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Orthostatic Intolerance, POTS and CFS: Resources

Problems Standing1Articles and Videos

Dr. Peter Rowe broke the story on orthostatic intolerance (OI) and ME/CFS in the mid 1990s and runs a clinic at Johns Hopkins in the US for young people with CFS.  He is probably the foremost authority at treating orthostatic intolerance this disorder.

  • YouTube video of Peter Rowe’s 2010 CFIDS Association webinar on Managing Orthostatic Intolerance
  • Slides for Dr. Rowe’s 2010 CFIDS Association Webinar on Managing Orthostatic Intolerance
  • Dr. Rowe’s  information for patients document on orthostatic Intolerance (2010)

Dr. Pocinki writes about autonomic nervous system dysfunction, orthostatic intolerance and CFS in Dysfunction Junction: the ANS and CFS.

Phoenix Rising pages on orthostatic intolerance

Organizations and Websites

  • The National Dysautonomia Research Foundation (NDRF) provides many resources for people with orthostatic intolerance: information, forums, a handbooklists of medical specialists, and more.
  • The Dysautonomia Information Network (DINET)  has research overviews, treatment suggestions, an excellent newsletter, Q&As with doctors and much more. DINET is a great resource for people with orthostatic intolerance.
  • Many patients with Ehlers-Danlos Syndrome have autonomic problems, including orthostatic intolerance. The Ehlers-Danlos National Foundation has research, treatment information, a newsletter and message boards.
  • Established in 1978, the Vanderbilt Autonomic Dysfunction Center is reportedly one of the top testing facilities in the US.
  • OI Resource is an excellent guide to various aspects of OI with an emphasis on finding, wearing, and learning about G-suits. A G-suit is a garment with inflatable pouches, worn by fighter pilots to enable them to withstand high gravitational forces by applying external pressure to the body to prevent blood pooling. OI Resources is provided by a chronic fatigue syndrome patient with orthostatic intolerance.
  • The Dysautonomia Youth Network of America (DYNA) has an excellent site for young people with dysautonomia. It includes disease information, advice on how to deal with school, resources and stories.

Patient videos and blogs

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