Leonard (Lenny) Jason, PhD, is Director of the Center for Community Research at DePaul University in Chicago. Recently Vice President of the International Association for Chronic Fatigue Syndrome (the IACFS/ME), and now a member of the federal CFS Advisory Committee (CFSAC), Dr. Jason has been a key driver of CFS research since 1991, and is uniquely positioned to support collaboration between CFS researchers, patients, and government decision makers.
In 1989 Leonard Jason, PhD, was a full-time professor of psychology at Depaul University and a successful researcher with a knack for obtaining research grants. Then his life took an unexpected turn when he came down with mononucleosis. As the weeks went by, Dr. Jason’s physical and mental exhaustion persisted to the point where he knew something was seriously wrong. “My functioning level was so low that some days I could only make a phone call for 5 minutes and that’s all the energy I had,” he recalls.
At that time, he left his job for a little over a year and traveled the country looking for answers, trying to understand what was happening to him and what he could do about it. “I immediately and actively sought out people’s opinions and I read lots of books,” he says. “I traveled to different locations and I worked very aggressively trying to figure out what was going on.” He came to accept that he was suffering from a condition known as Chronic Fatigue Syndrome (what he now refers to as ME/CFS).
Dr. Jason returned to his work at DePaul University in 1991, but he was still feeling the effects of ME/CFS. “I am one of the fortunate ones, because I previously had a very strong career and I had lots of grant money that was still coming in, so they wanted me back,” he explains. “If I wanted to work 1 hour a day or 2 hours a day, they were going to let me come back; so I had that encouragement and support that most people don’t get.”
An ‘Open Door’ For Research
Upon his return, Dr. Jason immediately started looking for a way to understand this perplexing illness. What he found shocked him: poorly done research studies, no case definition for ME/CFS, and inconsistent data. “I began reading research and saying to myself, ‘What a mess, where do we start?’” he says. “But I also realized that there were so many things worth working on and researching.” It was a researcher’s nightmare, but Dr. Jason saw an open door. “There was easily another decade of work to do, and I made the commitment to spend some of my academic career making a difference.”
Dr. Jason subsequently obtained several research grants pertaining to the scientific study and evaluation of ME/CFS. And his subsequent work, including a landmark study of prevalence (1995-1998), has been crucial in helping ME/CFS patients gain credibility and acknowledgment within the medical, research, and public communities. “At any one time we have about 10 different studies going on at my center, so we are really exploring lots of different areas and there’s always new stuff to look at,” says Jason.
Landmark Cost & Prevalence Studies
His studies have shown that the direct and indirect costs of ME/CFS amount to $20 billion in the U.S. each year, and more than 1 million people suffer from ME/CFS as opposed to the estimated 20,000 people originally reported by the CDC (Centers for Disease Control and Prevention). Dr. Jason realized that if he could prove the number of those affected by this illness was actually much larger than suggested, people would take notice, more research funding would be awarded, and progress with this mysterious illness would be made. He succeeded.
Having successfully proved that ME/CFS is a real illness affecting a large number of people (numbers that translate to 1 in every 200 women, for example), Dr. Jason saw another major obstacle: the name. The name Chronic Fatigue Syndrome trivializes the severity and scope of this illness of which severe, unrelenting and debilitating fatigue is just one aspect. He found that there was very little literature available documenting the effects of name attribution, and set out to prove what ME/CFS patients have said all along, the name really does matter.
Proof That the Name Affects Patient Treatment
From 1998 to 2000, Jason did a series of studies scientifically evaluating name attribution and its effect on patient treatment. His team gave medical residents case studies that presented people with the classic symptoms of ME/CFS, but labeled each with a different name: ME, Chronic Fatigue Syndrome, or Florence Nightingale Syndrome.
So, what’s in a name? As it turns out, a lot. The patients in the group with the most scientific sounding name (ME) received the best overall treatment and attention, while patients in the group with the least scientifically derived name (Florence Nightingale Syndrome) received the worst treatment.
Knowing that attribution really does matter still leaves the question of what to properly call this illness. The front-runner in name change proposals is ME/CFS. “ME/CFS is a compromise. It potentially unifies many different groups (involved in the cause),” says Dr. Jason. “We’ll never make progress if we have to pick a winner. It is more about compromise and creating a coalition.” He suggests stressing the acronym ME/CFS as a way to create more unity and empower patients with the option to use variations of the name as they see fit (two possibilities being Myalgic Encephalomyelitis and Myalgic Encephalopathy).
He is also focusing on developing ME/CFS subtypes in order to more accurately identify and treat this complex illness - and sees the goal as finding a name that meets the needs of as many different groups involved in the ME/CFS movement as possible, while still allowing continuity in the great work that has already been done on its behalf. “I see myself as trying to help develop a consensus,” says Dr. Jason. “I think I’m in a very good position to dialogue with lots of people, and because I am a community psychologist, I seem to have the ability to keep the channels of communication open.”
A Vision of Places “to Live and Heal”
As he continues to generate scientific data on behalf of ME/CFS, Lenny Jason has another vision. A vision with a little more heart and soul. For many ME/CFS patients, he says, the frustrating reality is that the healthcare system – not to mention our society – either fails to meet their needs or disregards them entirely. One of his core beliefs is that the ME/CFS patient community needs to create its own places of healing.
“If I had hundreds of millions of dollars…I would create communities for healing,” Dr. Jason says. “Places where people could go to live and heal. We need to break the isolation that those with this illness often experience, and the only group willing to do that is ourselves. We need to create refuge settings where we bring meaning back to our lives and show society what it is to heal,” he explains. “People dealing with major health crises have valuable lessons to teach society; we are agents of change.”
Going forward, Dr. Jason hopes to continue playing a bridging role in the ME/CFS movement. “I think one of the fortunate things that I have is credibility with the research community, and credibility with the patient organizations because I’ve tried to work with them - and I’ve also just been appointed to a group that’s going to monitor things in Washington, so among the federal group I also have a certain credibility,” he says.
He remains dedicated to the cause, and encourages other patients to do the same - to use their unique talents to find a niche within the ME/CFS movement. “Often…when people affected by this illness have gotten well enough, they want nothing to do with it; they just want their life back,” he says. “We need people willing to stay involved.”
And speaking for himself, he assures that the rewards are well worth the fight. “This has been a really fascinating area to work in for the past 15 years, and I feel very grateful that I’ve been able to make some contributions.”