Reprinted from the original for IIMEC10 with kind permission of Invest in ME.
10 Years of Biomedical Research – Invest in ME
by Dr Leonard A Jason and Zachary Siegel,
CENTER FOR COMMUNITY RESEARCH, DEPAUL UNIVERSITY, CHICAGO, USA.
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.
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.
at IIME Conference
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
CENTER FOR COMMUNITY RESEARCH, DEPAUL UNIVERSITY, CHICAGO, USA.
Director of DePaul University’s Centre for Community Research, Dr. Leonard Jason and his Myalgic Encephalomyelitis & Chronic Fatigue Syndrome Research Team have worked to define the scope and impact of ME & CFS worldwide.
Dr. Jason is Vice President of the International Association for CFS/ME and has been a key driver of CFS research since 1991. He is uniquely positioned to support collaboration between ME & CFS researchers, patients, and government decision makers.
Dr. Jason’s studies have shown that the direct and indirect costs of ME & CFS amount to $20 billion in the U.S. each year, and that more than 1 million Americans suffer from ME & CFS. He is currently undertaking a study of mortality in ME and CFS.
Dr. Jason presented at the Invest in ME Conference in 2008 and 2010. His articles have been published in the Journal of Invest in ME, and he wrote the foreword to the book Lost Voices. Lastly, but by no means least, he and his team braved the Chilli M.E. Challenge to help raise awareness and funds for biomedical ME research. Grateful thanks to Leonard Jason, Zachary Siegal and colleagues from the team at Let’s Do It for ME!
To help fund education & training of doctors & healthcare professionals –
May 2016 Update: 10 Year Anniversary for Invest in ME – Sign Online Group Card
Ten Reasons to Celebrate 10 Years of Invest in ME
More about the charity’s projects & donate.
Sponsorship Opportunities for Invest in ME Biomedical Research Conference
I’ve had an illness for the past 18yrs. At 23yrs old, all I did was wake up one day. February 1998 a new me started where I thought it was ending, more than I count.
Just this past December 2016, I finally got a name to go with this life snatching disease. Myalgia Encephalomyelitis/Chronic Fatigue Syndrome. The first thing people think when they hear CFS, is just the F. I’m now the 4th generation of M.E. and the first to accurately get a proper diagnosis.
I’ve been housebound; mostly bedridden.
My true mission; giving other’s a voice who haven’t been or won’t be heard. The emotional abuse from doctors, hospitals, etc. It has to stop!
I’m a very happy person inside, I’ve come very close to taking my life more than I can count. My mind thinking, “Will this be better for my husband, three children, my family”?
The answer, obviously was NO! They loved me when all I felt like was a burden. I couldn’t do for myself years at a time. Then out of nowhere, I’d be able to get out, take a shower, thought I was better; even worse, my family thought I was better. They’d get their hopes up, just to be disappointed time and time again.
This isn’t a mental disorder! Although, If you have a heart, about anyone would lose their mind when about every part of ‘what keeps your body running properly’ starts making you so sick, but nobody can tell you why. It’s funny how so many seem to suddenly have a degree in the medical field telling you everything they haven’t a clue what they’re talking about. I’m not sure which is worse, the ones who actually have the medical degree and look at you like you’re full of ..? Or, the people around you thinking they have their medical degree and are full of ..!
It’s very easy to try and tell somebody what THEY would do, until you’re the one that has no idea.
We’re finally getting answers!
My goal- A force to be reckon with; a tornado that twisted through ME to not only get answers, but help others who doesn’t have the support system, family, friends. I couldn’t imagine going through this alone!
Not only do I want to tell them I “get it”, but the three words that can make such a difference in M.E.
I BELIEVE YOU!
I not only believe you, I know and feel what you’re dealing with.
I’m one person, in a little town.
Another goal- To teach healthy, sick, young, old or in between;
ONE PERSON CAN MAKE A DIFFERENCE!
I know God will put me on the right path, with the right people, guide ME as I fight (I’m not going to use the word victim, we are victors of) Myalgia Encephalomyelitis! ✌️✝
Tracy
Indiana
I love you & I BELIEVE YOU!
Richard Cranium that is… lol