"Passive standing tests for the office diagnosis of postural tachycardia syndrome: New methodological considerations" (Peter Rowe team 2018)

Open access at https://www.tandfonline.com/doi/full/10.1080/21641846.2018.1512836

 

So my GP tried to do this test in her office. Sitting in my wheelchair waiting for my appointment sends my pulse up and makes me faint so when she got me to stand I only managed to do it for a few seconds. She felt she did not know enough about it anyway so referred me to cardiology.

Give them their due, I was seen quite quickly. He said "Well testing shows you don't have POTS" What test, I've never been tested. Your GP did one and it was negative. Useless was not the word for him. I was told to drink energy drinks and ushered out. I'm diabetic and can't take artificial sweeteners.

 

I think the word 'POTS' can be unhelpful when dealing with some doctors. Orthostatic intolerance is usually more accurate a term for us, because we may not actually have POTS but something similar.

I can't believe the specialist wouldn't even give you a test, though! It's ridiculous.

 

A woman at the dog park told me about the "One third rule".

When you see a doctor there is a one third chance you will:

- get proper care
- get no care
- get harmful care

As I've said elsewhere, medical error is the 3rd leading cause of death in the US (data for other countries are hard to find, but ain't gonna be much different).

Doctors are dangerous.

 

In the CCC Overview, page 1 it says: " Objective postural cardiac output abnormalities correlate with symptom severity and reactive exhaustion." https://www.mefmaction.com/images/stories/Overviews/ME-Overview.pdf

The CCC Overview cites item 37 in the References section: "Abnormal impedance cardiography predicts symptom severity in Chronic Fatigue Syndrome": https://www.ncbi.nlm.nih.gov/pubmed/12920435

A rarely discussed test is the impedance cardiograph test, which Dr. Arnold Peckerman wrote about in this 2003 article;

http://www.viruscausesfatigue.com/images/ReducedCardiacOutputandCFS.pdf

"Results: The patients with severe CFS had significantly lower stroke volume and cardiac output than the controls and less ill patients. Postexertional fatigue and flu-like symptoms of infection differentiated the patients with severe CFS from those with less severe CFS (88.5% concordance) and were predictive (R2 = 0.46, P<0.0002) of lower cardiac output. In contrast, neuropsychiatric symptoms showed no specific association with cardiac output. Conclusions: These results provide a preliminary indication of reduced circulation in patients with severe CFS. Further research is needed to confirm this finding and to define its clinical implications and pathogenetic mechanisms."

From a quick look at Dr. Peckerman's studies, it seems he found other cardiovascular issues for pwME, but funding from NIAID/NIH was cut off. Cort Johnson has an excellent article on Dr. Peckerman's and others' research in this area: https://www.healthrising.org/blog/2016/06/27/chronic-fatigue-syndrome-small-heart-disease/

I understand from a professional who employs the impedance cardiograph test, it is used extensively. The protocol used by this researcher involves supine measures for 10 minutes, and standing measures for about 10 minutes, or longer if tolerated. Abnormalities found may include reduced stroke volume and a compensating increase in heart rate with orthostatic challenge.

This test is apparently more or less available, and yet as with all things ME, clinicians are not taking up this test, and what it can show for their pwME.

It is wonderful we have the Nasa Lean test; a simplified version of the tilt table, and perhaps the impedance cardiograph test. Hopefully the simplicity of the Nasa Lean test will appeal to physicians, and its popularity will increase.

Dr. Ramsay was right on the money when he said there are circulatory problems for pwME. Unbelievably unfortunate to say the least, that signs of this problem have been dismissed for decades!

 

The local medical lab I go to has a sign that says they no longer take blood pressure readings, and suggests people do these at home. (Another expense!)

What this lab, and doubtless others have found is that blood pressure is higher in these medical settings. This is called "the white coat syndrome".

This may not be a useful suggestion, but would it help, @Mithriel if you took your heart rate and blood pressure at home, and charted them?

For those who are ambulatory, using a Holter Monitor ( test provided by doctors), and charting when you are upright, and and when you are supine may show a correlation between heart rate, and orthostatic challenge.