After the Plot Twist

Chronic illness changed my story. Now what?

Archives for May 2018

Autonomic Testing, Part One – The Outside Referral Obstacle Course

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After a string of events that started with reading about postural orthostatic tachycardia syndrome (POTS) online, since many people with chronic fatigue syndrome (CFS) also have it, and ended with a neurology referral and a tilt-table test with a cardiac electrophysiologist within my network, I ended up with an outside referral to an autonomic disorders specialist. Before our consult appointment (which I have not had yet), the doctor wanted me to do some autonomic tests in their testing lab. That 2-hour testing session included:

  • Cardiovascular testing with head-up tilt (essentially another tilt-table test), the Valsalva maneuver, and deep breathing
  • Quantitative sudomotor axon reflex test (QSART)

BUT before I get to all that in Part Two, let’s talk about the major pain of seeing a new doctor outside your healthcare system when you’re used to an HMO… [Read more…] about Autonomic Testing, Part One – The Outside Referral Obstacle Course

A Letter for Health Care Providers on Graded Exercise Therapy (GET) for ME/CFS

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For those who don’t know, May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) awareness month, at least in California. To kick it off this year, the Workwell Foundation posted the following to Twitter this afternoon (to view on Twitter, click here):

In honor of ME/CFS Awareness month the Workwell Foundation Research team has composed a letter about graded exercise therapy. Please feel free to print & distribute it widely.

The Workwell Foundation in California does research on ME/CFS with a focus on functional aspects of the disease and also offers cardiopulmonary exercise testing (CPET). Some people with ME/CFS recommend this testing as it allows them to both measure their impairment for disability applications and also aids the patient in appropriately pacing and avoiding symptom exacerbation. I won’t be discussing this for now because I have not done it (it is expensive and can induce a large crash, and frankly I just haven’t gotten around to it yet), but I very well may do it at some point, and I will write about it if/when I do!

If the above link doesn’t work, the letter can be found on their website under “Research & Latest News” or directly at this link here. It is addressed to health care providers and discusses the dangers of graded exercise therapy (GET) for patients with ME/CFS. It even has a page of references!

I don’t know about you, but I’m definitely considering sending this to all the doctors who have told me I just need to exercise more…