Cerebral Blood Flow Is Reduced in Severe ME/CFS Patients During Mild Orthostatic Stress Testing. van Campen et al. 2020

He is a researcher:
https://twitter.com/user/status/1272283299889610752

 

Aaah very interesting. Thanks for posting this! So it does seem it’s vasoconstriction... caused by, something related to the sympathetic nervous system? I feel quite excited by this research, and the questions people are asking about this...more than I’ve felt in a while, as this is related directly to the whole not being able to sit up thing!

 

Interesting. For me it still feels like some membrane is torn and the horizontal helps the pressure to the head. The rheumatologist sent me to a cardiologist that confirmed the 'pots-like' symptoms with heart rate, but said definitely not the heart. Increase my salt intake is what he said. Not as a cure, but to help. Lol. As if. He said he prescribes salt pills, I declined. And reclined as soon as I could. Pressure on the back of the neck also helps. Wish they'd hurry up with the research already.

 

I'm not discounting orthostatic intolerance or the sympathetic nervous system's role in the illness.

In reference to the paper where there are no differences between mild / severe illness, but the same would apply to the eponymous post.

Mild CFS patients and sedentary people have the same effective activity levels, at about 5k steps. The cerebrovascular flow benefit is not linear but exponential, in other words, best at 10,000+ steps per day, or very active people.

In other words, by aggregating sedentary and active healthy individuals, you're excluding the most critical variable (sedentary healthy people) to increase your power. Because then the headline could hypothetically be "Severe CFS patients have same bloodflow as healthy people".

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"They were investigated in the morning, at least 3 h after a light breakfast or in the afternoon 3 h after a light lunch."

They know there's diurnal variation in this flow. So the next sentence should be so we properly segregated these groups since our sample size is so small for increased accuracy and packaged them into discrete variables, but they didn't. They didn't do it in their 400 person study either.

This is the type of stuff if the psychosomatic lobby did the Tweeters would throw a shitfit and we would have 100 page threads about how dumb they are.

 

I realize this is not a good study but hope better studies will follow. They might have found something important.

The comparisons to psychosomatic research can wait until we are in a situation where dozens of poor quality studies are affecting people with false information.

 

OI is common in multiple sclerosis, so a control group of MS patients in any ME OI trial could be interesting.

 

I don't disagree with the observation.

It is possible however that there are reasons that make a difference as to why.

At least from the outside it looks like psychosomatic research has no trouble getting funding to do whatever research they want. And with regard to ME they continue to churn out useless junk in spite of adequate funding.

This is not at all true for non-psych research which generally is more expensive to do and getting money is almost as rare as a winning lottery ticket.

And I don't think the big response is all about the low quality either. It's about the work starting with a completely false premise that protects the careers of researchers of this genre over the well-being of ill people who desperately want to be well and have done their (BPS) treatment to the detriment of their health.

 

I don’t really understand your first point of critique? Could you elaborate? How can severe patients have the same blood flow as healthy individuals?

Second point is interesting, I didn’t know that there was diurnal variation in bloodflow? Does is really matter as the patients are compared to themselves? So both measurements of lying down and tilted up are taken at the same time and they calculate the difference between them. How would diurnal variation change the outcome?