Frequently Asked Questions

What are MECFS & Long Covid?

Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) is an infection-associated, multi-systemic chronic illness. There are no approved treatments, and research is grossly underfunded in proportion to the number of patients and the severity of the disease burden. There are very few clinicians with expertise in treating patients. On average, patients with ME/CFS take 8 years to receive a diagnosis. We invite you to learn more at ME Action.

Long COVID is a condition that affects patients after being infected with Sars-Cov-2 (also known as COVID-19 or Coronavirus from the 2020 Global Pandemic). At least 50% of people diagnosed with Long COVID meet the diagnostic criteria for ME/CFS. We are including patients with Long COVID as there are many similarities and they are commonly being studied together.

Many patients with Long COVID also experience organ damage, cardiovascular disease, pulmonary damage, brain damage, increased dementia risk, and clotting issues that can lead to loss of limbs, pulmonary embolism, heart attack, and stroke. We invite you to learn more at the Long Hauler Advocacy Project. To understand just how complex Long Covid is, please check out this article at Science Magazine by Dr. Zihad Al-Aly and Dr. Eric Topol - Solving the Puzzle of Long Covid and this paper published in Nature by Hannah Davis, Lisa McCorkell, Julia Moore Vogel, and Eric Topol. .

What is citizen science?

Citizen science is research conducted with participation from the public, non-traditional researchers, and, in our case, the patient community.

Citizen science can be used as a methodology where public volunteers assist in collecting and classifying data, thereby enhancing the scientific community's capacity. It can also involve more direct involvement from the public, with communities initiating projects to research environmental and health hazards in their own communities. Participation in citizen science projects also educates the public about the scientific process and increases awareness about different topics.

What is a patient-led organization?

A patient-led organization means that the core team of leadership all have direct experience as patients with MECFS or Long Covid or they are caregivers for patients with our conditions. Our team is led by patients and in service to patients. This is different than most research entities studying our illnesses who are led by traditional academic researchers who have not experienced our illness first hand.

Being patient-led makes us uniquely able to understand the patient experience, tap into underutilized assets of patient wisdom, see potential breakthroughs that researchers not living in our bodies can’t see. We believe that being patient-led is our greatest asset. 

We are deeply grateful to the researchers who recognize the value of the patient experience and contributions to research and applaud all of your efforts to increase patient involvement in your research.

What is decentralized research?

Decentralized research is research conducted outside of the traditional academic and market driven pharmaceutical development systems. Through decentralized research, we aim to enhance participant access, improve retention rates, be more cost-effective, increase data quality, move faster with participant recruitment, and test multiple interventions at once.

Still have questions?

Email us and we'll be happy to clarify any questions you have about our project, ME/CFS, Long COVID and patient-led research.