- Issue 2From Awareness to Partnership
- Issue 3Origins — with Penney CowanYou are here
- Issue 4Awareness That Moves Research
- Issue 5Awareness Isn’t Action
- 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 — Origins — with Penney Cowan. September did not put itself on the calendar. In 1980 Penney Cowan put a notice in her church bulletin, and the organization that grew out of it built the coalition that made this month mean something. It passed thirty partner organizations by 2003 and stands at more than eighty today, among them the NAACP and the American Cancer Society. If you are reading a Pain Awareness Month issue, you are reading something she started.
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.
Meet a Fellow PWLE
Two Voices, One Table
Penney Cowan built one of the country’s first peer networks for people with chronic pain out of her garage. Scott Cowan paid for the phone line and supported her every step of the way.
She went into the Cleveland Clinic’s pain program determined to prove it wouldn’t work. She stayed seven weeks — she still holds the record — and came out a functional person with an idea too good to keep to herself. What followed was a notice in a church bulletin, seven support groups a week driven to after dinner, a lottery ticket that paid for a second phone line, and one of the first organizations of its kind in the country. Fifty-eight years of marriage in, the Cowans talk about the work of changing how pain is treated — and who helps carry it.
Care Partner Corner
Pain in L.A. or Pain in Paris
More than thirty-six years beside a husband who lives with chronic pain — and the word she chose for her place on the team.
Marianne Muellerleile is a working actor of fifty-four years, a lifelong traveler, and a woman of deep faith. She is also the editor’s wife, and the care partner beside him for more than thirty-six years. She chose the word herself: not caregiver, care partner. In her own words, she talks about the small inventions that keep loneliness at bay, the price a care partner’s own body quietly pays, and why she insists this is not a sad story but a picture of a team.
Where we sit: Care Partner Corner starts at the editor’s own kitchen table. Marianne is married to the editor of PWLE Voices; the husband in the piece is him. Full disclosure runs at the top of the article.
Tools & Resources
Every Glossary Translates. Ours Also Warns.
There are good glossaries for understanding a study. This one is for understanding a room.
There is a moment in most research meetings where you stop listening and start decoding. Someone says the patient voice will be incorporated. Someone says we’ll circle back to patients. Was that a plan, or was that upholstery? Our PWLE Patient Engagement Glossary runs to 205 entries and is built to sit open in your lap while someone talks — and it ends with thirteen red flag phrases that no institution could publish about itself. New in v3.4: what an honorarium can cost you if you’re on SSI. Free, and always will be.
Tools & Resources
Finding the Real Ones
Trusted messengers can help a clinical trial at every phase — if researchers and people with lived experience can find each other first.
Every community already knows who its trusted messengers are. The front-desk person who has been there twenty years. The forum moderator everyone forwards articles to. Nobody wrote the list down, and that gap is the whole problem. This piece closes it from both directions — the one question a research team should be asking, and what a person with lived experience can do to stop being invisible from where the researchers sit. The National Institutes of Health said much the same thing in November, and its Director signed off in December.
Worth a Listen · Installment One · A continuing article
From Guest, to Producer, to Host
Three shows, arranged on purpose. In the first we are the guest. In the second we make the show. In the third we run it.
There are days I cannot read. The pain takes the piece of attention that holds a line of text still. On those days I can still listen — and that is the reason for this article. Three shows at a time, chosen because a person with lived experience sits somewhere in them other than the case study. This time it is Chronic Pain Reset, where a researcher keeps seating lived experience at the table; PAINCAST, presented and co-produced by a patient partner on the research consortium itself; and Not Just Patients, run by two people who make the institutions answer. All three are free. I could confirm transcripts for none of them, which is its own finding.
A continuing article. Worth a Listen returns every other issue — next in Issue 5, on the shows about engagement itself.
Research Update
The Month That Started Anyway
Pain Awareness Month was built to make invisible pain visible. Twenty-five years on, the evidence says visibility was only ever the first step.
The first Pain Awareness Month was observed in September 2001. Days later, the eleventh of that month took the country’s attention entirely, and a project built to make invisible suffering visible had barely drawn breath. The work went on — a formal kickoff the following year, and a coalition that grew to more than eighty groups, among them the NAACP and the American Cancer Society. This piece traces where the month came from, what awareness campaigns measurably do and don’t move, and why its founder never meant it to stop at being seen.
Open Calls
Where Your Voice Is Needed Now
Research panels and networks looking for people with lived experience — with an honest note on the timing of each.
Join the PURPOSE Network — open now, rolling
PURPOSE is an online career-development network funded by the NIH HEAL Initiative. It gives pain researchers and people with lived experience one place to find each other and to hear about openings, funding, and meetings before they close. Registration is at painresearchers.com. The site is built primarily for researchers, so if you are joining as a PWLE, write to PURPOSE@painresearchers.com and say so — ask them how a person with lived experience joins. That is a fair question, and asking it is not an imposition.
Become a PCORI Merit Reviewer — open now, rolling
PCORI seats patients and other stakeholders on the panels that score research applications, with weight equal to the scientists in the room. Reviewers are trained, and the work is compensated. Applications are accepted year-round and you hear back in about a week. The panel meeting is in person, and PCORI makes accommodations where a disability affects your ability to take part — ask for what you need. Applicants must live in North America. If you want to influence what gets funded, this is the door. pcori.org → Become a Merit Reviewer
Apply to a PCORI Advisory Panel — opens November
PCORI’s advisory panels — among them the Patient Engagement Advisory Panel — shape funding priorities and engagement standards. Applications are accepted between November and March, and the Board approves new panelists at its public meeting in September. So this one is not open the month you are reading it. The point is to have it on your calendar before the window does. pcori.org → Advisory Panel Openings
A note on how I choose these: I serve on PCORI’s Patient Engagement Advisory Panel and as a PCORI merit reviewer, both paid by honorarium, and as a PCORI Ambassador, which is volunteer. I also co-chair a special-interest group at the U.S. Association for the Study of Pain, unpaid. Two of the three openings on this card are PCORI’s. I list them because they are real and open to any person with lived experience — not because of those roles — and I would rather say that plainly than leave you to wonder. Dates were verified at press time. Confirm the current deadline at the linked site before you rely on it. — Tom
Featured — Two Voices, One Table
chronicpainla.com/two-voices-one-table
Care Partner Corner — Pain in L.A. or Pain in Paris
chronicpainla.com/care-partner-corner-marianne
Tools & Resources — Every Glossary Translates. Ours Also Warns.
chronicpainla.com/every-glossary-translates
The glossary itself: chronicpainla.com/pwle-glossary
Tools & Resources — Finding the Real Ones
chronicpainla.com/finding-the-real-ones
Worth a Listen — From Guest, to Producer, to Host
chronicpainla.com/worth-a-listen-installment-one
Research Update — The Month That Started Anyway
chronicpainla.com/the-month-that-started-anyway
Open Calls — Where Your Voice Is Needed Now — on this page, above.
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.
Suggest a featured PWLE. Know an advocate whose story belongs in a future issue? Tell us.
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. Marianne Muellerleile is the editor’s wife; that relationship is disclosed at the top of her piece and on its card. Penney Cowan has been the editor’s mentor for years, and that is disclosed at the top of the Featured conversation. “Finding the Real Ones” carries a first-person disclosure because it argues for infrastructure the editor is trying to build.