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

  [ 425 votes ]   [ 6 Comments ]
By Kristy Katzmann • www.ProHealth.com • October 23, 2007


A profile of Marly Silverman – part of a series highlighting the accomplishments of ME/CFS Fair Name Implementation Committee (FNIC) members

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.




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Article Comments Post a Comment

Marly's experience
Posted by: Silvercrusader
Oct 24, 2007
To Marly, Kristy or the automatic response E-mail------ Let me start by saying, your efforts are truly appreciated. HELP, of any kind, is great. With that, my true feelings are, you haven't a clue. I intuitively did everything you suggested because AA gave me back life, 25 years ago. Every day since then, has been a gift. I always planned to handle whatever life threw at me, as long as it wasn't Alzheimer's. My Mother began her 20 year death, at 57 years old. Mercy did not find her until she was 77 years old. I planned to commit suicide if certain people indicated I needed to be checked for Alzheimer's. One of the chosen died from cancer, the other moved out of State. I guess it's my call now. I live in Kansas City, Missouri.that should speak volumes. 1985 I had a manager tell me I looked like I was going to faint on many ocassions. I would tell her that's how I felt, but was afraid to take sick time. She understood. I applied at a new Psych/CD facility and was hired. The next four years were "appearances" and cover-ups. Following 7 weeks recuperation from a Hysterectomy,I was fired. When my severance was about to run out I applied with a Company out of Boston to do EAP for Union Pacific RR. I quickly became the "golden girl", convincing more people for the RR to enter CD/Psych treatment than any other EAP's with UPRR. I worked four States, so all of this was done by phone. Only KC Aftercare was done in person. I would lie on my floor at home with the phone, building that great image. When I was going to have to go into a local office at 8:00AM, I knew I was doomed. I was fired for coming in late a few months later. I had told my new boss I would develop flu-like symptoms if I had to come in early. I didn't know why that was true, but it was. I was fired for insubordination. Confused, depressed, I applied for unemployment. Maybe I was crazy. I had gone to my female Dr. before starting this job and took a list of the symptoms I was having. She started laughing and said,"Do you want to pick one, or shall I cancel my day?". I was so hurt and angry. She's also the Dr. that made me write out a list before referring me for an MRI because I wanted to know what caused my stroke, leaving my left side paralyzed when I was 16 years old.I eventually got everything back, but my left hand. I still had the delusion that Doctors knew what they were doing. My girlfriend would make fun of me. My hands would fall to my sides, riding in her SUV. I didn't have the strength to put them back in my lap. She told me to quit acting like a spook. She would have to tell me my hands had been hanging at my sides. After 16 years living together, we broke up. No job, no relationship, no friends---she didn't trust Gay Women--as alone as one can get,I bought a used MAC and began to research what could be wrong with me. I was now a medical indigent.I asked the new Doctor,where the poor without insurance go, "How is your ego?". I had to provide written justification for every test I wanted. First I ruled out MS, because my aunt has MS. I remembered a Nurse Practitioner telling me in 1995, that I looked like I had Epstein Barr. No one would ever test me for it, because the four Midwest Doctors I asked, said it was a waste basket term. So, I looked it up. Many, many tests later, I took my file to a Disability Attorney. She said she'd never won a Chronic Fatigue/Fibromyalgia case before, but she's never seen one as thorough as mine. She sent me to a Psychologist who diagnosed me with secondary depression to the other illnesses. It took me a year to build a case on debilitating illnesses that had caused me more isolation,pain,rejection and shame than anything I'd ever experienced. Since I didn't believe the Doctors and Employers were all wrong until 2000, I had crawled through life, head high for prying eyes, since 1985. The Attorney took my file to the first Law Judge that came through town. I won. More importantly, I WAS BELIEVED!!!! Even now my Dad and brother think I'm lazy on well-fare. I live alone with my little dog , little money, SOBRIETY and a big dose of gratitude for inheriting my Mother's tenacity. Marly, you'll never know how lucky you have been. You have family, friends, Doctors who have believed you. I believed in myself. Sincerely, Lynn Souther
Reply Reply

Marly and Lynn's experiences
Posted by: Kaeirdwyn
Oct 31, 2007
I have to agree with Lynn that Marly has been very lucky to have the support she has. I applied for disability, got a lawyer after being denied, and even though I had doctors I went to and a doctor saying these were my dianoses(I have about ten of them) still I was denied disability four times and my lawyer dropped me. I did not work long enough to get social security. I was applying for SSI. My husband makes just over the limit. However, more than anything else, I didn't want money, I wanted them to acknowledge that I had a real illness. That I wasn't making it up. The paperwork I received said that because I had seen a psychiatrist off and on I was not reliable and because my children had medical problems that I was probably just overwhelmed. Even my own husband says I need to get out there and get a job now that I have lost every avenue of receiving a disability verdict. I have heard there is a way of getting declared disabled by the state, however I have no idea how to find out this information, and what is more, I don't have any energy. I am so surprised when Marly talks about how she is happy she isn't feeling worthless because she has gotten P.A.N.D.O.R.A. off the ground and done so much, but what I know is that I couldn't have ever done it. I can't clean my house, I can't sometimes get out of bed. I am glad she is there advocating for the rest of us, don't get me wrong. I just think she is one of the lucky ones. She may have bad days, but imagine every day as bad or worse. I wangt to be a good mom to my kids, so I have sacrificed cleaning my house, so that I can be with them in a meaningful manner every day. I have a lady from the county who comes in to help...for two hours a week. My son who is eleven picks up the slack, not because he wants to, but because my husband is just sure I am faking and won't lift a finger. When I say lift a finger, I mean it. He fixes the computers in the house, because it is his work and his hobby, once in a while he might mow the lawn, but we have a neighbor who does that for us most of the time. I want him to go to a support group for people who live with chronically ill people, but he won't hear of it. I know when he married me, he didn't sign up for being with a sick person all the time, and I sure didn't want to be "a sick person", however we don't get to choose everything that happens to us and so here we are, in a life neither of us dreamed of when we first got married seven years ago. Even my dad talked to his doctor, who doesn't believe in FM or CFS and so he says it is just a catch all and there really isn't anything wrong with me, or if there is, it isn't what I think it is. I have yet to find support of any kind. I have a counselor I see, but other than that, there is no one. Slowly, because I cannot do things in life like a normal person, I have isolated so that most of my friends have gone on with their lives, or gotten mad at me because I cannot do the things I used to and have left me friendless. There is a part of me that worries, because my husband every four months or so, gets upset and threatens divorce and to take the kids, because he knows without him, I really could not survive on my own right now. I am one of the ones who is not thriving and not really even surviving. I am slowly losing every bit of my life that I have come to know and love and there is nothing I can do to stop it. I am still struggling to do what needs to be done. I know I can't give up, but it still doesn't stop me from thinking about what could happen in the future. If I could work at any kind of job, I would be doing it already. I am waiting for a miracle, with no hope of one ever coming. So even though Marly was a nice pep talk, it did not really address the issues I am facing, but I don't know if anyone out there really can. Thanks for listening. Kristie Baker
Reply Reply

Marley's article is an insult to those of us who do it on our own
Posted by: PGWS
Oct 31, 2007
What a joke. Tell her to try coping with REAL ME/CFS and having absolutely no support system (family or other)and all the responsibility, of EVERYTHING ALL ON YOUR OWN. We are the ones to be heard. NO WONDER SHE HAS TIME & ENERGY TO SET UP WHAT EVER HER ONE OF A MILLION ORGANIZATIONS ARE. THE REAL SUFFERS STRUGGLE TO GET BETTER ALL BY THEM SELVES. GET REAL. POST REAL STORIES NOT FANTACY
Reply Reply

Hi!
Posted by: nilagold
Jul 28, 2010
All I hear is anger coming from those that don't have a support system. I don't either in family and friends.. Marly is very blessed in this department! So why are you giving her such a hard time.? The disease is bad enough! I learned alot from Marley and from you that are down or her for that reason. We can choose to feel so victimized and helpless or we can take charge of our own lives and support systems! I learned that I too, have been wallering in anger and resentment at times because my family doesn't even come to see me or do they want to talk about my illness.. Yet, It's up to me to build a support system of some kind. I've been ill with this for 42 years now. I've had moments in time when I felt better only to relaspe. However, I still believe that " ___STAYING___ IN POOR ME MODE" is self defeating. Did you notice I said," Staying".. There's a big difference. We all need to validate our feelings and cry, rage or whatever to get through some extremely Hard times DEALING WITH LIFE IN A SICK BODY. I'm just coming from a long lasting peace that has finally taken over my ego, my spirit and my soul. Not every minute of every day because I HURT SOMETIMES.. I've found that turning things over to God as I know him/her is the foundation to get me through. I've found that the YMCA is a great place to talk to people who are dealing with LIFE.( They give scholarships for people like us.. Each one of those people I talk to, has some Cross to bear. I've found that the local mental health system gives support to me, not because I'm nuts but because I need to GET SUPPORT GOING THROUGH ALL THESE hard times with a chronic illness. To all of you I say this, I've been there and done that, been there and been so sick I couldn't move,felt like I was dying and had unbeleiveable fear, my hair fell out and etc. All I got from the medical establishment was criticism or I was tagged a mental case!I'm talking in year 1967 .. HOW GRATEFUL I AM THAT I FINALLY HAVE A NAME TO MY ILLNESS AND THERE ARE DOCTORS, NURSES AND ADVOCATE GROUPS THESE DAYS.. Take charge in baby steps as Marley suggests. I think it is so brave of her to take up a cause that is probably very stressful at times, dealing with people who are sick . I wouldn't take on what she has in a million years. So I guess what I'm saying is let's all stick together with compassion for one another and love. MOST OF ALL, if one feels like a victim, then you stay stuck!!!. In the early days of my illness, I was a true victim because there wasn't any help, no name for my illness and I was alone with three little boys. I guess this taught me to take things one day at a time and stay open.Never give up and cry as much as you have too , to get to the other side. I'm a hero in my mind and that's a good way to think of yourself!! We are all winners doing all we can to survive and LEARN..There's a little book that I have that comes from Al-anon. I joined that group for awhile and soaked up all the wisdom I could. The book is called " Courage to Change".'That book has helped me more than anything. It wasn't easy to seek help either...still isn't. I have deep wounds from the past being treated like a mental case. Yet I choose to keep facing my fears. Marly has it right. We have to reinvent ourselves to OUR REALITY..WE HAVE A "NEW" REALITY. So don't think I didn't cry yesterday to get through the day and I'm a know it all. I just want all of us to be kind to each other. It starts with loving youself as you are today. Everyday, I wish you "HOPE" and if my arms where big enough to reach everyone of you, I'd hug you all, one by one. KEEP THE FAITH. There is truely new hope with the XMRV retro-virus research! IT IS GOING TO BE ALL RIGHT... JUST WATCH and trust whatever your higher power might be to get you there.
Reply Reply

 
Surviving ME/CFS
Posted by: GypsyJac
Jan 8, 2011
I totally agree with Nilagold on this one. I have suffered with ME/CFS for 18 years but after countless trips to the doctors being told "Well of course your run down, you've just had a baby" or Of course your tired you have 3 kids under 3yrs" or "of course you're washed out, youre a single mother of 3 kids of which 2 are disabled" I was eventually told "Oh I think you may have ME....but I can't do anything for you!!" In the last 18 yrs, I've had gastric flu 3x the measles, and 12stone of wood fall on my head resulting in 2 facial reconstructions. I had to deal with this and ME and 2 disabled kids and I just got on with it. I cried through the pain, I collapsed constantly but picked myself up again and literally crawled to wherever I needed to be. I went from a very organized outgoing party loving energetic whizz to a foggy brained, energyless, depressed mess....but what I never became was a victim!!!! I refused to let it beat me. My 1st husband was totally useless, put me down, told everyone I was lazy and frigid so first opportunity I had I got rid of him, it wasn't easy but I thought what are my options, stay with him and be made to feel even worse (he gave me no help anyway) or get rid of him so that it was one less stress in my life. I want to add that at this point I had NO OTHER FAMILY living near me...I was totally alone looking after me and my 3 kids. I had to fight for the rights of my disabled kids constantly. I live in the UK and our support system is totally rubbish. So, on getting rid of my husband I had to rebuild my life. and I did this by baby steps, I set myself small goals and I got myself into a routine of sorts. I praised myself and gave myself treats when I reached my goals. I know how hard it is to do that and I still have constant relapses but I now have an amazing supportive family. I met a man who is amazing in his support and my 3 kids are so supportive now they are grown. But I know I wouldn't have met my new Husband if I had stayed a depressed angry woman, he admires my determination and knows that some of the things I do will wipe me out for days but he supports me in doing it becasue he knows mentally I need to do it. I still feel angry about ME and I still have days when I cry but I let it out then get on with living. We do choose how we want to live, we may not chose to have a dibilitating illness, but we do chose how we deal with it. Nobody wants to be around a constantly depressed person, that's life and a human trait, so you have to snap yourself out of it and take charge. I know that some of us are alot more mentally stronger than others but you can't say that those of us that are able to be up and about are not as bad as you that can't because I know how ill I've been when I've battling through the worst times. I liken it to a soldier who is trained to ignore pain, I learned to ignore pain and tiredness while I was needed to be doing something....I collapsed on my own later. I really hope some of you who are struggling alone find the stength to live life. It's so easy to get in a rut. all the best xx

 


Thank you, Marly
Posted by: brightraven
Jan 8, 2011
Thank you for using your story (and your energy) to try to help others more severely afflicted who may not have as much support. It is so appreciated.
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