August is Severe ME/CFS Awareness Month–a time to reflect on the toll this disease takes on those suffering from severe ME/CFS symptoms and advocate for better research, support, and treatment.
About 25% of people living with ME/CFS are severely ill, with the majority of them being housebound or bedbound at some point during their illness. They are often unable to perform everyday tasks like eating, showering, and even standing without assistance. These severe symptoms can prevent members of our community from accessing medical care and support, and many are isolated from family and friends.
Severe ME Awareness Month offers an opportunity to further advocate for research, support, and treatment for severe ME/CFS. Studying the severely ill population is vital to understanding the full spectrum of the disease, improving care pathways, adapting research methods for vulnerable populations, and ensuring that research priorities reflect the realities of those most affected.
The people most severely affected by ME/CFS are often the least able to travel and the most easily left out of research. That’s why Solve prioritizes funding for research studies that are built to reach them, like the ones listed below.
- The SIGNAL Study: Solve recently selected the Renegade Research team for a Catalyst Award in support of their decentralized trial for at-home medical devices. Designed to be accessible to the 25% of patients who are housebound and severely ill, the trial enables researchers to collect data that could lead to better treatment and support strategies for the largest–yet least studied–subgroup of the ME/CFS population. In November, we’ll host the SIGNAL team for a webinar in which you can learn more about the study and how to get involved. Stay tuned for more details!
- The IVO-21 Study: Dr. Jay H. Chung’s study was selected for our Catalyst Award funding to test IVO in preclinical mouse models to see if it boosts cellular energy and reduces inflammation—mechanisms believed to drive symptoms such as fatigue and brain fog. This inexpensive small-molecule therapy, taken as a simple oral pill, targets two of the most debilitating and poorly treated aspects of ME/CFS.
On September 8, Dr. Chung will join us for a free educational webinar to discuss the IVO-21 study. Register for it here.
- The Low-Dose Rapamycin Study: Simmaron Research has built a strong foundation for using low-dose rapamycin to reduce ME/CFS-associated fatigue. Solve supported this work with Catalyst Award
funding to enroll more participants and to collect more samples from more time points. The study is decentralized, so people can participate from home. The study team has also adjusted blood draw volumes, provided additional assistance with patient surveys, and conducted surveys via phone for severe participants.
Watch our recent webinar with the Simmaron Research team here, and read our summary of their most recent publication co-funded by Solve here. - unhide®: Solve has joined forces with the Brain Inflammation Collaborative (BIC) for the unhide® online health platform. Unhide® was designed with direct input from people with severe symptoms and the researchers who study them. Participants enter symptom data through web-based surveys and a mobile health-tracking app, and surveys can be completed slowly, bit by bit, and entirely from home. unhide® enables patients and caregivers to identify patterns and visualize symptoms over time, and participants can also choose to be contacted and recruited for clinical trials or research studies. Data on the lived experiences of the severely ill is reflected in the registry, enabling researchers to better understand and study ME/CFS, Long Covid, and other associated chronic conditions. Register to join unhide® here.
Check out our resources for patients and caregivers and our resources for medical providers for more information on Severe ME/CFS.
Five Organizations Unite For A Conversation About Severe ME/CFS
Solve CEO Emily Taylor will join representatives from Bateman Horne Center, Open Medicine Foundation (OMF), and #MEAction, and the WIMEL Writers (What Is Myalgic Encephalomyelitis Like?) for a special “Coffee” with a Clinician in recognition of Severe ME/CFS Awareness Month on Wednesday, August 12, at 9:00 am PT / 12 pm ET.
In this free online event, panelists will discuss the unique considerations of severe ME/CFS, recognizing the importance of lived experience, continuing education, accessible research, and patient advocacy.
Register here.