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  ADI News

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National Library of Medicine/PubMed Updates Official Medical Subject Headings

 To Include Non-Familial Dysautonomia

Several years ago our medical research librarian entered into negotiations to persuade the National Library of Medicine, along with its medical journal article section PubMed, to make non-familial dysautonomia (NFD) an officially recognized search term supported by its catalog.  This was felt necessary to distinguish NFD from the completely different disease familial dysautonomia.  Our librarian wanted the National Library of Medicine to make it easier for health care providers to locate information about NFD without thousands of confusing incorrect search results.
A recent check of the National Library of Medicine/PubMed catalog reflects that the library has now in fact added non-familial dysautonomia as an official research/medical subject heading.   This will make finding accurate information, about NFD, easier.  Our thanks to our librarian for his efforts.

                      American Dysautonomia Institute (ADI) Makes Its First Gastroparesis Research Grant

Gastroparesis (stomach function paralysis) can result from non-familial dysautonomia.  To try to provide more effective treatment the ADI made a 2024 research grant, to Dr. Thomass Abell, of the University of Louisville.  We much appreciate his efforts in trying to reduce symptoms from this terrible condition.

                              ADI  Makes  Annual Research Grants to the University of Toledo Medical Center

The ADI made its first annual grant (in 2015) to the wonderful Dr. Blair Grubb of the University of Toledo Medical Center.  We made and will make further yearly additional funding grants (including in 2025).

Our grants have two intended purposes. The first is to fund research to help improve care options for people with dysautonomia. The second is to try to reduce the plague of delayed correct diagnosis, for people with the disease, by increasing health care provider awareness of its various forms.

                    Rep. Hailey Stevens Helps But Fails in Efforts as to Five-Million-Dollar Research Funding Bill

                                                  While Both Michigan Senators Neglected to Take Action

House of Representatives member Hailey Stevens requested that the House Appropriations Committee introduce a fiscal year 2024 five-million-dollar research funding bill for non-familial dysautonomia (NFD). Her staff did not coordinate a similar Senate bill with Debbie Stabenow and Gary Peters, our two Michigan Senators.  Both Senators have not adequately responded to our four letters, phone calls, and over ten e-mails asking that they introduce a five-million-dollar research funding bill.   In any case, Rep. Stevens' office reported that, in November 2023, the House Appropriations Committee not only refused to introduce a funding bill for NFD but also cut the budget, of the National Institutes of Health, by three billion dollars.  In the meantime, we are sorely disappointed with the inaction of our Michigan Senators, while appreciating the assistance of Rep. Stevens' staff.  We hope that our new Senator, Elissa Slotkin, will be more supportive.

                                               Non-Familial Dysautonomia (NFD) and the Covid 19 Virus

There is clear evidence that Covid 19 can cause NFD.   The concept is being compared to the mechanism that notes that mononucleosis can be a trigger for NFD.

                                   Dr. Chip and Karen Mills Charitable Fund Support Our Research Efforts

The Mills Charitable fund has made a donation to us.  The grant was used to fund research with our partners at the Mayo Clinic and University of Toledo Medical Center.  Our heartfelt thanks go out to the Mills.  

                                                                Becker Trust Makes Research Grant     

 Dr. David Becker, of the Newton and Rochelle Becker Charitable Trust, has provided a grant to us, in support of our research efforts. The late Newton Becker had previously provided assistance as to disease awareness and funding efforts in Congress.

                                            Berman Foundation Supports Our Grants to the Mayo Clinic

Our heartfelt thanks, to the Mandell "Bill" & Madeline Berman Foundation, for its matching support for one of our research grants to the Mayo Clinic.  The late Mr. Berman has also helped us to advocate, by legislation, for increased federal medical research funding.

                                           ADI Makes Twenty-Second Research Grant to Mayo Clinic                       

 In 2025 we made our twenty-second annual research grant to the dysautonomia treatment section of the Mayo Clinic.  In addition to first recognizing dysautonomia, in adults in 1993, Mayo physicians actively provide care to people with the disease, teach other physicians about the condition, and are at the forefront of efforts to find more effective treatment.

Leaders of this ongoing research include Mayo Clinic's Dr. Philip Fischer, Dr. Wolfgang Singer, and Dr. Kelsey Klaas.  These physicians, and their associates, are speaking at medical conferences and publishing medical journal articles regarding dysautonomia.  All of these efforts are significant steps on the long road to more widespread prompt diagnosis of dysautonomia and improved medical care options.  

We appreciate the credit, given to our funding, in Mayo Clinic research journal articles, a book, and on audio-visual displays at continuing education presentations.  Moreover, the doctors have provided supportive information, directly to our member of the House of Representatives, as to our battle to get a specific funding bill introduced for NFD research.

                                                  Research Grants to the Medical College of Wisconsin

 We made seven research grants to the Medical College of Wisconsin. 

                                                 Funding for the National Institutes of Health (NIH)

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We have made a single grant to the NIH.  When it assures us that further grants will be spent on non-familial dysautonomia research we stand ready to consider making further funding efforts for it.

                                                                 FDA Approves Additional Drug

The Food and Drug Administration has approved Droxidopa to treat neurogenic orthostatic hypotension.  Many doctors and nonprofits provided input and support to obtain this approval.

                   CDC Makes Preliminary Commitment to Ramp Up Dysautonomia Disease Awareness Efforts

We are gratified to report that, in response to our requests and recommendations, we were contacted by a researcher at the Centers for Disease Control and Prevention (CDC).  The CDC agreed to the importance of updating web-based information, and its continuing medical education program, to provide diagnostic and treatment information about dysautonomia.  

Moreover, we are hopeful that the fact that many people diagnosed with chronic fatigue syndrome actually have a form of dysautonomia, will be further relayed to health care providers by the CDC.

The CDC has indicated that it will work with the adult and children's dysautonomia research/treatment sections at the Mayo Clinic. It also stated that it will offer a continuing education course, noting that many people diagnosed with chronic fatigue syndrome (CFS) actually have a form of dysautonomia.  This is much appreciated and a positive step towards correct diagnosis.

At the same time, we have recommended a specific health alert, stating that at least 25% of people diagnosed with CFS actually have dysautonomia.  In this regard, in 2012, a CDC representative stated that one to four million Americans have CFS.   

On a related note, we hope that other federal agencies will become more aggressive as to using no cost electronic notifications, to health care providers, as to the number of people who have dysautonomia, but have been misdiagnosed as having other physical conditions.

A continuing issue, as to increasing more prompt correct diagnosis, is the fact that non-familial dysautonomia (NFD) is not covered in medical school or or on doctors' board certification exams, while it is covered in vet. school.  

                                                            Progress At the National Institutes of Health

After many years of interplay, with the National Institutes of Health (NIH), we received three significant, and much appreciated, letters from it.  One, from the director of one of its divisions, the National Institute of Neurological Disorders and Strokes, reflects, for the first time from a high-level NIH official, that millions of Americans have forms of dysautonomia.  This comment is a major step towards increasing disease awareness and justifying a more equitable research budget.

Moreover, although the research expenditure accounting, at the National Institutes of Health (NIH), could be somewhat more transparent (in terms of disclosing specific research spending for dysautonomia) a prior acting director of the NIH advised that some of the research protocols, for which we have been advocating, have received funding.

Accordingly, we thank the previous acting director of the NIH for his kindness, patience, and follow through as to our inquiries and advocacy.

Additionally, the National Library of Medicine has gradually been updating medical subject headings following some of our recommendations.  It has agreed, according to its deputy director, to adopt more of our database update suggestions to make information, about the types of dysautonomia, more easily accessible.  It is also crucial to distinguish non-familial dysautonomia from familial dysautonomia.  Accordingly, we express our gratitude to the National Library of Medicine, including its deputy director.  We also note, as reflected above, that non-familial dysautonomia has been finally designated as an official medical subject heading.

Furthermore, extrapolating from the past testimony of NIH researchers, plus physicians who spoke at the 2002 Joint Congressional Dysautonomia Information Hearing, over 1.5 billion dollars (in 2002 dollars) is wasted each year in misdiagnosing and mistreating forms of non-familial dysautonomia.  In this regard, correspondence from the National Institutes of Health gives us increased hope, that over the next few years, this wasted amount of money will be reduced and more prompt correct diagnosis will increase.

Accordingly, our heartfelt thanks for the material that we received from the then acting director of the National Institutes of Health (Raynard Kington, M.D. PhD) the then director of the National Institutes of Neurological Disorders and Stroke (Dr. Story Landis), and, again, the deputy director of the National Library of Medicine. 

             Mayo Clinic Researchers Confirm That Many People Diagnosed with Chronic Fatigue Syndrome                                                                                                                Have a Form of Dysautonomia

In the February 2010 journal, Pediatric Neurology, Mayo Clinic researchers noted that: 

.......Postural orthostatic tachycardia syndrome is increasingly recognized as a significant factor associated with chronic fatigue, particularly in adolescents.  As many of 25-50% of adult patients with chronic fatigue syndrome demonstrate evidence of autonomic dysfunction, including postural orthostatic tachycardia syndrome [15].  Patients with chronic fatigue syndrome were also noted to manifest abnormal thermoregulatory responses of the skin, both at rest and with skin cooling [16]. (p. 79)
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The recognition of postural orthostatic tachycardia syndrome derived from a subset of adult patients who carried a diagnosis of orthostatic intolerance, but who also exhibited an abnormal heart-rate response to a positional change. Postural orthostatic tachycardia syndrome was first reported in adolescents in 1999 by Stewart et al. [4], and affects millions of Americans, particularly young women [5] [emphasis added]. (p. 75) *Johnson J, Mack, J, Kuntz N, et.al. postural orthostatic tachycardia syndrome: a clinical review.  Pediatric Neurology 2010;42(2):77-85.42(2):77-85.                 

To summarize, large numbers of people diagnosed with chronic fatigue syndrome have a form of non-familial dysautonomia.  Accurate diagnosis is necessary for the correct treatment to be rendered.

      Wal-Mart Supports Increasing Health Care Provider Awareness of the Many Types of Dysautonomia

Secondary to a generous grant from Wal-Mart, we were able to edit, publish, and distribute a limited edition edited book, intended for physicians, to help with the diagnosis and treatment of the multiple types of dysautonomia.

Wal-Mart's assistance will help reduce misdiagnosis and hasten the administration of the limited care options available for people with dysautonomia.  Thank you Wal-Mart!

           United States Financial Issues and Covid 19 Research Endanger Medical Funding for Non-Familial                                                                                                                                    

Hundreds of billions of dollars, pledged by the federal government to stem the 2008 federal economic disaster, made unclear the situation as to long term funding restoration needed due to prior federal research cuts to the National Institutes of Health (NIH).   However, as part of a past stimulus package, then President Obama increased the research budget at the National Institutes of Health.  This supplemental appropriation, to the NIH, was a step in the right direction.  Nevertheless, President Trump, in his first term in office, was not aggressive as to supporting research funding.  We hope that this situation will improve during his second term.

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                      More on the National Library of Medicine Updating Research Databases at Our Request

Using some of the grant funds that we received from the Serling Philanthropic Foundation, we have made repeated and specific proposals, to the National Library of Medicine, to make searching for information, about non-familial dysautonomia, easier.  We recommended that major forms of dysautonomia be cross-referenced and distinguished from familial dysautonomia.  In this regard, substantial progress has been made, but we would like more clear cross references, when making searches using the term non-familial dysautonomia, to the various subtypes.

In this regard, we know from contacts with physicians, and efforts by our research librarian, that finding authoritative material about the types and symptoms of non-familial dysautonomia can still be difficult.  However, we appreciate the partial remedial actions taken by the National Library of Medicine (NLM).

It is crucially important that the NLM (a division of the National Institutes of Health) continues to lead the way in making information more accessible as to how to diagnose dysautonomia, including its various sub-types.   Often searches for material about non-familial dysautonomia can still produce irrelevant articles/records about familial dysautonomia which is a different disease.  However, the situation has substantially improved.

                        ADI Receives Generous Donation from the Serling Philanthropic Foundation

Our heartfelt thanks, to the Michael and Elaine Serling Philanthropic Foundation, for its  grant to us.  We also gratefully appreciate Ms. Dana Serling's nominating us for consideration.

We have used the funds, among other projects, to work with the National Library of Medicine to add types of dysautonomia as a formal research subject heading, with cross-references to the various forms of the disease. 

Secondary to the help of the Serling Philanthropic Foundation, the MedlinePlus database (part of the National Library of Medicine) has been and will be further updated as to the different forms of dysautonomia.

                                   We Helped to Fund Mayo Clinic Book About Non-Familial Dysautonomia

In 2021, in part using research grant funding from us, Dr. Philip Fisher, Professor of Pediatrics at the Mayo Clinic, authored Tired Teens, Understanding and Conquering Chronic Fatigue Syndrome​ and Pots.   In this regard it is important to know that many people diagnosed, with chronic fatigue syndrome, in fact have non-familial dysautonomia.

                                     Well Over Three Million Americans Have Non-Familial Dysautonomia 

In 2002 the number of Americans, with dysautonomia, was estimated at one percent of the population.  That figure is probably low since it is now known that Covid 19 has triggered a large number of new cases of non-familial dysautonomia. 

Moreover, many people diagnosed with migraine headaches, irritable bowel syndrome, or "chronic fatigue syndrome" in fact have the autonomic nervous system disorder dysautonomia.  In terms of fatigue, it can be related to abnormal blood pressure/vascular control/heart rate issues as to changes in position.  These are the orthostatic intolerance or postural orthostatic tachycardia syndrome (POTS) types of dysautonomia.  However, blood pressure readings can be normal, taken in either arm, while blood pressure to the brain and other internal organs is insufficient due to the dysautonomia caused inability of blood vessels to properly expand and contract with changes in position.  Similarly, heart rates may sometimes be normal, even though a person in fact has POTS.

Accordingly, it is very important to take repeated blood pressure readings (in different body positions) and have a tilt table test performed and interpreted by a physician familiar with dysautonomia.  In this regard, the leading cause of blood pressure control problems, after essential hypertension, is dysautonomia caused orthostatic hypotension.  Orthostatic hypotension can manifest itself in a variety of symptoms, including fatigue, headaches, pooling of blood in the legs, and gray outs.

                                              Wall Street Journal Provides Inaccurate Disease Information

The Wall Street Journal has published articles about chronic fatigue syndrome.  Two articles do not mention that it is undisputed that many people diagnosed with chronic fatigue syndrome actually have dysautonomia.  Moreover, dysautonomia has multiple potential viral triggers.  On the other hand, in 2020, the Journal  correctly reported that Covid 19 can trigger the development of dysautonomia. 

        Congress Supports Increased Autism Funding and Should Do the Same for Non-Familial Dysautonomia

The ADI applauds those members of Congress who have voted for large increases in funding for autism awareness and research.  This much needed legislation is a refreshing contrast, to the statements of some Representatives and Senators, that they will not tell the National Institutes of Health on what conditions to spend money.

As to this situation, when the number of people with a specific disease grows at a plague-like pace, special Congressional attention is certainly justified.  Dysautonomia is tragically growing faster, we believe, than autism.  However, dysautonomia research funding was cut several times prior to 2009.  We pessimistically look forward to the 2025 and 2026 sessions of Congress further addressing this federal medical research crisis.  On the other hand, we are grateful for the National Institutes of Health's increased awareness of the need to assist people with forms of dysautonomia.  

In the interim, we compliment those members of Congress who voted for increased autism funding and supported an autism postage stamp.  The postage stamp is an excellent way to increase disease awareness.            


                                                    American Dysautonomia Institute---Reaching for a Cure