PURPOSE STATEMENT

Pediatric Care for Autonomic Research, Education, and Solutions (PCARES), a Utah Nonprofit Corporation, is a community of dedicated primary care physicians and healthcare providers committed to supporting each other in research, education, and the development of solutions for the delivery of autonomic medicine to pediatric and young adult patients suffering from autonomic disorders.

MISSION STATEMENT

• Promote and Fund Clinical Pediatric Research

We aim to advance the care of pediatric and young adult patients by supporting research in autonomic medicine that enhances the knowledge and tools available to primary care physicians who provide clinical care.

• Primary Care Provider Education and Community

We will focus on expanding the delivery of quality CME content available to clinicians by developing online streaming content, and producing clinical care-focused educational materials specifically for primary care providers. This will equip primary care providers with the resources they need when patients are referred back to them for autonomic disorders management by specialists.  Develop PCARES.org for the delivery of CME education and resources. An example of this is the “POTS and Beyond” CME Conference, hosted by the UofU, which targets a broad multidisciplinary audience to provide a 1.5 day long introductory course to the diagnosis and management of POTS and related symptoms.

• Practice Solutions

We are committed to ensuring the viability of primary care clinics, enabling them to effectively support their patients who suffer from autonomic disorders resulting in chronic complex illness.

SUMMARY INTRODUCTION

The U.S. healthcare system is broken.  Despite spending 18% of GDP on healthcare—the highest total cost of care in the world—the U.S. has some of the poorest health outcomes. This key statistic is driven by corporate greed, private equity, and current medical culture prioritizing procedures and special interest over primary care and prevention.  The US allocates less funding to primary care and key preventive interventions than any other country who outperforms the US. The current system is ill-equipped to effectively care for citizens with complex, multisystemic disorders, which constitute the largest growing underserved population.  Women, children, and minorities are especially vulnerable when presenting with chronic complex illness. Physicians on the front lines often lack the necessary knowledge and time to manage these patients effectively, leading to feelings of dismissal or invalidation among patients. Those with complex conditions, such as post viral illness (including COVID), Postural Tachycardia Syndrome (POTS), fibromyalgia, and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), to name only a few frequently require extensive, multidisciplinary management strategies.  The complexity of these illnesses is further exacerbated by systemic issues within the healthcare system, which can result in patient harm, increased disability, and preventable healthcare spending.   

One of the primary systemic concerns is the fee-for-service model, which incentivizes volume over value, potentially leading to unnecessary procedures and fragmented care. This model often overlooks the comprehensive care needed for chronic complex illnesses, where collaboration and continuity of care are crucial.  Administrative burdens related to providing care for these illnesses further strain the healthcare system, with physicians spending significant unremunerated time on non-clinical tasks, detracting from patient care and contributing to burnout. This environment can result in rushed consultations and a lack of thorough patient engagement, which are detrimental to managing chronic complex conditions effectively. 

Additionally, a lack of accountability for outcomes and the cost of hyper-specialization create barriers to holistic care, often leaving primary care providers without the resources or support necessary to manage these patients adequately. The prioritization of financial performance over patient outcomes by healthcare administrators exacerbates these issues, as does the cultural resistance to innovation and change within the medical community.   US Medical culture also plays a major role in patient harm, with issues such as medical errors, poor communication, and a lack of empathy impacting patient experiences and outcomes. “Gaslighting” is never appropriate and is exceptionally harmful, especially when public trust is placed in a physician’s opinion. Acknowledging what we don’t know is a key part of building that trust. The stigma and bias faced by certain patient populations, including those with chronic complex illnesses, further hinder effective treatment and care, further eroding trust.

To address these challenges, systematic change is needed, including a shift in the current medical culture. We advocate for policy objectives that favor a shift toward value-based care, reducing administrative burdens, empowering primary care, and reforming medical leadership to prioritize patient outcomes and physician viability in the primary care space .  Additionally, fostering transparency, teamwork, and empathy training within medical education and practice can improve the care of patients with chronic complex illnesses, ultimately enhancing quality of life and health outcomes.  

A key policy proposal for implementing effective leadership, research, and practice solutions to improve outcomes across all disciplines is to elevate the role of Autonomic Disorders Specialists. These specialists represent one of the only transdisciplinary teams of physicians and supporting providers from across all specialties who care for the most severe of the chronic complex patients.  Although housed under the subspecialty of Neurology by the United Council of Neurologic Subspecialties(UCNS), Autonomic Disorders Specialists include certified primary care physicians, internists, pediatricians, cardiologists, and neurologists, among many others.   See Autonomic Disorder definition for further description. 

IDENTIFIED SYSTEMIC ISSUES CAUSING PATIENT HARM

1. Financial Incentives: The Problem with Fee-for-Service Models

Volume Over Value: The healthcare system reimburses doctors and hospitals for the number of services performed rather than the outcomes achieved.

• Example: More tests and procedures generate revenue, even if they don’t improve patient health.

Fragmented Care: Physicians are often financially incentivized to work independently rather than in collaborative, team-based models, which can lead to disjointed care. 

Impact on Patients: Patients can experience unnecessary procedures, over-testing, or rushed consultations due to the focus on maximizing billable services. 

2. Administrative Burdens

Paperwork and Bureaucracy: Physicians spend an increasing amount of time on non-clinical tasks and un-billable work such as electronic health record (EHR) documentation, excessive prior authorization submission, billing codes, and compliance requirements.

• Some studies estimate that physicians spend two  hours on administrative tasks for every hour spent with patients.

Impact on Doctors: These tasks create frustration and reduce the time doctors can dedicate to patient care, contributing to burnout. Research from the American Medical Association found medical practices spend an average of 14.6 hours each week to complete the prior authorization requirements insurers impose—the equivalent of nearly two business days.    

Impact on Patients: Patients feel less seen and heard, as their doctors are often distracted or pressed for time. 

3. Lack of Accountability for Outcomes

Fragmented Metrics: Hospitals and providers are often evaluated on process-based metrics (e.g., how quickly patients are seen) rather than long-term health outcomes. 

Resistance to Change: There’s a reluctance to adopt innovations such as value-based care models or preventive care approaches because they disrupt entrenched systems and revenue streams.

Impact on Patients: Health outcomes suffer when the system prioritizes short-term efficiencies over long-term wellness.

4. The Cost of Specialization and Hierarchy

Hyper-Specialization: Over the decades, medicine has shifted toward specialized care, which has siloed expertise and made comprehensive care harder to achieve.

• Specialists are often financially rewarded more than primary care providers. 

Hierarchy: A deeply ingrained hierarchical culture means specialists often dominate care decisions, potentially sidelining primary care or collaborative approaches. 

Impact on Patients:  Can lead to a fragmented experience, where no single doctor oversees the “big picture” of a patient’s health.

5. Misaligned Leadership Priorities

Focus on Profitability: Healthcare administrators often prioritize financial performance over physician well-being or patient satisfaction.

Disconnect from the Front Line: Many leaders are far removed from the daily realities of patient care, creating policies that may hinder rather than help.

Impact on Doctors and Patients: This disconnect creates friction between administrators and healthcare providers, with patients caught in the middle.

IDENTIFIED MEDICAL CULTURE ISSUES CAUSING PATIENT HARM

1. Medical Errors and Poor Communication

Prevalence of Errors: Medical errors are a leading cause of preventable death in the U.S., often stemming from systemic issues and cultural attitudes.

Cultural Factors:

•  Fear of Mistakes: The culture of perfectionism in medicine makes admitting and learning from errors shameful.  

• Physicians feign perfection even though the entire enterprise is a joke.  As a result when a patient presents with unexplained symptoms, instead of a physician recognizing their own limitations, they conclude it must be psychosomatic and are referred to psychiatry.   85-90% of patients with Dysautonomia symptoms receive a psychological diagnosis first as a misdiagnosis. 

• Blame vs. Solutions: Physicians often face personal blame for errors, dijscouraging transparency and open discussions about systemic fixes.

Impact on Patients: Poor communication and unresolved errors can result in delayed diagnoses, improper treatments, and preventable complications.

2. Resistance to Innovation and Change

Cultural Conservatism: The medical profession has a history of resisting new practices, technologies, and evidence-based guidelines, clinging instead to traditional methods.

• Example: Delays in adopting handwashing protocols in the 19th century and more recent reluctance toward telemedicine or value-based care.

Impact on Patients: Slow adoption of proven innovations, such as minimally invasive procedures or new treatment standards, can lead to suboptimal care and unnecessary suffering.

3. Overwork and Physician Burnout

Physician Burnout: Overwhelmed and exhausted doctors are more likely to make errors and less likely to engage meaningfully with patients

Current payment models only allow 15 minutes per patient visit, in order to cover overhead and stay viable.  

Cultural Norms:

• The “hero mentality” celebrates doctors who overwork, discouraging self-care and work-life balance.

• Admitting fatigue or seeking support is stigmatized as weakness.

• Being vulnerable and admitting limitations to patients is rare.  

Impact on Patients: Patients may receive rushed, impersonal care, and their concerns might be overlooked due to doctors’ time, mental and emotional strain.

4. Erosion of Empathy

Desensitization: The culture of detachment encourages doctors to suppress emotions to remain “objective,” which can erode their empathy.

 Medical Training: During their training, doctors are often taught to focus on clinical facts at the expense of the patient’s emotional experience.  Therapeutic alliance is the most evidence-based practice for achieving the best outcomes; however, it is rarely practiced or taught. 

Impact on Patients: Patients can feel ignored, misunderstood, or dehumanized, which undermines trust and satisfaction with care.

5. Inadequate Patient-Centered Care

Focus on Processes Over People:

• Physicians are often taught to follow protocols without sufficiently considering individual patient needs or preferences.  

• Patients may feel like numbers rather than unique individuals with complex lives.

Impact on Patients: This lack of personalized care can result in treatment plans that fail to align with a patient’s values, goals, or circumstances.

6. Stigma and Bias in Care

Cultural Blind Spots:

• Certain patient populations—such as women, minorities, or those with complex conditions like chronic pain—may be dismissed or treated with skepticism.

• Implicit biases, reinforced by cultural norms, can result in unequal treatment and worse outcomes.

Impact on Patients: Patients may avoid seeking care, receive inappropriate treatments, or experience poorer health outcomes due to biased assumptions.

7. The Prioritization of Status Over Patient Care

Prestige in Medicine:

• Medicine often glorifies advanced procedures and technology over foundational aspects of care, like communication or prevention.  Primary Care is looked down upon in US physician culture and is under compensated. 

Impact on Patients: Patients might undergo unnecessary procedures, face higher risks, or receive care that’s misaligned with their actual needs

KEY POINTS SUMMARY

• The Underserved: Certain patient populations —such as women, minorities, or those with complex conditions like chronic pain, autoimmune, or autonomic disorders for example—may be dismissed or treated with skepticism due to lack of empathy and/or education on the part of the physician. Further physicians often are incapable of providing care due to systemic issues, resulting in growing the population of the underserved.  This is because . . . 

• Care of the Chronic Complex Patient: requires extra effort and time, but the US healthcare system is broken and disincentives physicians and providers to provide such care.  If they do provide such care, it is often at their own expense.  

• High Total Cost of Care:  The United States has the highest total cost of care in the world and yet some of the worst patient outcomes.  Patients with dysautonomia, for example, can see as many as 70 physicians without receiving the help they need, leading to expensive and often repetitive medical workups without answers [6]. This inefficiency not only burdens the healthcare system but also exacerbates the suffering of the patients. 

  • The U.S. spends nearly 18 percent of GDP on health care, yet Americans die younger and are less healthy than residents of other high-income countries. 

  • Only 5% of the US health care spending supports primary care.   Most countries that outperform the US spend 15 % or more on primary care and prevention.

  • Unnecessary testing and procedures accounts for nearly 30% of health care costs, and physicians have a responsibility when evaluating symptoms to use testing strategies that offer the highest value. Fortunately, a thorough history alone generates the highest diagnostic yield—up to 75% in some studies—with physical examination contributing an additional 10% to 15%. In contrast, testing results in less than 10% of diagnoses. 

• Prevalence of Errors: Medical errors are often cited as the leading cause of preventable death in the U.S., often stemming from systemic issues and cultural attitudes. 

• Loss of Physician Autonomy: Research demonstrates that physician-owned and operated clinics and hospitals consistently have lower total cost of care and better outcomes.   However, such practices are disappearing rapidly under current conditions.  Consolidation of medical practices under private equity employment increased the total cost of care while delivering worse patient outcomes.   

• Lack of Trained Medical Help for the Chronic Complex Patient: Prior to COVID-19, the Mayo Clinic estimated there were over 3 – 6 million patients in the US alone with dysautonomia, representing the fastest growing segment of complex chronic illness in the United States.  Many estimates suggest that this number has more than doubled since the pandemic.  However, there are only 62 physicians certified in the Neurology subspecialty “Autonomic Disorders,” accredited by the United Council of Neurologic Subspecialties (UCNS) [2].  Few are entering the field of Autonomic Disorders due to lack of reimbursement for time required to care for the medically complex patient.  Primary care lacks the education and support by specialists to provide the needed care.  

• Lack of Reliable Education for Primary Care Physicians: While patients can receive an accurate diagnosis from a specialist, they are often referred back to their primary care providers, who may lack the necessary knowledge and resources to manage these patients effectively. This lack of understanding often leads to patients feeling dismissed or invalidated in their disease. Over 25% of these patients may go on to become completely disabled without appropriate help [4, 5]

• Lack of Reliable Research to Direct Primary Clinical Care: One example, current recommendations for managing dysautonomia and those with complex chronic illness only help a minority of patients. There is a significant lack of funding for specific research in this area, which limits the development of more effective treatments [7, 8].

RECOMMENDED OBJECTIVES FOR POLICY CHANGES

Shifting to Value-Based Care: Aligning incentives with patient outcomes to encourage preventive care and reduce unnecessary interventions.  

 Reducing Administrative Burdens: Streamlining documentation and regulatory processes to let doctors focus on patient care.

Reducing system redundancy and identify unproven health care spending burdens 

Incentivize Physician Owned Practices and Institutions.  

 Empowering Primary Care: Investing in primary care providers and emphasizing holistic, team-based care models. Increase US spending to equal 15 % or more on Primary Care, similar to other countries who outperform the US. 

Reforming Medical Leadership: Ensuring leaders are connected to frontline challenges and prioritize both patient outcomes and physician well-being.  Place physicians certified in Autonomic Disorders in key positions.  Restore Autonomic Medicine at the NIH. 

Transparency: Encouraging open acknowledgment of mistakes to foster improvement.  Require transparency in research and disclose publicly conflicts of interest. 

 Teamwork: Breaking down hierarchies and encouraging collaborative care.  

 Empathy Training: Reintroducing human connection as a core part of medical education and practice.  Require Therapeutic Alliance Training.

Patient-Centered Metrics: Redefining success in medicine to prioritize patient satisfaction, safety, and outcomes over prestige or profitability.  

POTENTIAL SOLUTIONS

1. HHS to create  an Office of Chronic Complex Care

   1. Work with insurance providers and Medicare offices to increase payment for current  reimbursable diagnosis codes for complex care, or chronic care management.  Seeing one chronic complex care patient is equal to seeing 3-4 patients in the same amount of time in the clinic,  and often exceeds the time spent during an office visit as additional time is required to coordinate care. Current reimbursement for chronic care management codes by medicare does not cover actual cost to the practice. 

   2. Work with insurance providers and Medicare offices to create requirements for insurance to increase reimbursements to 2-3 times the standard reimbursement rates for underserved populations based on location or specialty.  For example, in Baltimore, insurance is required by state law to pay 3-4 times the standard billing rates for office visits by physicians at freestanding pediatric institutes that provide chronic complex care. The POTS Clinic, Down Syndrome Clinic, and Autism Clinic at Kennedy Krieger meet patient community demand and are thriving by having the resources and time available to care for patients with chronic complex disorders.  

      1. Immediate Policy action:  Require insurance companies to reimburse three times the billing amount (3x allowable reimbursement) for all physicians certified in Autonomic Disorders by the United Council of Neurologic Subspecialties (UCNS). With only 62 certified physicians, this change would represent a minimal budget increase while stimulating large interest and demand for training and care in the chronic complex patient under the autonomic disorders umbrella, through an already established practice track.

         1. The requirements for certification are rigorous but achievable. Any physician can become qualified by demonstrating three or more years of experience caring for medically complex patients with autonomic disorders, which must constitute at least 25% of their practice. Additionally, candidates must complete 60 hours of Continuing Medical Education (CME), obtain two letters of recommendation from professionals in the field, and pass the Autonomic Disorders certification exam.

         2. Currently, interest among trainees is low due to the complexity of patient care and insufficient insurance reimbursements that fail to cover the overhead costs required to provide such care—Metrodora being a case in point. However, a threefold increase in reimbursement would generate immediate interest through an existing certification pathway that requires demonstrated long-term commitment and education. Certification is open to many specialties beyond neurology.   

   3. Work in collaboration with the NIH and CDC to guide research focus areas for 2025-2029 that will impact patient care delivery for chronic complex disorders, identifying best practices through creation of evidence-based research. Identify wasteful use of valuable research spending and redirect funding towards areas of greatest need.  For example, there are no meaningful results from the $1 billion spent by the NIH RECOVER program. As of 2024, there is basically nothing to show for it. There has been no real actionable progress on major symptoms of COVID, including fatigue, dyspnea on exertion, and brain fog, and there are NO clinical trials. RECOVER lacks transparency, is shrouded in secrecy when questioned, and is guilty of armchair strategy.  

2. Lobby for Legislation in Utah : Complex Care Clinic reimbursement 

3. Collaborate with existing insurance plans, to create Medical Home Population Health Model of Reimbursement. 

   1. Support the creation of a model pediatric clinic, proof in concept for a sustainable practice both within private and academic institutions, for such reimbursements. 

   2. Funding of PCARES trained or employed nurses to work within clinics that have at least 25% clinic visits dedicated to autonomic disorders within the chronic complex illness population.  

4. Fundraise and grant money for pediatric research supporting primary care delivery model of care. 

   1. Fun

5. Establish Fundraising Campaign for an Endowment funded care  model of care similar to Shriners Hospital or St Jude’s Research Hospital.  Free from insurance and a patient’s ability to pay.  Aligns physician and patients goals. 

6. NIH Initiatives and Investigations

   1. Identify wasteful NIH spending and repurpose.  Specifically RECOVER should be cut and research money reallocated.  Research on Post COVID Dysautonomias – Most commonly referred to as Long COVID, post-COVID syndrome or post-acute sequelae of SARS-CoV-2 infection (PASC).  PASC comes in many forms and affects all body organs. This heterogeneous presentation suggests involvement of the autonomic nervous system (ANS), which has numerous roles in the maintenance of homeostasis and coordination of responses to various stressors. Thus far, studies of ANS dysregulation in people with PASC have been largely observational and descriptive, based on symptom inventories or objective, but largely indirect, measures of cardiovascular function, and have paid little attention to the adrenomedullary, hormonal and enteric nervous components of the ANS. Such investigations do not consider the syndromic nature of autonomic dysfunction.   https://www.nature.com/articles/s41582-023-00917-9

   2. Establish new NIH Institute of Autonomic Medicine (IAM) to lead the way and directly address the lack of meaningful research and progress on chronic complex disease..  An Initiative at the NIH on Multi-System, Multi-Disciplinary Disorders of Regulation Involving the Autonomic Nervous System (Dysautonomias)

1. Mission statement: The overall goals of the autonomic medicine institute at the NIH would be to establish autonomic medicine as a clinical and scientific discipline, promote patient-oriented research on autonomic disorders, and mentor rising investigators in the field. The program would help reduce the burden of chronic, multi-system, multi-disciplinary disorders of regulation involving the autonomic nervous system (ANS), via a cost-effective, coordinated, integrated effort that would exploit the particular strengths of the extramural and intramural NIH research formats.

2. What are dysautonomias? The term, “dysautonomia,” refers to conditions in which altered functions of one or more components of the ANS adversely affect health. The most common dysautonomias are those in which normal, adaptive changes in ANS functions worsen an independent pathologic state. Dysautonomias also can reflect abnormalities of the ANS itself, and virtually all dysautonomia research is on these abnormalities. There is an entire “universe” of dysautonomias, with “galaxies” in the pediatric, adult, and geriatric age groups. Within each age group are “constellations” of overlapping syndromes. 

3. Why are dysautonomias hard? Despite their prevalence and public health burden across the spectrum of ages, dysautonomias fall through the cracks of the traditional biomedical enterprise, for several reasons. First, they are multi-disciplinary. Second, they are complex. Third, they are mind-body disorders, involving numerous two-way streets between the brain and periphery. Fourth, different centers have different emphases and panels of autonomic function tests, and the autonomic rare diseases clinical research consortium dissolved several years ago. Sixth, autonomic medicine is not part of curricula in medical school or post-graduate training, resulting in an inadequate cadre of clinicians to manage patients suffering from these disorders. Seventh, the structure of current medical financial systems does not adequately cover the most important autonomic function test—the medical history—or facilitate telemedicine, which might be highly cost-effective in patient management. Finally, rather than taking the lead in autonomic medicine as a clinical and scientific discipline, the NIH has reneged and is shutting down its only autonomic medicine research section.

4. The ANS as an idea is old and inadequate: The multi-disciplinary, mind-body nature of chronic disorders of regulation (e.g., post-COVID syndrome, post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural tachycardia syndrome (POTS)) suggests involvement of the autonomic nervous system (ANS) because of the numerous roles the ANS plays in homeostasis and coordinated responses to essentially all stressors. The ANS concept was promulgated more than a century ago, before the discoveries of neuroendocrine systems, immune and inflammatory systems, and most importantly the central autonomic network (the existence of which invalidates the outdated notion that the ANS functions autonomously of the brain). The theory of the extended autonomic system theory is a necessary update. The 4 components of the EAS are linked by 6 bi-directional interactions that constitute negative feedback loops. This network of bi-directional interactions provides the foundation for homeostasis.        

5. The “grand challenge”: A key issue is that researchers investigating COVID-19 sequelae and other multi-disciplinary disorders of regulation involving the ANS do not know what to look for because they have inadequate training in autonomic medicine. This is the “grand challenge” of autonomic disorders. A program within the NIH on complex, chronic dysautonomias (e.g., post- COVID syndrome, ME/CFS, chronic orthostatic intolerance syndromes, autonomic synucleinopathies) would be valued national resource for research, teaching, training, and public relations.

6. Finances: The NIH RECOVER has been a boondoggle. Repeated vague references to “they” and “the committee” bespeak lack of transparency, closed door politicking, ignorance, and inertia. The lack of appreciation of autonomics in planning and priorities has been especially glaring. For a small fraction of the RECOVER budget an autonomic research program coordinated by a consortium of investigators who are certified in autonomic disorders would drastically improve the quality of care of patients with any of a variety of chronic multi-system, multi-disciplinary disorders of regulation involving the ANS.

DEFINITIONS CONTINUED (Alphabetical Order) 

Complex Regional Pain Syndrome (CRPS)- A chronic (lasting longer than 6 months) pain condition that most often affects one limb usually after an injury characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area

Ehlers Danlos Syndrome (EDS) – A group of inherited connective tissue disorders characterized by loose and fragile skin and joint hypermobility, often the most severe type of HSD.

Fibromyalgia – chronic disorder characterized by widespread musculoskeletal pain, fatigue, and tenderness in localized areas. It is often accompanied by other symptoms such as sleep disturbances, cognitive difficulties, headaches, irritable bowel syndrome, and mood disorders like anxiety or depression.

Hypermobility EDS – A type of Ehlers–Danlos syndrome characterized by generalized joint hypermobility, plus systemic manifestations of a generalized connective tissue disorder, positive family history, and/or musculoskeletal complications, plus exclusion of other types of Ehlers–Danlos syndrome. 

Hypermobility Spectrum Disorder (HSD) – A group of clinically relevant conditions related to joint hypermobility in which phenotypic domains are limited to the musculoskeletal system. EDS is one of the most severe types 

Long-COVID-19 –  A condition in which there are multiorgan symptoms and complications beyond the initial period of acute infection and illness with SARS-CoV-2.  Upto 30% will meet criteria for LC-POTS.  More then 50% meet criteria for ME/CFS.  

Mast Cell Activation Syndrome (MCAS) – A mast cell activation disorder in which there are episodic multisystem symptoms consistent with mast cell activation, appropriate response to medications targeting mast cell activation, and documented increase in validated markers of mast cell activation

ME/CFS – Myalgic encephalomyelitis-chronic fatigue syndrome is syndrome of unknown etiology characterized by an unexplained persistent or relapsing chronic fatigue that is of at least 6 months’ duration, is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction of previous levels of occupational, educational, social, or personal activities.  Characterized by loss of cerebral blood flow upon standing up.  

Spontaneous Intracranial Hypotension (SIH) – a condition characterized by low cerebrospinal fluid (CSF) pressure within the skull, occurring without an obvious cause such as a recent lumbar puncture or trauma. The primary symptom of SIH is a positional headache, which typically worsens when the patient is upright and improves when lying down. This headache is often described as severe and debilitating. SIH is believed to often be the result of a spontaneous leak of CSF.

Orthostatic Intolerance (OI) – Describes a group of circulatory disorders within the umbrella term of Dysautonomia, in which symptoms are brought on upon upright posture and are largely alleviated by lying down.  POTS, ME/CFS, and SIH all have orthostatic intolerance as a key feature.   OI can be used as a diagnosis if not meeting any other criteria. 

Postural Tachycardia Syndrome (POTS) – A type of chronic orthostatic intolerance lasting ≥ 3 months associated with excessive upright sinus tachycardia in the absence of orthostatic hypotension, plus a constellation of typically daily symptoms that may include lightheadedness, dizziness, nausea, dyspnea, diaphoresis, headache, fatigue, and other symptoms of autonomic dysfunction. Excessive tachycardia is defined by present consensus as a sustained heart rate increase of at least 30 bpm in adults (40 bpm for adolescents), or a heart rate > 120 bpm (in adults), within 10 min of upright tilt table testing. There are many causes including EDS, Autoimmune, Post Concussion, Small Fiber Neuropathy, and the most common type Post Viral.   If post COVID, then LC-POTS.   

Post Vaccination Syndrome  – refers to a range of symptoms or adverse effects that occur after receiving a vaccination. These symptoms can vary widely in severity and duration, and they may be part of the body’s normal immune response to the vaccine or, less commonly, an indication of an adverse reaction. .   

Post Viral Syndrome – Any chronic condition which is preceded by a viral infection, most commonly EBV, COVID, and unknown.  

Therapeutic Alliance – A key component in the practice of successful medical care and patient outcomes. It describes the collaborative and trusting relationship between a healthcare provider and a patient, characterized by mutual respect, agreement on treatment goals, and a shared understanding of the tasks involved in achieving those goals. Therapeutic alliance is a well-researched and evidence-based practice integral to achieving positive patient outcomes across various medical and psychological interventions. Despite its proven effectiveness, it remains underemphasized in some clinical settings, highlighting the need for greater focus on this crucial aspect of patient care.