Open Letter regarding the RECOVER initiative to study Long COVID

The list of signees is ongoing. To sign on to this letter, please fill in the form here.

November 29, 2021

An Open Letter to NIH, NHLBI, NYU and all RECOVER Initiative stakeholders, including people with Long COVID:

Patient enrollment has already begun in the U.S. National Institutes of Health (NIH) RECOVER initiative, which “seeks to understand, prevent, and treat PASC [post-acute sequelae of SARS-CoV-2], including Long COVID.”

Yet, this initiative — which has raised the hopes of the millions who are struggling with the myriad challenges of Long COVID even as the COVID-19 pandemic persists — is in grave danger of failing at its goals. 

Patient advocates have warned about many fundamental concerns. But despite our standing — as people living with Long COVID who conducted the first research on the phenomenon, as those who host platforms for dialogue and peer support for tens of thousands of people with Long COVID, and as those with wide and deep personal and professional experience with Long COVID —  we have no access to important information about the RECOVER plans and often no way to tell if or how our concerns have been addressed. Further, even though some of us were invited to give input in the first phase, we have seen no ongoing mechanism for input nor confirmation that our input was put into action.

RECOVER has not fully honored its important promises of engagement with patients. 

Thus, we issue this letter to let stakeholders know we are moving forward in these specific ways:

  1. We are publicly sharing a set of immediate, pressing concerns about the initiative, echoed by many patient advocates. It is urgent to address them in order to have the best possible chance of the most effective research to help us get the answers we all seek in this health crisis.

Many of the issues on our current  List of Concerns have previously been raised in communication with both NIH and RECOVER leadership. But without any central, accountable system of community and patient engagement, we have no indication of what has been considered or how these concerns have been or will be addressed.

As Long COVID patients, we have an overriding interest in doing all we can to ensure that the RECOVER Initiative succeeds. Although it has been frustrating to experience barriers to collaboration thus far, we are nothing but eager to work proactively with you, your staff, and the leaders of the RECOVER Initiative in addressing pressing issues and moving forward together as productive collaborators.

In order to do so, we must begin with two fundamental structural adjustments to the Initiative to support the truly meaningful engagement of people with Long COVID:

  • A comprehensive and adequately resourced patient engagement structure must be rapidly created and sustained using existing best practices such as those in the NIAID HIV research structure that ensure empowered participation across all segments of RECOVER and include a collaborative of patients themselves. A draft proposal can be found here.
  • Post-viral illness experts, including researchers, clinicians, and patient advocates with expertise in conditions seen in Long COVID (including ME/CFS, postural orthostatic tachycardia syndrome [POTS] and other dysautonomias, and mast cell activation syndrome [MCAS]) must be integrated into the Initiative, as well as supported as a collective advisory panel in the RECOVER structure, as noted in an open letter from Body Politic to the NIH in April 2021.
  1. We are inviting all people with Long COVID who are interested in RECOVER, who have made recommendations, or who have enrolled in the initiative to share your comments and questions in this form, which we will make available to RECOVER leadership.

We are issuing this invitation because of our firm belief in transparency, in the wisdom of patients, and in patient-led research. However, while we will collect this information and make it available to the Initiative, we stress that it is no substitute for comprehensive, ongoing and accountable patient input — the responsibility for which rests upon the RECOVER Initiative itself.

  1. We request meetings with the leaders of the RECOVER initiative, at all levels, including the NIH, NHLBI and NYU, to communicate our concerns and to learn what actions RECOVER leadership has taken and will be taken to ensure necessary changes. 

We will communicate the results of these meetings to the Long COVID community. While we are taking this step in order to best ensure that we understand what, if anything, is being done to address significant concerns raised by patients, we ultimately want to see a truly meaningful, staffed and sustained patient engagement structure across all areas of RECOVER.

Signed,

The Patient-Led Research Collaborative

The list of signees is ongoing. To sign on to this letter, please fill in the form here.

Organizations who have signed on:

  • Body Politic
  • Long COVID Alliance
  • Covid-19 Longhauler Advocacy Project
  • Long COVID Physio
  • Long COVID Families
  • Utah COVID-19 Long Haulers
  • Long Covid Support
  • Long Covid Austria
  • Long Covid Scotland Action Group
  • Long Covid Canada
  • Long Covid Greece
  • Covid Long-Haulers Support Group Canada
  • Marked by COVID
  • Dysautonomia International
  • #MEAction
  • Solve ME/CFS Initiative
  • Treatment Action Group
  • ACT UP Philadelphia
  • AIDS Action Baltimore
  • Housing Works
  • ADAP Advocacy Association
  • Community Access National Network (CANN)
  • University of the Pacific
  • Millions Missing Canada
  • Pandemic Patients
  • PlusInc
  • Springboard HealthLab
  • West Branch Pride
  • NoVA ME/CFS, FMS, OI, & LC Support Group
  • #MEAction Maryland Chapter
  • Support Fibromyalgia Network
  • The Ehlers-Danlos Society
  • LymeDisease.org
  • CircumSTANCE (MIS-C Awareness)
  • Rose Cottage Doc Blog
  • Cranky Queer Guide to Chronic Illness
  • Coders Against COVID
  • Bradley Research
  • The Phoenix Academy / TRYARTEK INC
  • Topflight Apps
  • Weber Speech Therapy
  • Occupy Bergen County
  • Unitarian Universalists for a Just Economic Community
  • The Well Project
  • The Grace Tree Foundation
  • Soma-Source

Individuals who have signed on:

  • Elizabeth Pugh
  • Sarah Brodksy
  • Yannik Thiem
  • Valentina B. Cohen, JD
  • Shaney Wright
  • Kimberly Reeder
  • Alisa L. Valdes
  • Kelly Raihani, Royal Brompton Hospital
  • Alette Jansen
  • Jorge A. Caballero, MD, Coders Against COVID
  • Sarah Robertshaw
  • Debbie Buckley
  • Micaela McCarty
  • Michelle Zimmerman, PhD
  • Dr. Elisa Perego
  • Peter Neehus, Neehus2
  • Simon Nicholas Smith
  • Mike Hamilton
  • Charles McCone
  • Claire Higham
  • Renee Pond
  • Alexandra Konczak
  • Brittany Porter
  • Thane Fredrickson
  • Dr. Helen Cook
  • Meredith Cricco
  • L Dean
  • Jen Rourke
  • Rebecca Logan
  • Amy Fein
  • Kerri McCrossen Morrison
  • Kathryn Tancock
  • Marsha Gresko
  • Mary Rankin
  • George Cortez
  • Julia Moore Vogel
  • Dr. Tjalco van Rees Vellinga
  • Katie Lazell-Fairman
  • Starsh Williams
  • Susan Dodson
  • Tatiana Trifan
  • Todor Stoyanov
  • Dominic Moss
  • Joseph Simone
  • Todd E. Davenport, PT, DPT, MPH, OCS, University of the Pacific
  • Richard Vallee
  • Georgios Liogkas, MD
  • Robyn Sadler
  • Kate Dale
  • Sara Whitestone
  • Karen Humsey
  • Amy Barron
  • Jesse Urban
  • Lia Pas
  • Tania J. Spencer
  • Steve Denny
  • Kevin Chirnside
  • Christine Tully
  • Carrie Anna McGinn
  • Miles Griffis
  • Dr. Jennifer Curtin, Center for Complex Diseases
  • Carrie Spangler, MD
  • Art Berisha
  • Meghan Flesch
  • Sally Jones
  • Louisa Wright
  • Winston Blick
  • JD Davids, Cranky Queer Guide to Chronic Illness
  • Liz Howells
  • Suzanne Hooker
  • Edwin Suominen
  • David Marshall, The Phoenix Academy / TRYARTEK INC
  • Lauren Thompson
  • Abdurahman Ahmed
  • Emily Bazalgette
  • Amy Seitz
  • Becca Blackwood
  • Emily Johnson
  • Molly Adams
  • Ranae Crossing
  • Lisa Agyen
  • Julie Rehmeyer
  • Natacha Spencer Martins
  • Sheryl Hutcherson
  • Douglas H Adams
  • Alicia Gaffney, RN
  • Joe Tuan, Topflight Apps
  • Aaron Hoitink
  • Cathleen Jonas
  • Jestin Joseph
  • Kirk James Murphy, MD
  • Ryan Prior
  • Sarah Digby
  • Wendy Kloiber
  • Alyssa Minor
  • Meriam Rhallab
  • Brendan OHagan
  • Tim Hughes
  • Patrick J Hodges
  • Di Mohr
  • Sophia Bunk
  • Kelly Moran
  • Emilie Besnard
  • Amanda Beaven
  • Kathryn Finton
  • Stavroula Gkogkou
  • Emily Fraser
  • Michael Hidalgo
  • Emma Copeland
  • Dr. Marianne Inglis
  • Naradja Wissmar
  • Dr. Jody Joy
  • Jane Ormerod, Long Covid Scotland Action Group
  • Eveliina Leinonen
  • Denise Firth
  • Dr. Katherine Cushing
  • Jacqueline Mburu
  • Vibeke Vind, MSc
  • Yazid HISSI
  • Sharon Shaw
  • Michael Crowther
  • Simon Peters
  • Carl Joseph
  • Janis Armstrong
  • Oksana Zhuravel
  • Mel Purnell
  • Luis Lopez
  • Colin Brazier
  • Louise Chapman
  • Dr. Rosanna Wregor
  • Kathryn Bach
  • Jennifer Spotila
  • Robert Pettit
  • Elly Brosius, NoVA ME/CFS, FMS, OI, & LC Support Group
  • Dr. Kerry Smith, Rose Cottage Doc Blog
  • Susan Taylor-Brown, PhD
  • Melinda Lipscomb, #MEAction Maryland Chapter
  • James Stratton
  • Derrick Mapp
  • Emmanuelle Marquis
  • Dr. Alex Carter
  • Craig Golden
  • Sharon Adams
  • Dennis Clark
  • Renae Wilhelm
  • Dr. Marie-Claire Grounds
  • Mae Smith
  • Juliette Lamoureux
  • Jennifer Josiah
  • Deborah Alexander
  • Teresa Biermann
  • Felicia Alfieri
  • Nicole Padilla
  • Amy Boylan
  • Kathryn Manchip
  • Sage Doshay, PhD
  • Alexandra Glanville
  • Stacey Brady
  • Linda Hollenweger
  • Stacy LaVigne
  • Chloe Porteous
  • Laura Henderson
  • Charlotte Haley
  • Wilhelmina Jenkins, MEAction GA
  • Claire Wedderburn
  • Henry Scott
  • Melissa Lehn
  • Arna FiMambro Lewis, MEAction
  • Melissa McLaughlin
  • Emma Accorsi
  • Angelica Parente
  • Marianne Paarsgaard Kristensen
  • Fiona Lowenstein
  • Laura Fitton
  • Astrid Meyer-Knutsen
  • Justine Hodgson
  • Liz Burlingame
  • Dr. Alexis N. Misko
  • Kevin Chirnside
  • Mark Wyn
  • Diana R. McCague
  • Abraham Fox-Rosen
  • Danielle Keifert
  • Mary Krome
  • Jay Grandis, West Branch Pride
  • Rebecca Subar
  • Dr. David Davies-Payne
  • Sofia Gurovich
  • Amanda Morris
  • Meghadeepa Maity
  • Melissa Salus
  • Dana Gosnell
  • Kathleen M. Flaherty
  • Sarah Horton
  • Karen Pike
  • David Watson
  • Nicole Lewis
  • Federico Finetti
  • Catherine H. Romatowski
  • Denno Wiggle
  • Laurie Pelis
  • Darren Brown, Long COVID Physio
  • Sean Passmore
  • Rev. Joseph Chapman
  • Rachel Moore
  • Paul Robert Green
  • Sissel Sunde
  • Nine E. Steinkopf, www.melivet.com
  • Anette Gilje
  • Kristine Nilsen Oma
  • Venke Midtlien
  • Sophie Gordon
  • Andreas Berge Kamberg
  • Frida Dahl Hovdar
  • Kristine Kornelia Paulsen
  • Beate Eiklid
  • Britten Pascale
  • Rita Berger
  • Iren Karin Smaage Øien
  • Jacqueline Rushkowski
  • Heather Works
  • Tom Christian Dahle Nekstad
  • Arne Nordvang
  • Trine Berit Forfang Josdal
  • Ellen Kallevik
  • Elizabeth B Burlingame, MEAction
  • Katja Brandt, PhD
  • Linn Sjåfjell
  • Elise Lippert
  • Andrew Jenkins
  • Grete Lilledalen
  • Helen McGlasson
  • Melissa Fyman Larsson
  • Dr. Shanti Albani
  • Frøydis Lilledalen
  • Tone Løken
  • Marit Skotheim, MSc
  • Jay Squires
  • Anette Schjødt Thomsen
  • Neha Nims
  • Shalini Prasad
  • Sumit Kumar
  • Soumya Varanasi
  • Jesse Nims
  • Stuart Sith
  • Corey Rubib
  • Christine Jamieson
  • Amy Donahue
  • Liv Anne Bjurgren
  • Angela Marie Weber, Weber Speech Therapy
  • Rebecca Gummere
  • Bobbi Leder
  • Catherine Haslam
  • Anne Romatowski
  • Elin Drake
  • Sharon Cifranic
  • Kevin Cranston
  • Adina Gerver
  • Jennie Spector
  • Mary J San Miguel
  • Jennifer Walsh
  • Erika Schneider
  • Kelly Marie Keeney
  • Toni D Newman
  • Sally Jane Gellert, Occupy Bergen County
  • Kavya Sanghavi
  • Terry L Lowman, Unitarian Universalists for a Just Economic Community
  • Krista Martel, The Well Project
  • Johannes Bürger
  • Claire Hastie
  • William Hoffman
  • Lisa Thorne-Izes
  • Elizabeth Lovinger, Treatment Action Group
  • Andrea Bengtzen
  • Kristin Danielle Urquiza, Marked by COVID
  • Tiffany Crawford
  • Selene Seltzer
  • Susan Perron
  • Barbara Fifield
  • Lisa Geiszler
  • Laurie Bedell, RN
  • Pia Sander
  • J Elizabeth Bauer
  • Michael Sieverts
  • Mary E Dimmock
  • Lisa M Bordner, Soma-Source
  • William McColl, McColl Strategies, LLC
  • Rebecca Kennison
  • Dreama Gale Pritt
  • Dr. Heidi Connahs
  • David Skoog
  • Clarisse Thomas
  • Matthew Saavedra
  • Elizabeth Breiner
  • Sylvia Westrup
  • Jennifer Minhas
  • Amy A Fischer
  • Charlene Cintron
  • Michelle Carroll
  • Mark Anderson
  • Michelle Anne Swauger
  • Jennifer Palmer
  • Jennifer McPherson
  • Jonah McGarva, Long Covid Canada
  • Dianne Sheehan
  • Therese Russo
  • Michael Louella
  • Anna Stalter
  • Nicole Mohrmann
  • Regina Capasso
  • Mallory Stanislawczyk CPNP
  • Courtney Garvin
  • Julie Miller
  • Elizabeth Weaver
  • Matthew Doran
  • Maud De Proost
  • L Deanne McCoy
  • Jeff Diver
  • Melissa Vasquez
  • Whitney Fox
  • Michelle van Kriedt
  • Tamara Handler
  • Ursula Wilderson
  • Emma Miller
  • Eleni Iasonidou, Long Covid Greece
  • Diane Colman
  • Sharon Herrick
  • Sandra Segeren
  • Peter Herrick, MPH MEd
  • Georgia Christenson
  • Vicky van der Togt
  • Julie Lamarche
  • Dana Ann Chrstienson
  • Arthur Mirin
  • Andrea Tomasek
  • Frederick Hahn
  • Diana Marie Orem
  • Amy Moore
  • Emily Fraser
  • Rosemary Hahn
  • Alicia Gaffney
  • Lisa Alice Bryan
  • Sharon Simas
  • Lisette Goff-Maness
  • Katie Halberg
  • Alicia Sims Woods
  • Eileen Kelly
  • Allison Guy
  • Mary Rinaldi
  • Anjela Johnston
  • Faatimah Barrie
  • Jose de Marco, ACT UP Philadelphia
  • Karl Locke

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