Medscape on NIH Accelerating Research, April 4-5, 2019: New Findings Elucidate Potentially Treatable Aspects of ME/CFS

[Mary]

https://www.medscape.com/viewarticle/911666
New Findings Elucidate Potentially Treatable Aspects of ME/CFS

Much of the focus on the clinical side centered around two key facets of the illness: postexertional malaise (PEM) and orthostatic intolerance (OI). According to the 2015 Institute (now Academy) of Medicine (IOM), definition of ME/CFS, PEM — described as a "crash" or worsening of all symptoms after even minor exertion — is required to make the diagnosis, along with at least 6 months of profound and disabling fatigue, and unrefreshing sleep. A fourth criterion is either OI or cognitive dysfunction.

David M. Systrom, MD, a pulmonary and critical care medicine specialist and director of the Invasive Cardiopulmonary Laboratory at Brigham and Women’s Hospital (BWH), Boston, described results from invasive cardiopulmonary testing that show that patients with ME/CFS have distinct defects in both ventricular filling pressure and oxygen extraction from the muscles.

Neither of those are features of deconditioning, in which the major defect is decreased stroke volume and cardiac output. In ME/CFS patients, he found supranormal pulmonary blood flow compared with VO2 max, indicating left-to-right shunting.

In addition, Systrom found that a large proportion of ME/CFS patients with these cardiopulmonary defects also have biopsy-demonstrated small fiber polyneuropathy, suggesting that PEM may be due to an underlying autonomic nervous system dysfunction.

Also at the meeting, Peter C. Rowe, MD, director of the Children's Center Chronic Fatigue Clinic and professor of pediatrics at Johns Hopkins University School of Medicine, Baltimore, presented his colleagues' findings showing that, in patients with ME/CFS who have OI, cerebral blood flow drops significantly compared with controls on tilt-table testing even without changes in heart rate or blood pressure. And this was true regardless of VO2 max or recorded steps, suggesting again that the phenomenon isn't simply due to illness-related inactivity.

Two phenomena appear to be contributing to the OI simultaneously, Rowe said: increased pooling of blood in the legs and decreased vasoconstriction, along with a decrease in circulating blood volume.

But in a new and potentially paradigm-shifting finding, van Campen and colleagues used transcranial Doppler echography of the internal carotid and vertebral arteries during the tilt-table test in over 400 ME/CFS patients. They displayed a greater than 20% reduction in cerebral blood flow compared with a 6% reduction found previously in healthy volunteers

"It was quite a profound change," Rowe said, noting, "Maybe we've been looking in the wrong place. If symptoms are due to decreasing cerebral blood flow, maybe that's where we should focus."

The finding was seen even among the patients who did not demonstrate heart rate and blood pressure changes during the tilt test.

This seems to be a very good article. What I found most fascinating (not least because it may apply to me! ) is where it talks about a 20% decrease in cerebral blood flow during a TTT, even without changes in BP and HR. I've only done a poor man's TTT - and I passed it. My BP and HR both stayed fine, no apparent problems, though I crashed the next day. But I always feel uneasy if I have to stand for any length of time over a few minutes and maybe this is why - this is fascinating stuff!

 

[Belbyr]

I always knew POTS and CFS were the same thing or at least the same spectrum

 

[toyfoof]

What I found most fascinating (not least because it may apply to me! ) is where it talks about a 20% decrease in cerebral blood flow during a TTT, even without changes in BP and HR. I've only done a poor man's TTT - and I passed it. My BP and HR both stayed fine, no apparent problems, though I crashed the next day. But I always feel uneasy if I have to stand for any length of time over a few minutes and maybe this is why - this is fascinating stuff!

Me too! I just did the NASA lean test (https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf) yesterday and my HR and BP weren’t remarkable. But I took a picture of my feet before and after. Before, white and pasty. After, purple and mottled. I could feel the blood pooling down but it wasn’t reflected in my stats. This could explain it!

 

[Mary]

@toyfoof - how interesting - That could explain it! I didn't think to look at my feet afterwards. I may have to try it again when I'm feeling brave . . . I just looked quickly at the link you posted, and they say to limit fluid and sodium before the test, which I didn't do. I drink a fair amount of water and eat a lot of salt - I crave it. It's good to know the right way to do what you're trying to do! I guess I really should do it again. I think this 20% drop in cerebral blood flow may be new information, though I'm not sure.

I don't know if you've been reading about mestinon - Dr. Systrom is starting a new study about it and ME/CFS trying to deal with the above issues. This thread discusses this study, and a couple of members mention Huperzine A and Parasyn Plus as possible cholinesterase inhibitors also.

 

[Murph]

I always knew POTS and CFS were the same thing or at least the same spectrum

I agree that it's unhelpful to have POTS labelled as minor comorbidity rather than a major symptom. There is a big clue there, potentially, and it seems many people have overlooked it for a long time.

 

[toyfoof]

I don't know if you've been reading about mestinon - Dr. Systrom is starting a new study about it and ME/CFS trying to deal with the above issues. This thread discusses this study, and a couple of members mention Huperzine A and Parasyn Plus as possible cholinesterase inhibitors also.

Yes, it was this thread that prompted me to try the test, to see if this is even something that could help me. I thought the test results indicated it wouldn’t, but now I’m rethinking that. I’m going to look into all of this.

 

[Judee]

NASA lean test (https://batemanhornecenter.org/wp-content/uploads/2016/09/NASA-Lean-Test-Instructions.pdf)

Do you think those instructions would apply to the Tilt Table Test too?

 

[toyfoof]

@Judee I would think so, since it’s measuring the same thing. Probably best to check with the doctor administering the test.