A special message from Solve M.E. President and CEO Emily Taylor
With so much speculation about the future, it’s easy to feel unsettled – and uncertainty is especially hard for people with ME/CFS and Long Covid who already need to plan around their illness. Since 1987, Solve has been here for you, and our commitment to advocating for the ME/CFS and Long Covid communities remains stronger than ever.
I remain optimistic and undeterred. No matter what the future holds, we will not stop until we achieve our vision: A world free of ME/CFS and Long Covid. In that spirit, I’d like to share with you some of the things that are currently fueling my sense of hope.
- The Edge of Medicine Conference
In October, Solve was invited to participate in The Cohen Foundation’s Edge of Medicine Conference in New York City. The conference brought together researchers, clinicians, patients, caregivers, and stakeholders to explore what lies at the cusp of medical understanding, bringing key topics into public discourse, and inspiring innovative solutions to pressing health issues – including chronic Lyme, ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses (IACCIs).
Founders Steven and Alexandra Cohen have provided over $1.2 billion in funding to charitable causes, including the Cohen Center for Recovery From Complex Chronic Illnesses (CoRE) at Mt. Sinai, which provides clinical care for patients with ME/CFS, Long Covid, chronic lyme, Ehlers-Danlos syndrome (EDS) and other infection-associated chronic conditions and illnesses (IACCIs).
Solve invited several community members to attend as our guests. I was so inspired by the brilliant people I met at this event and was thrilled to reconnect with Dr. Akiko Iwasaki (Sterling Professor of Immunobiology at Yale School of Medicine), a wonderful friend of Solve and a hero to the IACCI community. I came away from the conference assured of the progress we’ll make with such innovative researchers and patient advocates steering our path forward.
- Simmaron Research Study Findings and the Rapamycin Trial
Dr. Avik Roy is the chief scientific officer and chief of neurobiology at the Simmaron Research Institute, a nonprofit organization researching ways to treat patients with ME/CFS or Long Covid. In 2022, Dr. Roy won a Solve Ramsay Research Grant to develop new models for studying ME/CFS. Dr. Roy’s inventive team created an interesting new experimental model for this study, which they used to dissect the metabolic missteps responsible for this effect.
Dr. Roy and his team have now published a paper in the Journal of Central Nervous System Disease that explains why some patients with ME/CFS experience orthostatic imbalance (sharply decreased blood pressure when they stand), which can cause dizziness, lightheadedness, or even fainting. Read our summary of the study here.
Solve is proud to have funded this innovative study that has already resulted in two findings that could lead to potential treatable mechanisms as larger follow-on studies are conducted!
Simmaron is also in the midst of an exciting Rapamycin trial in ME/CFS and Long Covid. This is the first biomarker-driven treatment trial ever for ME/CFS, and Phase 1 of the trial is on its way to results!
- Ampligen Clinical Trial Results Indicate Success in Treating Fatigue in People with Long Covid
In 2022, Solve hosted leaders from AIM ImmunoTech (an Immuno-pharma company focused on the research and development of therapeutics to treat multiple types of cancers, immune disorders, and viral diseases) and other researchers for a webinar in which they discussed their plans for an Ampligen clinical trial and shared insights from real-world use of Ampligen to treat patients with ME/CFS and Long Covid. (Watch the webinar here.)
The trial was launched, and in September AIM announced that analysis of their clinical patient data underscored Ampligen’s potential to improve fatigue in people with moderate-to-severe Long Covid. Should Ampligen be approved to treat Long Covid, it would clear a path for off-label use to treat fatigue in people with ME/CFS and other IACCIs.
AIM Scientific Officer Christopher McAleer, PhD was invited to be a panelist on Study Design at the National Institutes of Health’s recent event “RECOVER Treating Long COVID (TLC)– Navigating the Pathway Forward” meeting. Read our summaries of the RECOVER-TLC Event Day One (Lived Experience) and Day Two (Interventions, Study Designs, and End Points), Day Three (How Will We Move Forward).
- Educating Medical Providers with the Inclusion of ME/CFS and Long Covid in Grand Rounds
Along with Dr. Meredith Cricco I recently co-authored an op-ed piece published in The Rochester Democrat explaining the importance of educating medical providers about ME/CFS, Long Covid, and other IACCIs. We encouraged clinicians to attend the Rochester, NY Grand Rounds and engage with emerging research to best provide care for this growing population of patients.
The Internal Medicine and Neurology departments at the University of Rochester Medical Center hosted Dr. Brayden Yellman, medical director of the Bateman Horne Center (which focuses on clinical care, research, and education about ME/CFS and Long Covid).
Dr. Yellman delivered diagnostic and management guidance for these diseases during departmental Grand Rounds, which area clinicians are invited to attend in person or through the URMC website.
I’m hopeful that the continued inclusion of ME/CFS and Long Covid in Grand Rounds will give clinicians the tools needed to help patients and improve outcomes and access to care.
You Give Me Hope!
People impacted by ME/CFS and Long Covid are my friends and family, coworkers and colleagues, neighbors and community. I see you. Every day, all around us. Maybe others are still learning to see past the “invisible” disability, but there are far more allies today than yesterday. And, with our efforts, there will be even more allies and supporters tomorrow.
Why do these items in particular give me hope? Because the broader political climate has nothing to do with their success and these events highlight how progress on chronic illness is continuing at many levels. I am so proud of Solve’s contributions to these and so many other successes. And, our best work is yet to come.
Will you be part of our movement?
I hope that hearing about this progress has brightened your day and lifted your spirits. And, if you are able, please consider a contribution to Solve so that this work, and our many other initiatives, can thrive next year. Please donate today!
