Dr Leonard A Jason and Zachary Siegel

Center for Community Research, DePaul University, Chicago, USA

10 Years of Biomedical Research - Invest in ME

10 years of Invest in ME’s dedication to advocate for a marginalized group and the determination to allocate funds in a neglected field needs to be acknowledged and applauded.

This organization has been working in the trenches of ME, and it has been a notable and significant contribution to the field.

Invest in ME has been able to increase awareness and disseminate knowledge to scientists, clinicians, and patients within the ME community. With limited resources, but unlimited creativity and imagination, these patients and their supporters have showed the world what can be done.
They are an inspiration for the world.

Stigma is still associated with too many patients with ME, and this might be partly due to our society’s infatuation with unlimited energy, stamina, and endurance, and in fact, these entities are more alluring than money. Patients with ME continue to encounter skepticism, and this is regrettable, as patients first endure a devastating illness and then they are further victimized by our society’s reaction to them. Far too many scientists and health care workers have been part of the problem, and this has to change. The status quo is not acceptable for patients with ME. Dr Leonard Jason

It’s only by us collectively being involved in action that the situation will change. And it has changed for many other illness groups, such as people with HIV/AIDS, who demonstrated that it is possible to bring about a sea change in the treatment and respect for people with this illness. To bring about this type change is going to involve not just the patients who have ME, but also their friends and family members who do not have this illness. The future of this field is in connecting the many patient and scientific groups into one larger body that is united for change. We welcome youth groups, civic organizations, and not-for-profits to get involved in one of the truly neglected areas needing structural changes in the way patients are treated and their availability to quality care.

In order to push forward, we need research that involves multidisciplinary efforts that will bring together scientists from different disciplines including virologists, epidemiologists, individuals who study the autonomic nervous system, genetics, computer science, immunology, and many other disciplines. This illness represents a great challenge to medicine, and one from which we will all learn the intricacies and systems of the human body.

In addition to the massive amounts of funding that are needed to better understand this complex illness, patients living in every country need the best that medicine can offer. The key to success is a team of health care providers working closely with patients, using services that meets all of their needs. I continue to believe that learning how to pace and stay within the energy envelope is the key to having a better quality of life. But we need much more basic research to find ways to cure this illness, and one day it will be possible, just as it has with other diseases that have had adequate funding for research. ME received considerable media attention over the last year, and we now need to use this momentum to bring about the changes that are so desperately needed. There is nothing as important for our field as seeing patients as true collaborators in service programs and research that focus on better understanding this illness, and their voices and vision need to play an instrumental role in setting the agenda for the future.

By Dr. Leonard A. Jason and Zachary A. Siegel