The Perils of Standing: Resources for Chronic Fatigue Syndrome (ME/CFS) Patients with Orthostatic Intolerance

Dr. Peter Rowe – broke the story on OI and ME/CFS in the mid 1990’s. He provides the most complete overview of drugs for CFS patients with OI and excellent overviews of other subjects. It was last updated about five years ago.

 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.

 Orthostatic Intolerance  


CFS and Orthostatic intolerance Drugs


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Ehlers-Danlos National Foundation - Research, treatment information, newsletter, message boards

The Perils of Standing   - A comprehensive four-part overview of Orthostatic Intolerance research in Chronic Fatigue Syndrome (ME/CFS)

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.

Compression Hosiery - online resources of compression hosiery include:

Others

  • Blood Pressure Monitor - can help those with neurally mediated hypotension (low blood pressure upon standing) monitor their blood pressure, Dr. Rowe recommends suggests the kind of cuff that goes around the upper arm not the wrist or finger.