More notes from the @s4me_info
twitter thread.
This post is copied from tweets made during the July 27 session at 11:30 AM,
Dysautonomia, presented by Lauren Stiles.
At the end there's a brief comment on another session held at the same time,
Patient/ Caregiver Perspectives on Research - Participation and Priorities, presented by Rochelle Joslyn.
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Lauren Stiles, the president and co-founder of Dysautonomia International, is now presenting a workshop on various forms of dysautonomia.
Stiles argues that dysautonomia is part of many diseases and that before the corona pandemic at least 13% of the US population was estimated to have some form of dysautonomia.
A few ME/CFS researchers have used a simplified “lean test” but Stiles says that this approach has not been validated against a more formal tilt table test that forms the basis of POTS diagnostic criteria.
The simpler ‘lean test’ has sometimes been called the ‘NASA lean test’, but Stiles explains that NASA abandoned this test 30 years ago because it wasn’t reproducible.
Validation studies are needed to compare it against tilt table testing.
Stiles also discussed the overlap between postural orthostatic tachycardia syndrome (POTS) and ME/CFS.
Her slides stated that 48%-77% of POTS patients have ME/CFS while 19%-70% of ME/CFS patients are believed to have POTS.
But Stiles added that most patients with POTS without ME/CFS still suffer from severe fatigue.
Similarly, many patients with ME/CFS but without POTS might have other forms of dysautonomia.
In her view, there is an important overlap between dysautonomia and severe fatigue that is not fully captured by current diagnostic criteria.
Stiles also discussed three exercise studies on POTS patients.
In her view, these showed that the patients who could do the exercises, are helped by it.
But there were also major issues with some of these studies...
Stiles told that she was enrolled as a participant in one of these studies but that the authors weren't interested in her data because the treatment did not work well. So big question marks on this study.
Stiles also explained that there is a collaboration with experts from different diseases to come up with a POTS rehab protocol that takes account of co-morbidities such as ME/CFS.
The goal is a protocol that is flexible enough to serve patients with a wide range of disabilities.
Meanwhile in the other hall, there was a workshop on patient and caregiver perspectives on ME/CFS research. It was presented by members of the Community Advisory Committee for the NIH Collaborative Research Centers: Rochelle Joslyn, Jaime Seltzer, and Susan Taylor-Brown.
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