Marly Silverman - Teaching FM/ME/CFS Patients to Thrive, Not Just Survive

Marly Silverman is the founder and inspiring spirit of P.A.N.D.O.R.A. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy), a nonprofit in Florida that has grown in a few years to provide resources for FM and ME/CFS patients at the local, state and national levels.

"Built on hope,” P.A.N.D.O.R.A. (http://www.pandoranet.info) works to improve quality of life and empower individuals affected by these devastating, life-altering illnesses. As a measure of its dedication, this year the organization threw every resource it had into co-hosting the huge 2007 IACFS/ME conference in Ft. Lauderdale, including the thousands of volunteer hours needed to organize a special conference for patients.

Marly Silverman’s encounter with FM and ME/CFS began with a series of unfortunate events. In 1997, she was stung by an African bee while visiting Brazil as international financial advisor for a major U.S. bank, had an anaphylactic reaction, and became very ill. Shortly thereafter, she experienced an ongoing infection that she just couldn’t seem to shake. The final straw in the demise of her health was a hit and run car accident that literally crashed her system.

“That was it, I just couldn’t recoup. From there it was all downhill, and everyone kept saying ‘you have the flu,’” she recalls. “And I said, ‘I’ve had the flu now for one year and I’m not recouping, so something isn’t right with this picture.’”

Marly knew that something was terribly wrong when common daily activities suddenly became a nightmare. “I had to physically sit down on the floor because I couldn’t even stand when taking a shower, and the water would hurt me,” she recalls. Her uncle, who was a doctor in Brazil, quickly suggested that she could be suffering with CFS, a diagnosis confirmed by her primary physician, and one of FM by a rheumatologist when she returned to the U.S.

“It was overwhelming to have this diagnosis… but I was relieved that I had a diagnosis, even though it was one that I wouldn’t want to embrace right away… it was something that took a while to absorb,” she says.

Struggling to deal with her failing health, Marly was hit with another blow: unemployment. “After I was diagnosed with Chronic Fatigue Syndrome and Fibromyalgia, my life pretty much turned upside down because my employer did not have any desire whatsoever to accommodate some of the disabling components of these two illnesses,” she explains.

Left with no other choice, she filed for disability and spent the next 3-1/2 years fighting for her health.

It was during this time that Marly had her ‘aha moment.’ “There’s one thing that I did; I decided that I wasn’t going to be helpless. I decided that I wasn’t going to let this thing take over my life,” she says. “I really did not want to feel helpless. It’s one thing for you to be disabled because of the physical ailments of an illness, but it’s another thing for you to be completely helpless. And I just could not allow that to happen.”

A Need for Community-Level Support

In this spirit, Marly founded P.A.N.D.O.R.A. in 2002. Founded on hope, this organization provides local, state and nationwide resources for patients dealing with FM/ME/CFS and other related illnesses.

“I just realized that… there was a lack of certain things happening in my community. National organizations are wonderful and do such a great job, but sometimes their success doesn’t trickle down that fast to a local area, so here in Florida there was definitely a need for an organization like P.A.N.D.O.R.A., and we have filled a niche,” she says.

“Losing that part of (me) - that identity of being a business woman and a go-getter, traveling all over the world soliciting business clients, and obviously making a considerable amount of money - at first it was hard to deal with that,” Marly explains. “So I think on some level when I decided to become an advocate, I think that really was a lifesaver… to be able to feel that I’m worthy. All those components of my previous life, I sort of reinvented them and brought them into what I do right now, and that kept me sane.”

“I went through the same process as other patients: anger, denial, embracement, defiance, and acceptance. I cried for a long time,” Marly says. “So P.A.N.D.O.R.A. really came out of self-empowerment, and I think the desire to help myself… and that has led me to do something greater.”

Something greater to Marly meant addressing the major concerns of other patients struggling with these illnesses. Her firsthand knowledge allowed her to focus the priorities of the organization on advocacy, research, and quality of life issues.

“I wanted people to be able to thrive”

Perhaps one of the biggest obstacles for FM/ME/CFS patients is learning to cope with the startling contrast of their new day-to-day lives. Patients suffering from these illnesses are often overachievers used to leading busy, fulfilling lives - making their newfound disabling limitations more than a little distressing. “What happens is Fibromyalgia and ME/CFS patients pretty much have to reinvent themselves,” Marly says. “People need to find happiness and joy throughout their daily routine and the years ahead. I think that really makes a big difference.”

“I am not minimizing the seriousness of this illness and the level of disability that some of our friends in our community experience, and I’ve been there too. And more than I care to admit I have real bad days. Maybe not as long as some of them have, but I remember actually crawling to the bathroom, not being able to wash my own hair, that I couldn’t lift my head or my arms because I was so weak… I don’t always succeed in everything that I do, but I keep trying, and the more I try, then eventually I’ll hit the jackpot. This is really a message that I try to give to people,” Marly says.

"Quality of life is an issue all too often overlooked in the battle, but it is imperative to patients living with chronic illness.” This is why Marly made the issue a core aspect of P.A.N.D.O.R.A.’s efforts. “I didn’t want people just to be survivors, I wanted people to be able to thrive. To have a thriving family life, to have a thriving life as far as the day-to-day routine… to have some sort of a rock and a foundation that on a bad day, you embrace the bad day, but you know that tomorrow will be brighter,” she says.

“I can tell you right now that some of the young people I have seen… one of the things that I tell them is, don’t shut yourselves off from the world. You’ve got to learn how to be part of life, how to enjoy life, and it takes baby steps, but you’ve got to learn how to do these things so that it eventually becomes almost natural. The first thing people do when they are sick with a disabling chronic illness is they shut themselves off from the world, and they can’t do that,” she says.

A Vision of the ‘One Stop Shop’ for Patients

"I think I lend my voice to the ones who cannot get up and do what it takes within the advocacy movement,” she says. Marly saw the 8th IACFS (International Association of Chronic Fatigue Syndrome, now IACFS/ME) Conference in Ft. Lauderdale as a chance to add volume to that voice, and enlisted P.A.N.D.O.R.A. as a co-sponsor of the event. “By sponsoring that event, we created a huge awareness here in this part of the country… and helped train patient advocates,” she says. She believes these advocates will help create the critical mass necessary to make real change possible.

Seeking to take things to the next level, one of P.A.N.D.O.R.A.’s main projects at the moment is establishing a “one stop shop” for these illnesses - The Florida Neuroendocrineimmune Institute. The Institute will tackle such issues as physician training, with a state of the art research facility, and providing education to patients and their families. “There’s a whole component of social services that we want to incorporate within the institute...housing issues, meal distribution, home medical care and housekeeping assistance, and other disability issues,” says Marly.

She believes one major obstacle to progress can be removed now: the name. “The name (Chronic Fatigue Syndrome) carries a huge stigma, and I think the name has actually created a difficult hurdle in the development of science and treatment,” Marly explains. “If you put the word fatigue in there, everyone says, ‘I’m fatigued too.’ Well, it’s not the same, and fatigue is not an illness.”

The Name Change - "A Huge Advocacy Issue"

She also feels that the name is so important because it is part of a bigger issue. “The name change for me is a huge advocacy issue, not only because I know that it will affect millions of people, but also because it’s personal. Even for me, having P.A.N.D.O.R.A. behind me, who found this support and knowledge, I still am looked down on, discriminated against; and I am still questioned as to whether I really have a true illness,” she says.

“Sometimes I think, if I have all this protection and I still have to endure the lack of dignity… I can only imagine how someone else might recoup from such a personal blow. So this is why I think the name change is very important,” Marly says.

“It’s a tough issue, I think, for any one of us to really say that this (ME/CFS) is the best name possible, but what I am looking at is that with the name change efforts there is a consensus… that the name be changed from Chronic Fatigue Syndrome,” Marly explains.

"Although a new name like ME and its dual meaning can still be debated within our advocacy and scientific community, we need to persist, we need to make sure the name change is based in scientific research and that perhaps by adding ME to CFS, it wll speed up the process toward greater research funding that will guide us toward eventually eliminating Chronic Fatigue Syndrome as the official name for this illness...a name that even the current scientific research studies no longer are indicating is a fitting or a good name to describe this illness. I think the science that's coming up now is really going to drive the name change efforts.

“I am not immune to experiencing fear and frustration and lack of self-confidence in what I can do and what I cannot do. But I’m lucky. I’m lucky that I have wonderful family support, and great friends of all walks of life, who always cheer me up when I need that little extra boost,” Marly says. Enlisting a support group is a crucial component in dealing with these illnesses, in coping, and in thriving in your new life.

“(The illness) has actually allowed me to follow my bliss on many levels. The desire to be of service to others,” says Marly. “So all that anger that I experienced in the beginning, it turned into something positive. It got me to do what I needed to do to get going with P.A.N.D.O.R.A. On some level it’s just looking at the glass as half empty or half full.”

Eyes On the Prize

“Every little goal that I accomplish with P.A.N.D.O.R.A. is a big step for the next one, then to the next one and to the ones after. I am not afraid of thinking big,” says Marly. “I think you have to think big, I think you have to look at the pie in the sky, but at the same time, having ME/CFS, I also understand that I have to take baby steps, turtle steps, and that I can’t sometimes do everything that I really want to do.”

But what she does do means everything.