Framework Observatory · Research in development
How do people encounter, combine and revise explanations of illness, and how do their relationships to those frameworks shape care decisions, agency and health outcomes over time?
An illness framework can offer an explanation, a way to act, a community or a source of hope. People engage with these mindsets in different ways and often hold several at once. We want to understand what each offers, how combinations work in people’s lives, and how those relationships connect to choices, experiences and outcomes over time.
The same explanation may have different consequences depending on how it is held, communicated and acted upon, and on a person’s illness and circumstances. We would study the full range of engagement: what makes an account attractive, what commitment sustains, what people try, and what changes through experience. Select a part of the pathway to see what we would examine.
Record the particular claim, which symptoms or illness phase it explains, and where it came from. Several accounts can remain influential at once.
What we would record
The proposition, its scope, source and place alongside other explanations.
Illustrative example. A person attributes illness onset to infection and standing symptoms to autonomic dysfunction.
Feedback in both directions
Improvement, deterioration, remission or relapse can change an explanation’s credibility and influence. Clinical care, relationships and material circumstances can affect every part of this sequence. We will investigate the timing and pathways; the diagram does not establish causation or predict an individual’s outcome.
We ask when a framework helps someone pursue useful care, make sense of experience, sustain a practice or live meaningfully with illness. We also ask when it narrows options, adds burden or makes change difficult. These possibilities can coexist, and their balance may change across symptoms, circumstances and stages of illness.
Our approach is pluralistic and empirical: take people’s experiences seriously, then use evidence to distinguish what helps, for whom, in what combination and with what tradeoffs. Practical usefulness and explanatory accuracy are separate questions; relief does not by itself confirm a mechanism story.
Agency includes both a person’s sense of influence and their actual ability to understand, choose, access, combine or leave forms of care. We would examine where felt control and available options align or diverge, including the effects of cost, disability, relationships and institutions. Persistent illness is not evidence of insufficient effort or the wrong mindset.
By scoped hope, we mean hope connected to a specific possibility—relief, greater function, recovery, connection or meaning—with its evidence, uncertainty and limits made clear. The aim is to help people recognize what a path may offer and what it asks of them, while leaving the choice with them.
Select a circle to unpack a family of explanations, or a numbered diamond to inspect an offering. Shared connections show why the same practice may sit inside different accounts of illness. This is a starting vocabulary for research, not a measured map of community beliefs or a guide to treatment.
Circles = explanatory families. Numbered diamonds = offerings. Lines = candidate relationships to investigate. Clusters are editorial groupings; distances carry no measured meaning. Equal circles do not imply equal evidence.
Read selection: Learned threat & retraining ↓Practitioner adoption requires a defined sample and dated coding of what each practitioner acknowledges, emphasizes, claims and offers. Commercial presence requires a defined catalogue of distinct products or services, with duplicate sellers separated from distinct offerings. Neither is an evidence score.
Evidence belongs to a specific claim, population, intervention, outcome and time horizon. We would attach reviewed evidence to those records rather than give an entire framework one score. Future networks can show observed co-endorsement, referral or use, with denominators and uncertainty.
The current circle-size option counts only linked offering categories in this curated map. It is sensitive to how we grouped the categories. It cannot estimate how many products, practitioners or patients exist.
Someone may attribute the beginning of illness to infection, understand standing symptoms through POTS and use a regulation practice to manage distress. These commitments can be strong at the same time.
We distinguish what people think is true from what they use in practice. Contradictions can remain unresolved; people may limit an explanation to one symptom or illness phase, or use a practice while remaining unsure of its mechanism.
Identity attachment, emotional investment, trusted sources and willingness to reconsider add further dimensions. Strong confidence can be well grounded; revising an account can help or impose costs. We do not assume that greater flexibility, firmer commitment or holding more frameworks leads to better outcomes.
Pacing, accommodation, recovery-seeking, acceptance, symptom relief and meaning-making are orientations toward living. They are not necessarily competing causal explanations.
Illustrative settings, not patient data. Move each slider independently: someone can doubt an explanation and still find a practice useful. Nothing is saved.
These values do not need to add to 100. They illustrate two dimensions of a relationship to an explanation. The study would also examine attachment, trust and willingness to reconsider, then follow actual choices and separately measured health and life outcomes. Moving a slider makes no prediction about those outcomes.
A practitioner can recognize several mechanisms while organizing a consultation around one, making stronger claims about it and offering particular services. Functional medicine supplies an explicit example of a multi-system organizing approach; how individual practitioners use it is an empirical question.
We therefore record acknowledgment, causal emphasis, treatment rationale and commercial offering separately. We also distinguish an advertised practice from what a person actually receives.
Explanations influence choices alongside money, access, disability, medical advice, relationships and available alternatives. Using a treatment does not reveal a person's beliefs by itself.
This sequence is a research prompt, not a proven causal chain. Improvement can change an explanation just as an explanation can change a decision. Material evidence and remission, recovery or relapse can prompt revision.
Our proposed 24-month study focuses on adults aged 18 and older with Long COVID or post-infectious ME/CFS, explicitly including people with POTS in those illness journeys. Coexisting conditions remain part of each person’s history. The broader observatory can later investigate other chronic-illness communities with appropriate clinical context.
Lived Evidence would lead machine-learning and natural-language analysis of up to two bounded historical corpora, targeting hundreds of thousands to millions of posts where verified access permits. Human-validated, multi-label coding would follow explanations, stance, sources, reported choices and health changes. A mention may express doubt, quotation or rejection; frequency alone is not adoption or outcome.
Approximately 36 adults would be invited to three interviews and nine brief monthly records over nine months. Baseline, midway and final interviews explore encounters, commitments and consequential choices. Monthly records track confidence, practical reliance, functioning, symptoms, agency, care changes and burden. Patient partners would pilot accessibility and completion time, with split, assisted or partial responses and the option to skip.
Approximately 12 clinician, organizer or provider interviews, plus dated public claims, would connect consequential explanations to tests, services, products and institutions. Three bounded comparison cases would connect community histories with patient journeys.
Functioning is the focal health outcome. Agency is measured separately, alongside symptom experience, meaning, belonging, spending, time and adverse experiences. Reported remission, recovery and relapse retain the person’s definition and duration. Clinical evidence would be considered where available and separately consented; symptom relief does not establish disease modification.
We would examine whether changes in practical reliance precede changes in functioning, considering prior health and causal confidence, and assess agency separately. Within-person timelines and limited longitudinal models would be interpreted alongside interviews. Care decisions may help explain a relationship; resources, concurrent care and health changes that happen first may offer other explanations.
Thirty-six participants can support detailed trajectories and exploratory estimates of associations. The study cannot reliably rank frameworks or establish that a commitment caused recovery. More posts or repeated records do not create more independent participants. Historical accounts supply context; they cannot provide clinical recovery rates.
This work builds on medical anthropology, illness-representation research, medical pluralism and longitudinal patient studies. Its proposed contribution connects simultaneous commitments, historical circulation and the supply of care with prospectively measured choices and health and life outcomes.
The outputs would combine framework maps, patient trajectories and exploratory association estimates: how different commitments and combinations connect to care, functioning, agency and life with illness. Patterns of benefit, burden, nonresponse and change would guide more focused studies. A methods review would assess whether a larger survey cohort is needed for adequate precision.
Over time, this evidence could inform an AI model or other decision-support tool that helps people explore frameworks and combinations, compare what others have experienced, and consider possible benefits, burdens and alternatives. People would retain the choice of what to engage with and how strongly. Learning from lived experience could make the range of possibilities more legible.
That is a future research direction. Lived Evidence’s initial machine-learning work would map historical community accounts. Any later guidance tool would require appropriate permission to reuse data, attention to whose experiences are missing, and independent testing of whether it improves understanding and choices. A large collection of stories alone cannot establish what caused an outcome or predict what will help a particular person.
The broader question is how people use explanations to act under uncertainty, and with what consequences. Applying the findings to other settings of human agency would require fresh research. The interactive map is an illustration for exploration; its sliders do not predict health outcomes.
Contribute a framework, source or research perspective →The catalogue combines candidate families from our research planning with clinical and provider examples. It is a preliminary, non-exhaustive vocabulary; it does not rank their prevalence or evidence. Traditional medical systems, cultural variation and accounts outside this initial English-language scope need further representation.
Clinical references supply context; provider pages document what is offered or claimed. These are different kinds of evidence. Named products are illustrative examples, not endorsements. The project convener has a professional relationship with Shiftwave; any product-specific evaluation requires disclosure and independent review.
Research foundation: the Common-Sense Model.
Clinical context and candidate biological processes; not a ranking of this map.
Clinical autonomic examples and individualized management.
A provider organization's account of integrating multiple systems; not evidence of all practitioners' behavior.
Example of a program's claims, not independent validation.
Boundary between specific medical chelation and unapproved detox marketing.
Definition and evidence/safety assessment.
An indication-specific example; not clearance for every device or claimed use.
Provider description of vibration, sound and breath guidance.
Source for marketed scalar-frequency claims; not clinical evidence.
Project description updated 8 October 2026; catalogue reviewed 5 October 2026. Relationships shown are candidates for investigation, not findings from the proposed study.
Related work: evaluating mind-body programs →