{"ok":true,"corrections":{"ok":true,"summary":[{"priceId":"cms-img-echo","confirmedRight":0,"flaggedWrong":1,"publicMedianBelievedUsd":209,"note":"publicMedianBelievedUsd is a demand signal about the published figure. It is never used to price a ledger."},{"priceId":"cms-lab-cbc","confirmedRight":0,"flaggedWrong":1,"publicMedianBelievedUsd":null,"note":"publicMedianBelievedUsd is a demand signal about the published figure. It is never used to price a ledger."},{"priceId":"cms-ed-99284-complete","confirmedRight":0,"flaggedWrong":1,"publicMedianBelievedUsd":null,"note":"publicMedianBelievedUsd is a demand signal about the published figure. It is never used to price a ledger."},{"priceId":"cms-img-mri-brain-nc","confirmedRight":1,"flaggedWrong":0,"publicMedianBelievedUsd":null,"note":"publicMedianBelievedUsd is a demand signal about the published figure. It is never used to price a ledger."},{"priceId":"cms-test-holter","confirmedRight":1,"flaggedWrong":0,"publicMedianBelievedUsd":null,"note":"publicMedianBelievedUsd is a demand signal about the published figure. It is never used to price a ledger."},{"priceId":"cms-test-tilt-table","confirmedRight":1,"flaggedWrong":0,"publicMedianBelievedUsd":null,"note":"publicMedianBelievedUsd is a demand signal about the published figure. It is never used to price a ledger."}],"sends":6,"browserFigurePairs":6,"senders":6,"figures":6,"firstAt":"2026-10-01T08:49:12.622Z","lastAt":"2026-10-21T21:12:21.867Z","teamTests":4,"fold":{"hit":true,"rows":10,"foldedAt":"2026-10-21T00:00:00"},"deprecated":{"senders":"browserFigurePairs"}},"gap":{"ok":true,"respondents":0,"note":"No gap reports yet. This endpoint reports only what people have actually sent.","teamTests":0,"fold":{"hit":true,"rows":0,"foldedAt":"2026-10-01T00:00:00"},"reports":0,"senders":0,"submissions":0,"senderBasis":"none","denominator":"Distinct senders, counted outside the row: one network on one day, counted once. A room on one shared connection counts as one sender, so this number runs low, never high. \"submissions\" is how many were sent.","deprecated":{"respondents":"reports"}},"survey":{"ok":true,"n":108,"firstAt":"2026-09-09T00:00:00","lastAt":"2026-10-14T00:00:00","channels":{"advocate":4,"paid-panel":103,"direct":1},"headline":{"n":106,"of":"answers about the person's own illness","method":"The ranking, the three questions, the clinician count and the ranking by sex are computed from answers about the person's own illness. Answers a parent or caregiver gave about a child are read only as their own group, by stratum, and that group is withheld until it holds 11 answers."},"ranking":[{"burden":"forgone","rankedFirstBy":43,"rankedLastBy":12,"meanRank":2.33},{"burden":"oop","rankedFirstBy":36,"rankedLastBy":10,"meanRank":2.41},{"burden":"time","rankedFirstBy":23,"rankedLastBy":3,"meanRank":2.45},{"burden":"work","rankedFirstBy":4,"rankedLastBy":28,"meanRank":3.56},{"burden":"unpaid","rankedFirstBy":0,"rankedLastBy":53,"meanRank":4.25}],"rankingBySex":{"min":11,"stated":105,"notStated":1,"groups":[{"sex":"Female","n":66,"ranking":[{"burden":"forgone","rankedFirstBy":26,"rankedLastBy":6,"meanRank":2.29},{"burden":"time","rankedFirstBy":14,"rankedLastBy":1,"meanRank":2.41},{"burden":"oop","rankedFirstBy":22,"rankedLastBy":7,"meanRank":2.44},{"burden":"work","rankedFirstBy":4,"rankedLastBy":19,"meanRank":3.61},{"burden":"unpaid","rankedFirstBy":0,"rankedLastBy":33,"meanRank":4.26}]},{"sex":"Male","n":37,"ranking":[{"burden":"oop","rankedFirstBy":13,"rankedLastBy":3,"meanRank":2.35},{"burden":"forgone","rankedFirstBy":15,"rankedLastBy":6,"meanRank":2.43},{"burden":"time","rankedFirstBy":9,"rankedLastBy":2,"meanRank":2.49},{"burden":"work","rankedFirstBy":0,"rankedLastBy":8,"meanRank":3.46},{"burden":"unpaid","rankedFirstBy":0,"rankedLastBy":18,"meanRank":4.27}]}],"withheldGroups":1,"withheldResponses":2,"why":"The Federal Sprint Lead for the Invisible Illness track asked every team, on 26 August 2026, to be intentional about sex differences where relevant.","method":"Each group is the same count of the same answers as the total above it, computed by the same function. A sex group holding fewer than 11 responses is withheld here rather than served and hidden later, because a cross-tabulation narrows the group twice. Nothing is weighted, imputed or extrapolated."},"rankingByStratum":{"min":11,"counts":{"pediatric-onset":27,"adult-onset":67,"onset-not-stated":12},"groups":[{"stratum":"pediatric-onset","label":"Began before 18, answered by the person","n":27,"ranking":[{"burden":"forgone","rankedFirstBy":14,"rankedLastBy":1,"meanRank":2},{"burden":"time","rankedFirstBy":6,"rankedLastBy":0,"meanRank":2.41},{"burden":"oop","rankedFirstBy":6,"rankedLastBy":5,"meanRank":2.78},{"burden":"work","rankedFirstBy":1,"rankedLastBy":6,"meanRank":3.63},{"burden":"unpaid","rankedFirstBy":0,"rankedLastBy":15,"meanRank":4.19}]},{"stratum":"adult-onset","label":"Began at 18 or older","n":67,"ranking":[{"burden":"oop","rankedFirstBy":26,"rankedLastBy":4,"meanRank":2.27},{"burden":"time","rankedFirstBy":17,"rankedLastBy":3,"meanRank":2.34},{"burden":"forgone","rankedFirstBy":21,"rankedLastBy":11,"meanRank":2.61},{"burden":"work","rankedFirstBy":3,"rankedLastBy":16,"meanRank":3.48},{"burden":"unpaid","rankedFirstBy":0,"rankedLastBy":33,"meanRank":4.3}]},{"stratum":"onset-not-stated","label":"Age at onset not stated","n":12,"ranking":[{"burden":"forgone","rankedFirstBy":8,"rankedLastBy":0,"meanRank":1.5},{"burden":"oop","rankedFirstBy":4,"rankedLastBy":1,"meanRank":2.33},{"burden":"time","rankedFirstBy":0,"rankedLastBy":0,"meanRank":3.17},{"burden":"work","rankedFirstBy":0,"rankedLastBy":6,"meanRank":3.83},{"burden":"unpaid","rankedFirstBy":0,"rankedLastBy":5,"meanRank":4.17}]}],"withheldGroups":1,"withheldResponses":2,"method":"Each stratum is the same count of the same answers as the total, computed by the same function. A stratum holding fewer than 11 responses is withheld here rather than served, its count as well as its ranking. Rows collected before the instrument asked (version 2026-10-01.1) are \"age at onset not stated\", never assumed adult."},"unasked":{"forgone":32,"unpaid":15,"all-asked":19,"work":18,"time":13,"oop":9},"lead":{"forgone":34,"work":8,"oop":39,"time":23,"unpaid":2},"decide":{"patients":48,"reader":35,"clinicians":15,"researchers":8},"clinicians":{"n":105,"median":3,"mean":5,"max":47},"coverage":{"age":{"not stated":71,"45–64":17,"fewer than 11, not shown":20},"sex":{"Male":37,"Female":68,"not stated":1,"fewer than 11, not shown":2},"insurance":{"not stated":71,"Employer plan":15,"fewer than 11, not shown":22},"region":{"not stated":71,"South":18,"fewer than 11, not shown":19},"state":{"not stated":71,"fewer than 11, not shown":37},"stage":{"not stated":71,"Diagnosed":28,"fewer than 11, not shown":9},"respondent":{"not stated":5,"Me, about my own illness":101,"fewer than 11, not shown":2},"onset_age":{"not stated":12,"18–29":27,"45–64":15,"30–44":24,"13–17":16,"5–12":11,"fewer than 11, not shown":3},"diagnosis_age":{"not stated":10,"18–29":35,"30–44":27,"45–64":20,"fewer than 11, not shown":16}},"coverageWithheld":{"age":{"cells":3,"responses":20,"min":11},"sex":{"cells":1,"responses":2,"min":11},"insurance":{"cells":4,"responses":22,"min":11},"region":{"cells":3,"responses":19,"min":11},"state":{"cells":23,"responses":37,"min":11},"stage":{"cells":2,"responses":9,"min":11},"respondent":{"cells":1,"responses":2,"min":11},"onset_age":{"cells":2,"responses":3,"min":11},"diagnosis_age":{"cells":4,"responses":16,"min":11}},"smallCellMin":11,"sentencesHeld":20,"method":"Every figure is a count of responses exactly as entered. No weighting scheme of ours, no imputation, no extrapolation to a population. This is a self-selected sample, recruited through the channels listed, and must be read as one. Any answer to a question about the person (age, sex, coverage, region, state, stage, who is answering, the ages at onset and diagnosis) held by fewer than 11 responses is not shown: it is counted in the line \"fewer than 11, not shown\" and never named. Dates are published as the day, never the time.","firstOn":"2026-09-09","lastOn":"2026-10-14","teamTests":5,"fold":{"hit":true,"rows":113,"foldedAt":"2026-10-14T00:00:00"},"answers":108,"senders":108,"submissions":108,"senderBasis":"sends","denominator":"Some rows were our own team testing the form. They are left out of this count, and teamTests says how many. The sender index counts networks and cannot leave ours out, so while any row is marked this number counts what was sent, not senders.","deprecated":{"n":"answers"}},"interviews":{"ok":true,"n":15,"firstAt":"2026-09-14T20:35:54.281Z","lastAt":"2026-10-21T21:11:44.436Z","consent":{"quote-anonymously":10,"notes":5},"note":"Written interviews are held privately and are never served by any endpoint. Findings are published on the register as \"a user said X, so we changed Y\", with quotes only where the writer chose to be quoted.","teamTests":0,"fold":{"hit":true,"rows":15,"foldedAt":"2026-10-21T00:00:00"},"senders":13,"senderBasis":"senders","denominator":"Distinct senders, counted outside the row: one network on one day, counted once. A room on one shared connection counts as one sender, so this number runs low, never high. \"submissions\" is how many were sent."},"changes":[{"id":"db7451ae-81cc-431e-a5fa-9ce1d8f80354","date":"2026-10-13","said":"They waited a year and a half for a diagnosis. Some of what they saw, mostly the top of the ledger, read as if it was written by AI; they read the figures as Medicare's published prices, not bills.","changed":"The top of the ledger is rewritten in plain words. The page now opens with \"Medicare's published prices for the care you listed. This is not your bill.\" The total is labeled \"Medicare's price for the care you listed\", the note under it reads \"Every visit and test priced at Medicare's 2026 rate, even if it happened years ago\", and a line with no figure is counted as \"No published price\" on both the ledger and the printable sheet.","who":"A participant living with a traumatic brain injury, in a written interview on 13 October 2026"},{"id":"729d3543-d81b-4a2f-84d8-db7d06392a30","date":"2026-10-13","said":"\"I entered my doctor visits and medication I was prescribed for 5 years, but there was no data shown for the medications.\"","changed":"Naming a kind of medicine, such as an antidepressant, antibiotics or steroids, now adds a prescriptions line to the ledger. Before, words like these were read as no care and added nothing. The line carries the one published federal figure for prescriptions: what a person pays out of pocket in a year, a 2018 national median from AHRQ's Medical Expenditure Panel Survey. It sits beside the total, never inside it.","who":"A participant describing postpartum depression, in a written interview on 13 October 2026"},{"id":"338d2830-f4a1-4972-8a82-4276b0d974e2","date":"2026-10-11","said":"It took over five years to get a diagnosis, and it came through a research study that used an invasive exercise test (iCPET), which they described as very costly and risky. Advice to keep up physical activity left them much sicker, and they have never returned to how they were before. A neurologist also recommended graded exercise and talk therapy. They said we were missing people who are told their illness is psychosomatic, and that they would share the totals with people earlier in their search.","changed":"/gap now has a seventh kind of uncounted care, \"Care that made you worse\": counted, never priced, and it judges no treatment. \"Told it was all in my head\" and \"psychosomatic\" now sit on the \"told it was nothing\" card. An invasive exercise test (iCPET) is now named on the ledger and left unpriced, with the reason; before, it was priced as the standard exercise test, a different test. Advice to \"push through\" is no longer misread as a procedure.","who":"A patient advocate in the fourteenth year of living with ME/CFS, in a written interview on 14 September 2026"},{"id":"22cbc49c-1b07-493f-92de-c517731934ab","date":"2026-10-01","said":"All four ranked care they went without as the heaviest of the five costs.","changed":"The ledger now shows care you went without right under the total: care you needed and did not seek, and care you asked for and were refused. It is a count, never a dollar figure, and one button adds it to the public count on the register.","who":"Four answers to the burden survey, sent through patient advocates from 9 to 15 September 2026,"},{"id":"1d7e38b3-3e7f-48bf-9abe-2bf073b10267","date":"2026-10-01","said":"The survey and interview questions assume someone who was a working adult when they got sick. They could be reworded for people who got sick as children, so the cost a parent or caregiver carries is counted too.","changed":"The burden survey now asks who is answering, the age when symptoms began and the age at diagnosis, with age bands under 18. A parent or caregiver answering for a child sees the five costs worded for the family. Answers are read in their own group by age at onset, and any group under 11 answers stays hidden.","who":"A patient advocate, by email on 12 September 2026"}],"firstAt":"2026-09-09T00:00:00","lastAt":"2026-10-21T21:12:21.867Z","generatedAt":"2026-11-07T06:21:07.973Z"}