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On this page:

Research Centers for Orthostatic Intolerance (OI) and Autonomic Disorders
Postural Orthostatic Tachycardia Syndrome (POTS)
Chronic Fatigue Syndrome (CFS) / Orthostatic Intolerance (OI)
Vertical Heterophoria
Personal Links

Note: "(on site)" means this information is available on this website through the link provided.
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Links and More Information

Research Centers for Orthostatic Intolerance (OI) and Autonomic Disorders

Dr. Peter Rowe has researched and treated Orthostatic Intolerance (OI) for 30 years at Johns Hopkins. As his retirement gift to all of us, he has written a book with his experience and advice - Living Well with Orthostatic Intolerance: A Guide to Diagnosis and Treatment. I appreciate his practical ideas for adjustments that I can make in my daily life to better support my health and more options to discuss with my doctors. Thank you for sharing your knowledge and compassion, Dr. Rowe!
Note: Most of his patients that wear waist-high stockings with 20-30 mm Hg compression have found that amount of pressure to be a good balance between practical and helpful. Abdominal compression is important, too.
https://www.healthrising.org/blog/2024/10/05/peter-rowe_living-well-orthostatic_intolerance/

Vanderbilt Autonomic Dysfunction Center

Mission - Autonomic disorders cause loss of regulation of the heart, blood vessels, stomach, bowel and bladder. Affected patients may have palpitations or lose consciousness, and some have a rapidly fatal course. We hope to join with patient support groups to harness the knowledge and energies of physicians and investigators in the major centers where these patients are cared for, so that they can discover ways to treat and to cure these diseases. The greater the collaboration between doctors and patients, the more we can learn about these disorders. This important first step is necessary if we are ever to find genuinely effective and curative treatments.
www.vumc.org/adc

Center For Hypotension - Julian M. Stewart MD, PhD, Director

Our purpose at the Center for Pediatric Hypotension is to investigate, evaluate, and treat adolescents and young adults with orthostatic intolerance including those with orthostatic tachycardia, syncope and other forms of chronic orthostatic intolerance including the chronic fatigue syndrome.
www.nymc.edu/center-for-pediatric-hypotensive-disease

ClinicalTrials.gov -
clinicaltrials.gov/search?cond=Postural%20Orthostatic%20Tachycardia%20Syndrome

Mayo Clinic - Clinical Trials
www.mayo.edu/research/clinical-trials/diseases-conditions/postural-orthostatic-tachycardia-syndrome

Autonomic Disorders Rare Disease Consortium - see Prior Partners

This is a group of experts who are collaborating to better understand and treat these diseases. Information about various autonomic disorders and opportunities to participate in new research studies are available at this website. It also includes a registry to join and be notified about future research studies.
www.rarediseasesnetwork.org/research-groups
ADC Prior Research - https://www.rarediseasesnetwork.org/prior-research
About ADC - https://www.rarediseasesnetwork.org/news/autonomic-disorders-consortium

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Postural Orthostatic Tachycardia Syndrome (POTS)

Management of Postural Orthostatic Tachycardia Syndrome in the Absence of Randomized Controlled Trials by Asim Kichloo, MD, Michael Aljadah, MD, Blair Grubb, MD, and Khalil Kanjwal, MD

This article gives a good list of treatment options for Postural Orthostatic Tachycardia Syndrome (POTS) to work through with a knowledgeable doctor.
www.ncbi.nlm.nih.gov/pmc/articles/PMC8313187

The Postural Tachycardia Syndrome (POTS): pathophysiology, diagnosis & management by Dr. Satish R. Raj

This article gives a good overview of the different types of Postural Orthostatic Tachycardia Syndrome (POTS) and potential treatments for each type. It's really important to work closely with a knowledgeable doctor on this.
www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099

Viral illness may spur 'standing up' disorder Dr. Raj is a co-author of this research study.

Wow; what an interesting development in POTS medical research!
https://news.vumc.org/2014/03/13/viral-illness-may-spur-standing-up-disorder

POTS Research Highlights at Vanderbilt Autonomic Dysfunction Center
www.vumc.org/autonomic-dysfunction-center/research-highlights

Dysautonomia Information Network

Our Mission: To raise awareness of autonomic nervous system dysfunction and to promote dysautonomia education, support and networking.

Be sure to look through the Physician List by country and state.
www.dinet.org

Taking a Negative and Making a Positive (on site)
I was invited to write an essay for the Dysautonomia Information Network newsletter in Summer 2008.
This is in PDF/Adobe Acrobat format. (575 KB)

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Chronic Fatigue Syndrome (CFS) / Orthostatic Intolerance (OI)

ME/CFS Guidelines: Management Guidelines for General Practitioners (on site)
A guideline for the diagnosis and management of ME/CFS in the community or primary care setting
Myalgic Encephalopathy (ME)/Chronic Fatigue Syndrome (CFS)
This is in PDF/Adobe Acrobat format. (110 KB)

A taskforce of South Australian clinicians and others with experience in ME/CFS have developed this more succinct set of guidelines for GPs and other medical practitioners. Its focus is on the basic diagnosis and management of this condition in the community or primary care setting.
Developed in South Australia June 2004
Posted with permission from the author.

No Other Illness Like This One: Dr. Bell Finds Dramatic Abnormalities In CFIDS - Part 1 and Part 2 (on site) by Joan S. Livingston

This article is about low blood volume and Orthostatic Intolerance (OI) in Chronic Fatigue Syndrome (CFS) and was originally posted at chronicfatigue.about.com in July 2000.

Solve ME/CFS initiative (formerly The CFIDS Association of America)

Leading the Fight to Cure ME/CFS
Founded in 1987 and incorporated in North Carolina in 1990 as The Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, the Solve ME/CFS Initiative (Solve M.E.) relocated to Los Angeles, CA and officially changed our name in 2014. Solve M.E. is a non-profit disease organization that works to accelerate the discovery of safe and effective treatments, strives for an aggressive expansion of funding for research that will lead to a cure and seeks to engage the entire ME/CFS community in research, advocacy, and patient support. Solve M.E. is the foundational ME/CFS organization, steadily broadening strategic, collaborative relationships with patients, researchers, government officials and other ME organizations across the globe.
https://solvecfs.org/

Working to conquer chronic fatigue and immune dysfunction syndrome.
The CFIDS Association of America provides users access to a generous collection of resources, including: information on the diagnosis and treatment of chronic fatigue and immune dysfunction syndrome (CFIDS); resources for patients, caregivers, medical professionals, the media and young people with CFIDS; and information about Association-led programs aimed at empowering the patient and eradicating the illness.
www.cfids.org

CFIDS Fact Sheet (on site)
www.cfids.org/about-cfids/fact-sheet.asp
CFIDS Symptoms (on site)
www.cfids.org/about-cfids/symptoms.asp
Orthostatic Intolerance and CFIDS Fact Sheet (on site)
www.cfids.org/about-cfids/oi-and-cfs.asp
Diagnosis: Orthostatic Intolerance (OI) (on site)
www.cfids.org/about-cfids/orthostatic-intolerance.asp
Curriculum expands awareness - CFS: Primary Care Basics (on site)
www.cfids.org/archives/2002rr/2002-rr1-article01.asp

Dr. David S. Bell's website offers more recent issues of the Lyndonville News newsletter and the entire book Faces of CFS.
www.davidsbell.com
[Note: As of 2013, this website is not available.]

Also, see these pages (on site) Orthostatic Intolerance Test for more explanation on the simple testing procedure, Orthostatic Intolerance Test Results for more details about the 5 types of Orthostatic Intolerance, and Faces of CFS for another example of the OI test and using compression pants.

More resources, articles, and books about Chronic Fatigue Syndrome (CFS) by David S. Bell, MD, FAAP

CFIDS Disability Scale (on site)
The Difference between Activity Limitation and Fatigue (on site)
This includes an evaluation section called Daily Activity Ratio.
Florinef - clinical experiences (on site)
CFIDS, The Disease of a Thousand Names (1991)
The Doctor's Guide To Chronic Fatigue Syndrome: Understanding, Treating, And Living With Cfids (1994) - ad
A Parents' Guide to CFIDS: How to Be an Advocate for Your Child with Chronic Fatigue Immune Dysfunction (1999)
Faces of CFS - Case Histories of Chronic Fatigue Syndrome (2000)
Cellular Hypoxia and Neuro-Immune Fatigue (2007) - ad

The Pediatric Network for Chronic Fatigue Syndrome, Fibromyalgia, and Orthostatic Intolerance

In the Articles section, this site includes archives of some articles of The Lyndonville News newsletter, many of which were written by David S. Bell, MD, FAAP.
www.pediatricnetwork.org
[Note: As of May 2011, this website is not available.]

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Vertical Heterophoria

I included my experience with this on the Update page. I thought you might also be interested in additional information about Vertical Heterophoria to share with your doctors, too.

Vertical Heterophoria: New Discoveries Enable Treatment of Many Associated Disorders (on site)
by Dr. Debby Feinberg and Dr. Mark Rosner
Refractive Eyecare in February 2012
This is in PDF/Adobe Acrobat format. (846 KB)

This article has a thorough description of the testing and symptoms of Vertical Heterophoria.

Posted with permission from the authors and permission pending from the publisher.
Also available at this webpage - www.refractiveeyecare.com/2012/02/special-feature-vertical-heterophoria-new-discoveries-enable-treatment-of-many-associated-disorders

Vision Specialists of Michigan - www.vision-specialists.com
Dr. Debby Feinberg specializes in the treatment of Vertical Heterophoria.

From the homepage - "The doctors at Vision Specialists of Michigan have made pioneering discoveries into the diagnosis and treatment of Vertical Heterophoria and Superior Oblique Palsy, two uncommonly recognized and poorly understood eye misalignment conditions. Those who suffer from Vertical Heterophoria or Superior Oblique Palsy tend to have a small amount of vertical eye misalignment, which the brain corrects by directing the eye muscles to properly reposition the eyes. However, using the eye muscles in this manner overworks them and they become strained and fatigued, causing the many symptoms of Vertical Heterophoria and Superior Oblique Palsy. The severity and number of symptoms vary from person to person - some people are much more affected than others. Traumatic Brain Injury (TBI) has been known to cause these symptoms.

Most patients experience a marked reduction in their symptoms with precise prismatic correction. The doctors at Vision Specialists of Michigan have developed a very detailed and specialized NeuroVisual Evaluation, which allows for the accurate diagnosis and treatment of Vertical Heterophoria and Superior Oblique Palsy. Using realigning prismatic spectacle lenses, the strain and fatigue within the visual system is reduced or eliminated. Patients notice significant improvement in their symptoms during their first office visit. Improvement continues over the course of several visits as the prismatic prescription is fine-tuned and customized for the individual.

A specialized Questionnaire has been developed by the researchers at Vision Specialists of Michigan to identify those who might be suffering from Vertical Heterophoria or Superior Oblique Palsy."

Vertical Heterophoria Questionnaire - www.vision-specialists.com/patients/bvd-questionnaire/

Dr. Debby Feinberg and her husband, Dr. Mark Rosner, have written a book - If The Walls of My Exam Room Could Talk - ad - about patients' experiences with Vertical Heterophoria.

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Personal Links

These are ministries that have helped me or I have gotten to support in some way.

Would you like to know my God? He has helped me through all of this. Pray this prayer. - https://www.kcm.org/real-help/salvation/pray/prayer-salvation-and-baptism-holy-spirit

Kenneth Copeland Ministries - www.kcm.org

Joyce Meyer Ministries - www.joycemeyer.org

K-LOVE - www.klove.com - Positive Encouraging Christian radio and online music

Mercy Multiplied

Mercy Multiplied is a nonprofit Christian organization that equips people to live free and stay free through Jesus Christ.
Our residential counseling program helps young women ages 13-32 break free from life controlling issues and situations, including anxiety, depression, sexual abuse, eating disorders, self-harm, addictions, unplanned pregnancy, and sex trafficking. The residential program is voluntary, biblically-based, and completely free of charge. Our goal is to help residents permanently stop destructive cycles, discover purpose for their lives, and experience God's unconditional love, forgiveness, and life-transforming power.
Our Outreach services train and resource Christian leaders and helpers to effectively minister to those who are hurting and struggling. We offer a wide range of life-transforming workshops, discipleship resources, videos, podcasts, and other practical tools. Our goal is to share the life transforming principles used in our residential program to empower men and women of all ages to live in freedom.
https://mercymultiplied.com

Project Linus

Project Linus is a 100% volunteer non-profit organization with a two-fold mission:
First, it is our mission to provide love, a sense of security, warmth and comfort to children who are seriously ill, traumatized, or otherwise in need through the gifts of new, handmade blankets and afghans, lovingly created by volunteer "blanketeers."
Second, it is our mission to provide a rewarding and fun service opportunity for interested individuals and groups in local communities, for the benefit of children.
With chapters in all 50 states, Project Linus continues to grow. Blankets are collected locally and distributed to children in hospitals, shelters, social service agencies, or anywhere that a child might be in need of a big hug.
www.projectlinus.org

For US military veterans - VA Disability Claims Process for Presumptive Illnesses

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