- Issue 2From Awareness to Partnership
- Issue 3Origins — with Penney Cowan
- Issue 4Awareness That Moves Research
- Issue 5Awareness Isn’t ActionYou are here
- Issue 6The Ecosystem of Observances
- Issue 7Carrying September Forward
Six issues this month, numbered straight on. Issue 1 came out in June; Issue 8 follows in the fall.
Every September, the pain community marks Pain Awareness Month — a month for making invisible pain visible. PWLE Voices is marking it with six issues across the month: one community, many conditions, better together.
This issue’s focus — Awareness Isn’t Action. A month of ribbons does not pay an advisor or protect anyone’s benefits. This issue is about what comes after being seen: a researcher who lives with pain and still insists on patient partners, a woman who watched research priorities get set from inside the agency that funds them, what to ask for when a project says there is no budget, and a federal comment window that closes on October 26.
September is also Rheumatic Disease Awareness Month, launched by the American College of Rheumatology in 2016 to cover the hundred-plus conditions under the rheumatic umbrella — many of which bring chronic pain with them.
A Researcher With Lived Experience
Because They Breathe
Ryan Wexler studies pain and has lived with it since he was thirteen. Ask him whether that lets a study team skip having people with lived experience at the table, and he will tell you it does not.
Thirteen minutes into our first conversation, Ryan Wexler mentioned his back almost in passing. He is twenty-nine, an NIH HEAL K12 scholar, and a naturopathic physician who studies the low back pain he has lived with through multiple surgeries. In this issue he answers the argument that a researcher with lived experience makes patient partners unnecessary — and offers the most practical advice either of us has heard on how a first meeting should actually go.
Meet a Fellow PWLE
Getting to Know Laura Wandner
She lived with chronic pain while working inside the agency that funds pain research. What she saw from that side of the table — and what she wants this community to know about the doors in it.
Laura Wandner has seen pain research from more sides of the table than almost anyone — from patient care at the VA and Walter Reed to the Branch Chief’s desk at NIH’s Office of Pain Policy and Planning — all while living with chronic pain since her teens. She talks about how research priorities really get set, why tokenism is usually a training problem rather than a character problem, and what one committee member’s careful read did to a study budget. For anyone who assumes the NIH is a fortress with no door in it, she has a map.
Tools & Resources
“There’s No Budget”: What to Ask for Instead
When a project cannot pay you, that does not mean your time is free. What to ask for instead — and how to make sure the next round has a line for it.
Sometimes there really is no money. A grassroots project with no grant behind it. A planning group meeting months before the funding lands. The question is not whether to be offended — it is what to ask for instead, so that “no cash” never quietly becomes “no cost.” This piece lists what a project can usually cover even when it cannot pay a fee, from travel and connectivity to care costs and accessibility, and it ends with the ask that matters most: a line in next year’s budget.
Worth a Listen · Installment Two · A continuing article
Three Shows, and What It Takes to Keep One On
The podcasts about engagement itself. Staying on the air turns out to be its own engagement problem.
Last time the three shows made a clean ladder: guest, producer, host. This time the ladder does not hold. The shows about engagement itself — asPERusual, The Bridge: Your Health Your Voice, and the Patient Partner Innovation Community Podcast — are each doing the work and each showing the strain of it. One is on a break its host announced and has not come back from. One has not posted in more than a year. The third is kept on by a university program with pharmaceutical sponsors. All three are free, and this time two of them carry transcripts. That is the finding, and it is worth hearing before you go looking for a room where your time will be paid for.
A continuing article. Worth a Listen returns every other issue — next in Issue 7, on the shows built around a single diagnosis.
Research Update
The One They Started With
NIH accepted every ENGAGE recommendation in December. The first one it built a public process around was telling participants what the study found. The draft policy landed in August, and comments close October 26.
NIH accepted the ENGAGE recommendations in December 2025 and said it would begin implementing in 2026. Nine months on, one recommendation has a published timeline, a named office running it, and now a draft policy with a deadline on it — the one about telling participants what the study found. NIH asked before it drafted, then drafted and asked again. Responses are due October 26, and three of the questions are addressed to participants rather than researchers.
Open Calls
Where to Put Your Hand Up
Three places your experience is being asked for right now. One of them has a deadline, and it is the one that costs you the least.
This issue is called Awareness Isn’t Action, so here is where awareness has somewhere to go. NIH published its draft policy on telling participants what a study found on August 27, and comments close October 26 — three of its questions are addressed to participants rather than researchers, a paragraph counts, and you may answer anonymously. Alongside it: PCORI’s merit reviewer applications, open year-round, and the advisory panel window that opens in November. Each listed with what it actually asks of you.
Featured — Because They Breathe
chronicpainla.com/because-they-breathe
Meet a Fellow PWLE — Getting to Know Laura Wandner
chronicpainla.com/getting-to-know-laura-wandner
Tools & Resources — “There’s No Budget”: What to Ask for Instead
chronicpainla.com/theres-no-budget
Worth a Listen — Three Shows, and What It Takes to Keep One On
chronicpainla.com/worth-a-listen-installment-two
Research Update — The One They Started With
chronicpainla.com/the-one-they-started-with
Open Calls — Where to Put Your Hand Up
chronicpainla.com/where-to-put-your-hand-up
Share your story or your reaction. Reach the editor at editorpwlevoices@gmail.com. We read every message.
Subscribe. Email editorpwlevoices@gmail.com with “Subscribe” in the subject line. Every issue also stays free to read at chronicpainla.com — no account, no paywall, no advertising.
Tell us we got something wrong. If a date has moved, a link has died, or a fact does not hold up, write to us. We would rather print a correction than leave an error standing.
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Featured pieces and contributor pieces are reviewed and approved by the named contributors before publication — and every contributor is offered the whole issue to edit, not just their own piece. Final editorial responsibility rests with the editor. The editor serves on the advisory committee of an NIH HEAL K12 program of which Ryan Wexler is a scholar; that overlap is disclosed at the top of his profile. The Stay Engaged listings carry a note naming the editor’s paid and unpaid roles at PCORI.