Orthostatic Intolerance, POTS and CFS: Resources
Dr. Peter Rowe – broke the story on OI and ME/CFS in the mid 1990’s and runs a clinic at Johns Hopkins for young people with CFS. He is probably the foremost authority at treating orthostatic intolerance this disorder.
- YouTube Video of Peter Rowes 2010 CFIDS Association webinar on Managing Orthostatic Intolerance
- Slides for Rowes 2010 CFIDS Association Webinar on Managing Orthostatic Intolerance
- Rowe’s General Information on Orthostatic Intolerance (2010)
Dr. Pocinki - Dysfunction Junction: the ANS and CFS – Dr. Pocinki writes about autonomic nervous system dysfunction, orthostatic intolerance and CFS.
The ‘Perils of Standing’ Series on Phoenix Rising
Treating Orthostatic Intolerance
OI – The Research
Organizations and Websites
- National Dysautonomia Research Foundation (NDRF)- provides many resources for people with orthostatic intolerance, information, forums, a handbook, lists of medical specialists, and more.
- Dysautonomia Information Network (DINET) - Research overviews, treatment suggestion, an excellent newsletter, Q & A’s with doctors – DINET is a great resource for people with orthostatic intolerance.
- Ehlers-Danlos National Foundation - Research, treatment information, newsletter, message boards
- Vanderbilt Autonomic Dysfunction Center – established in 1978, is reportedly one of the top testing facilities in the nation.
- OI Resource – an excellent guide to various aspects of OI with an emphasis on finding, wearing, and learning about G-suits from a chronic fatigue syndrome patient with orthostatic intolerance.
- Dynakids - an excellent site for young people with dysautonomia. Contains disease information, advice on how to deal with school, resources, stories, etc.
Patient Video’s and Blogs
- POTS and OI Recovery - A patient blogs about getting treated for postural tachycardia syndrome (POTS). Lots of information and tips. Simply a great resource for POTS patients.
- Orthostatic Intolerance and ME/CFS Pt I - five video series explaining orthostatic intolerance from a patient
- Orthostatic Intolerance and CFS (2010) - Sue Jackson talks about her experiences with OI and gives resources.