A Note from the Editor
Pull up a chair.
A few words on what this newsletter is for.
I started showing up in rooms where research priorities were being set, and I noticed something simple: there were a lot of brilliant people at the table, and a few of us were there because we lived with chronic pain. We brought a different kind of expertise — the kind you earn by waking up to it every morning — but we often arrived alone.
PWLE Voices began with a hunch: that we’d do better together than apart. That if people with lived experience could find each other, share what they’re learning, and build a shared vocabulary, our voices in those rooms would carry further.
Inside this issue you’ll meet Laura, learn what a PWLE is, and see what a new NIH report means for advocates. Welcome — pull up a chair.
— Tom
Meet a Fellow PWLE
Getting to Know Laura
A retired kindergarten teacher on what advocacy looks like when you live with arthritis — and why community matters.
Laura spent her career teaching five-year-olds to read. Now, as a member of the NIH K12 advisory committee, she’s helping shape how the next generation of pain researchers learns to listen. In this issue’s feature, Laura talks about life with her husband Terry, what arthritis has taught her about patience, and the moment she realized her experience was the expertise the research room had been missing.
Foundations
Who Is a PWLE?
Four letters, one growing role in research — and the words a major new NIH report uses to describe it.
If you’ve spent any time around chronic pain research lately, you’ve probably seen the acronym: PWLE. Person — or People — With Lived Experience. In November 2025, the NIH published a report called ENGAGE that puts that role on the map. So why has the term caught on, what does it actually mean to be one, and where do you fit? A foundation piece for new and seasoned advocates alike.
Research Spotlight
What the ENGAGE Report Means for a Chronic Pain Advocate
A new NIH report sets out a roadmap for how researchers should work with us. Here’s how to read it — and how to use it.
On the surface, the November 2025 ENGAGE report is a 40-page document written for NIH leadership. Read closely, it’s also a tool for advocates. It names the standard a researcher should be held to. It names the supports a community partner should expect. And it puts NIH’s official language in our hands. Four bold recommendations, a five-stage Framework, and three concrete ways to put it to work.
Bring something to the table.
We made this for you. Now we’d like to hear what you think it should be.
PWLE Voices is one editor and an editorial board of PWLE and researchers, all advocates trying to do something we think matters. We could be wrong about what’s most useful. We could be missing the thing you need most.
So, here’s one question we want to pose this issue:
What’s one thing you wish a PWLE publication would cover and isn’t covered anywhere else?
Write us at editorpwlevoices@gmail.com. We read every response. What you say will shape what we post.
— Tom
We want PWLE Voices to work for every member of our community — however you read, listen, or take in information. If the current format is hard for you, or a different one would help — larger text, an audio version you can listen to, plain-language summaries, anything — we want to know.
Tell us what would make this easier to use: editorpwlevoices@gmail.com
— Tom