member (Voting Rights)
I’ve watched or rather listened to the whole episode. It’s pretty slow paced so not too difficult to follow. I found it interesting as I’ve OI.
Peter Rowe MD is in favour of lots of experimentation to improve his patients condition and function with their OI. He seems like a lovely fellow.
It wasn’t quite clear to me if PR s view was that all this only applied to people with ME with specific OI diagnosis in addition to ME, or whether the treatments or some of these (non pharmaceutical ones perhaps?) were considered to potentially apply to people with ME without extra diagnoses where they had OI symptoms. It may be that this was covered and I zoned out for that.
The host said some good stuff about the importance of not triggering PEM and the danger of exercising beyond capacity.
However she did say right at the end that people with ME weren’t getting sufficient oxygen to the brain.
I am right now seeing stars and experiencing dizziness every time I stand up. So it seems perfectly plausible to me that optimal oxygen delivery to my own brain may not be occurring. Or even that this may be to some extent a factor in this illness. However while it may be reasonable to suggest that this may be occurring, in one’s own view, it’s not a known fact.
This over reach may cause the audience to question the reliability of the narrator as a source. No small inaccuracy to present the unknown as the known.
This confusion undermines the message that she so eloquently articulated earlier in the video about known harms to people with ME subject to inappropriate interventions.
Peter Rowe MD is in favour of lots of experimentation to improve his patients condition and function with their OI. He seems like a lovely fellow.
It wasn’t quite clear to me if PR s view was that all this only applied to people with ME with specific OI diagnosis in addition to ME, or whether the treatments or some of these (non pharmaceutical ones perhaps?) were considered to potentially apply to people with ME without extra diagnoses where they had OI symptoms. It may be that this was covered and I zoned out for that.
The host said some good stuff about the importance of not triggering PEM and the danger of exercising beyond capacity.
However she did say right at the end that people with ME weren’t getting sufficient oxygen to the brain.
I am right now seeing stars and experiencing dizziness every time I stand up. So it seems perfectly plausible to me that optimal oxygen delivery to my own brain may not be occurring. Or even that this may be to some extent a factor in this illness. However while it may be reasonable to suggest that this may be occurring, in one’s own view, it’s not a known fact.
This over reach may cause the audience to question the reliability of the narrator as a source. No small inaccuracy to present the unknown as the known.
This confusion undermines the message that she so eloquently articulated earlier in the video about known harms to people with ME subject to inappropriate interventions.
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Binkie4
Senior Member (Voting Rights)
Great video especially if you have OI as I do. I intend to buy Peter Rowe's book ' Orthostatic Intolerance'. He links OI to hypermobility which I also have. In fact it felt like a description of my ME: he also brings in MCAS.
My son and now my granddaughter have been diagnosed with ADHD in the last 3 years. He uses ritalin with some of his ME patients. I need to listen again to understand better.
He spoke of the danger of the fluoroquinolones for people with ME, of blood pooling and the shortage of blood to the brain.
Very muddled this morning after an almost sleepless night.
edit: Peter C. Rowe MD 2024 Living Well with Orthostatic Intolerance Johns Hopkins Press Health Book
edit2: Jennie Jacques asked whether there was any link with hormones. The reply was that women suffer more with OI than men particularly around their period. He noted that it had been observed that women who were transitioning ( into men), saw an improvement in their OI, although this couldn't be used generally as a treatment for obvious reasons.
edit3: he talked of the benefits of 2 litres of saline in resetting the autonomic nervous system after infections. He wanted formal studies on the uses of hyperbaric oxygen because anecdotes were all over the place.
Ritalin is good at vessel constriction in those people for whom this is a problem. Blood pooling is a problem for some, low blood volume for others, for which different drugs are required.
My son and now my granddaughter have been diagnosed with ADHD in the last 3 years. He uses ritalin with some of his ME patients. I need to listen again to understand better.
He spoke of the danger of the fluoroquinolones for people with ME, of blood pooling and the shortage of blood to the brain.
Very muddled this morning after an almost sleepless night.
edit: Peter C. Rowe MD 2024 Living Well with Orthostatic Intolerance Johns Hopkins Press Health Book
edit2: Jennie Jacques asked whether there was any link with hormones. The reply was that women suffer more with OI than men particularly around their period. He noted that it had been observed that women who were transitioning ( into men), saw an improvement in their OI, although this couldn't be used generally as a treatment for obvious reasons.
edit3: he talked of the benefits of 2 litres of saline in resetting the autonomic nervous system after infections. He wanted formal studies on the uses of hyperbaric oxygen because anecdotes were all over the place.
Ritalin is good at vessel constriction in those people for whom this is a problem. Blood pooling is a problem for some, low blood volume for others, for which different drugs are required.
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Ken Turnbull
Senior Member (Voting Rights)
I think the presenter might have been referring to Dr Rowe's work with his collaborators in the Netherlands on measuring low blood flow to the brain in OI. I know it can't be measured directly, but isn't low oxygen supply a given when blood supply is reduced? I have read that the brain can compensate, by "sucking out" more oxygen from the blood than usual, but this takes more effort and I'm not sure whether it can compensate completely for such a reduction or keep up the higher extraction level for a longer time.
I'm not an expert - just dad of a daughter who has low blood flow to the brain for another reason (also hard to measure!).
