Resource Should Everyone with Chronic Fatigue Syndrome Be Tested for Orthostatic Intolerance?

[Cort]

Cort submitted a new resource:

Should Everyone with Chronic Fatigue Syndrome Be Tested for Orthostatic Intolerance? - Dr. Peter Rowe would know...

In followup to his 2015 Solve ME/CFS Initiative Webinar Dr. Peter Rowe responded to this question

Q: Do you think that people with ME/CFS who have problems being upright should be tested for OI as standard procedure? If so, how can we make this happen? How can we educate clinicians about this?

Even in the most impaired individuals with ME/CFS, a minimal evaluation should include assessment of the frequency of orthostatic symptoms, as well as measurement of heart rate and...

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[susanna]

OI is a very prominent symptom for me. What if you can't even do the standard tests that medical science requires as proof of your disability? I couldn't even stand for a minute or more, or would get very distressed and exhausted. As for a tilt test, forget it. My heart takes too long to recover from any change of position. I've never had the heart rate and BP tested on standing. It would take too long! Surely this would be enough 'evidence'? this must a common problem in ME.

 

[Cort]

OI is a very prominent symptom for me. What if you can't even do the standard tests that medical science requires as proof of your disability? I couldn't even stand for a minute or more, or would get very distressed and exhausted. As for a tilt test, forget it. My heart takes too long to recover from any change of position. I've never had the heart rate and BP tested on standing. It would take too long! Surely this would be enough 'evidence'? this must a common problem in ME.

Maybe if you could find a dysautonomia specialist he/she could diagnose you quickly without doing a tilt table test. (Check out dysautonomia international for a list of specialists)....otherwise I would bring in a copy of the home test to a doctor, bite the bullet and just do it in the office. Can you get to a doctors office.

 

[Barliman]

The short answer is yes.
My background is a lifelong history of ADHD which worsened to more severe/generalised symptoms (chronic pain localised to the right upper quadrant of my back, plus fatigue symptoms) following a number of traumatic events.
I am a health practitioner and i see many ADHD individuals- and most have clinical signs of orthostatic intolerance.
A tilt table test may well be unnecessary- simple monitoring of facial colour, heart rate, and blood pressure when going from sitting, to lying down, to standing upright and still, initially for a couple of minuets, but then for 5-10 minutes, tells a great deal, without spending a fortune.

Look at this:

O really wish that this was known to me before my emotional reactivity tore my family apart and left me as isolated as I am now. The answer is right in front of my face- and it hurts like hell- because this could all have been averted IF the Medical Profession were not as intellectually lazy as they are.
Now I am working with 2 tools - transauricular vagal nerve stimulation ( I had to trace about 30 papers to work out how to do that) and facial immersion in ice water. Most of the reactivity is gone-- in a week, no less. All that is left is a genuine anger at the incompetence of the profession that has been taking my money while pretending to fix this problem.

 

[November Girl]

Dr. Lucinda Bateman recently stated that treating orthostatic intolerance may be the most important treatment for ME/CFS. The Bateman Horne center is one of the premier ME/CFS clinics.

 

[SarahTee]

Just wanted to bump this for the new year.

Dr Rowe addresses the question of folks who can’t complete the test in the linked resource:

“Even in the most impaired individuals with ME/CFS, a minimal evaluation should include assessment of the frequency of orthostatic symptoms, as well as measurement of heart rate and blood pressure supine and sitting. Some very impaired people with ME/CFS may not tolerate standing or tilt testing (Miwa K. Cardiac dysfunction and orthostatic intolerance in patients with myalgic encephalomyelitis and a small left ventricle. Heart Vessels 2014).”

If you get to a proper autonomic specialist, they will find a way. They deal with patients ranging from ambulatory to bedbound. Try the Dysautonomia International specialist list, or join a dysautonomia or POTS Facebook support group that covers your locality.

If you can’t manage to see a specialist, but suspect you do have orthostatic intolerance, you can (carefully) try out compression gear and oral rehydration salts, which have studies to support their use in OI and CFS. Cort has covered both of these interventions and they are also discussed on the forum. Just do a quick search.

I believe they are also covered in the Bateman Horne lecture.

 

[SarahTee]

Here is a Bateman Horne lecture on orthostatic intolerance in CFS:

The channel has a few lectures on this topic.

 

[SarahTee]

Not only that, it’s time to measure cerebral blood flow with Doppler ultrasound in OI testing:

https://www.deepdyve.com/lp/springer-journal/is-it-time-to-move-beyond-blood-pressure-and-heart-rate-during-head-up-A27wOQkjUg?key=springer

Instead of only looking at blood pressure and heart rate, which are not always diagnostic.