An interview with Rik Carlson – part of a series highlighting the accomplishments of ME/CFS Fair Name Implementation Committee (FNIC) members.
(Note: Rik Carlson should not be confused with ProHealth Founder Rich Carson. To read about Rik's latest project - the CFIDS documentary film "Invisible" - click here.)
Vermonter Rik Carlson grew up with the ideals of the sixties and busted his chops in the harsh reality of the small business world. In 1995 he came down with the flu, worked through it, and then was hit by ME/CFS, an illness whose severity he could hardly have imagined. Two years later his business was gone, he was on disability, and he had founded the Vermont CFIDS Association. In 2005, after years of effort, he published an autobiography - We're Not in Kansas Anymore. In this interview, Rik talks about his experiences with ME/CFS, his monumental fights with the insurance industry, the support/advocacy group he founded, and more.
Rik’s Personal Story
Q: Stress and CFS is a touchy subject. On the one hand you seemed to thrive on the stress that comes with running a small business, writing "I’d have phone lines backed up and people waiting to see me, and with each person I was up to speed in a heartbeat and ready for more. I loved it! I was a player! I always wanted more." Your last month of work was your best ever – but you also wrote that "I ran myself ragged and felt it."
On New Years day you got sick, worked through it as you usually did; but a week after a good friend unexpectedly died it felt like you were hit, as you put it, “with a sledgehammer,” and like “an anvil sat on my chest.” You’ve talked to a lot of ME/CFS patients. There is some research evidence suggesting that some sort of stress may somehow trigger ME/CFS. Do you hear this kind of story from the ME/CFS patients you’ve talked to?
Rik: As a note, people with CFIDS are always trying to describe it. It’s such an intense and bizarre disease that explanation is constantly warranted. While I talked about the anvil on my chest, or my body being made of lead, the woman who was bitten by the dog was being "crushed by an elephant," and one of my favorites (if you can have a favorite) was the woman who wrote me about "her head being stuck in a bottle of glue."
All the time - the type A personality and a trigger. Divorce, bankruptcy, car accidents, just last week we met someone whose trigger was a severe dog bite; but it’s not always so intensely dramatic. Laura Hillenbrand [author of Seabiscuit] in her New Yorker article about CFIDS describes riding in a car and almost hitting a deer, an event more startling than severe.
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Q: You’ve seen quite a few doctors. Have they come to an agreement on what happened to you? Do they think it was a virus? If so, do they think they know which one?
Rik: Ironically, my first physician had it right when he called it a post-viral syndrome. I asked if we should test for Epstein Barr and he said that even if they did, there was nothing to do, so why bother? Ooops. Then he left the medical practice and I began the search for primary care.
I was told that I fabricated it, and that it was depression (repeatedly), but then got some very good insight from an ND (Naturopathic Doctor), when he found non active natural killer cells and high titers for HHV-6. I soon understood the need for antioxidants and minerals to, at the very least, keep my body from getting something else. Sound pharmaceutical grade nutritional supplements are essential. I did find an understanding MD and added the "Meyers Cocktail" to my protocol. [An intravenous vitamin and mineral protocol developed in the 1970s by the late John Myers, MD, at Johns Hopkins.] He retired and I continue this treatment with the physician who bought his practice. She’s terrific and we’re back to Epstein Barr.
Recently I saw a cardiologist - and being in the presence of a new physician I was afraid to say the words (CFS). Many of us know what it’s like to be filling out a new-patient form, and when we get to the part about Chronic Fatigue Syndrome, seeing the eyes roll at the other end. Nobody ever said it would be easy and nobody ever said it would be fair.
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Q: You stated that something of a turning point in your health occurred when you accepted that CFS had basically won: "After 15 months I accepted the illness and threw in the towel; that was the day I started to heal. It was in defiance of human nature, of my own nature, and a terribly humbling moment. I remember like it was yesterday. I gave in to it. I lost." What did accepting CFS do for you?
Rik: It allowed me to accept the long term severity of this hideous disease and to make recovery a full time job and the whole of my object.
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Q: You provide several almost blow-by-blow encounters with the insurance industry doctors or other personnel. I’ve never seen the ugly underbelly of the insurance industry so vividly portrayed. It’s a dark side of the medical experience, yet it’s one that ME/CFS patients need to negotiate as well as they can. As difficult as your case was, you negotiated it quite well. What steps do you recommend that ME/CFS patient take to enhance their chances with insurance companies?
Maintain a diary.
Secure a trusted advocate.
Establish a relationship with a trusted physician.
Keep a paper trail.
Beware of physicians who are in cahoots with the insurance companies. Some choose business over healing.
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Q: You had an interesting experience with cribbage. You said "Early on…I was obviously retarded. I struggled like a bastard with the rules and with adding the numbers. It was like weight training for my brain." Over time, however, it seemed to work - as you go on to state "It was indeed physical training for my brain and it worked. My mental clarity improved." Do you continue to find this kind of activity to be helpful?
Rik: It’s amazing how mathematical skills become remedial. I struggle with simple arithmetic. How many with CFS lose control of their checkbook? Lately my course of study has been with computer programs, but once the snow flies, the cribbage board will resurface. Just imagining the combinations of 15 boggles my brain.
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Q: Are there any treatments you want to pass on that have been particularly effective for you?
Rik: I had one very effective treatment with acupuncture, but only one. Also a very positive experience with hypnosis. Bottom line, however, is that I hang my hat on sound pharmaceutical grade nutritional supplements in conjunction with diet and life style adjustments. I seek rhythm to my daily activities. I take advantage of the ‘windows’, and do my best to not cross that ‘invisible line’. CFIDS people know what I’m talking about.
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Q: You described several small events that upset you terribly. I’ve noticed since I’ve got ME/CFS that I’m more likely to be bothered by small incidents and that if I do blow up it takes me longer to recover. I was intrigued reading old accounts of myalgic encephalomyelitis to hear ME patients report that a new kind of ‘nervous tension’ pervaded their lives. Does this ring true with you? Are you more on edge since getting ME/CFS?
Rik: In the early days, I was just so God awful sick that I was angry. In traffic, I was angry, but especially when someone did me wrong, I’d lose it.
Once at a pharmacy I had my arms full of stuff and was in line at the register, when the clerk closed the line and told everyone to go to another register at the back of the store. I flipped, mostly because I didn’t have it in me to walk that distance and start all over again. I dropped everything in my arms, used foul language, left the store and came home with nothing. I was so embarrassed, and it hurt, and my sickness exacerbated rapidly. It was no fun.
On another occasion I was being ripped off for close to $300 at a car dealer and made a scene in the waiting room, warning the service customers to beware. I drew a crowd. Again, I worsened dramatically. I have since learned to control my anger.
I have learned to recognize when the cards are against me and when to walk away. I know when the vibes aren’t in my favor at the grocery store and I just leave and work it out later. Like I said, I don’t know if I’m getting better or getting better at living with it.
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Q: You had a very alarming incident at the end of a long winter when you couldn’t sit up and your blood pressure skyrocketed. A trip to the hospital revealed nothing dire and a cardiologist diagnosed a high heart rate due to inactivity. You got a pedometer, some (very small) hand weights and started a small exercise program. How has this gone for you? Did it clear up this problem?
Rik: The rapid heart beat has happened again, and now I’m on medication and I own a blood pressure cuff. It’s easy for a physician to prescribe exercise but many of them don’t understand how just a little too much can worsen us dramatically. It’s being stuck between a rock and a hard place.
I recently hosted an art show that was literally years in development, and while I hired others to do most of the work, and I prioritized every activity, in the end, I still tried to act like a well person and it took me down, quite dramatically, and it was frightening. Nobody ever said it would be easy. I struggle for balance.
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Q: At the end of your book you talk about the silver linings CFS can bring. You note that CFS made you slow down and that has led you to get in touch with experiences you might not otherwise have had. In her book Encounters with the Invisible, Dorothy Wall talks about how important the simple beauty of things became for her. I’m not in any way trying to turn CFS into a positive experience but in a few ways it sounds like this struggle has perhaps turned you in some directions you might not otherwise have taken, and some of them have been positive?
Rik: Dr. Andrew Weil, MD, wrote seven strategies for successful patients. The seventh one was "Find the silver lining. Many see illness as a gift because it forces change for the better." When I first read that I was fully embroiled in the malaise of disease and it infuriated me. There was nothing I could find that could even remotely be seen as a gift. How could he be so stupid?
As we know, CFIDS is a long term disease. I often say that I don’t know if I’m getting better, or if I’m getting better at living with it. It’s actually a little of both. I am at a stage now where I have made the major adjustments and my days are not filled with profound debilitation. For that I am grateful.
CFIDS has allowed me to be closer to my family and that’s as it should be. ‘Recovery’ is a matter of priorities and family is #1. I have readjusted my skill sets to focus on computer generated art and that has become very rewarding, so what I once found unimaginable I now find to be true. Dr. Weil was right, but my anger was justified.
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Q: You ended your book the same way Dorothy Wall did hers; eyeing a trip for the first time in a long time. In your case it was to be to an island. You’d made some real progress but your health still couldn’t be described as anything other than awful. Did you make the trip? Have you made any more in the four years since the book was published? How are you doing now?
Rik: We did, and it was lovely. We went to Hornby Island in British Columbia and it was beautiful and remote and our friends understood my limitations and nurtured me. Other than the travel time, we relaxed on a bluff overlooking the ocean where the eagles soared. It was magnificent.
I did better than I expected. However, if I never travel in an airplane again, that would be OK too. Missed flights and time delays took their toll. Now, I do my best to stay at home. I live in a healing environment. I’m one with my cats and heat with wood. I have setbacks, and fear of relapse looms as a companion. Again, I seek rhythm. I consciously try not to get upset over things I don’t control.
ME/CFS in Vermont
Q: In your 2006 letter to the CFSAC [“A Report on the Status of CFS in Vermont”] you talk about how you’ve seen people with CFS “just disappear.” It often starts with a string of fruitless, sometimes humiliating physician visits. The next step is usually the loss of job, career and financial security; along the way relationships often break under the strain; there’s the fall through society’s frayed safety net; and finally a disappearance. For those who are not fortunate to have family or some other support they can fall back on, this disease, as difficult as it already is, can get incredibly grim. Do you hear this kind of story much?
Rik: Every day, and it breaks my heart.
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Q: After two years of providing little more than sympathy, your primary doctor finally decided to tell you that your insurance plan covered a local ‘CFS expert’. That, of course, got you quite excited. But not only was he not taking new patients; he wouldn’t even give you a referral! The last thing he wanted was another CFS patient – they were too difficult and just took up too much time. What is the situation in Vermont with regard to CFS-knowledgeable physicians? Has it gotten any better over the past 10 years?
Rik: No. Details of what’s happening in Vermont will be made clear in our soon-to-be-released film [discussed later].
The Vermont CFIDS Association
Q: You started the Vermont CFIDS Association in 1996. How did this come about? What did you want to accomplish?
Rik: I attended a support group meeting for Fibromyalgia, and learned of a previous group for CFIDS. They had stopped meeting, so with a few phone calls I established a meeting place in the Congregational Church in Essex Junction and then put a phone call in to the television station. Barbara took me to the first meeting and when we arrived, there were 30 people! At that time, I just wanted to know how many others were sick like this, and what they were doing about it. I couldn’t see beyond how very sick I was. The reward was to learn I wasn’t alone.
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Q: The Vermont CFIDS Association closed in 2000. It seemed like once the group ran out of doctors to speak before it, or potential cures to explore, the interest faded. But it seems to be up and running now. What has happened with the VCFSA and what is its status now?
Rik: We meet again once a month in a new location in a much less formal manner, but with the emphasis on support. Our secretary, Lainey Rappaport, is a tireless promoter and with a core group we always find new people. She maintains small public service ads, and through word of mouth we find each other. Our last May 12th event was to a full house and one member commented that with everyone all dressed up she felt like she was in church. Amen.
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Q: Organizations need at least some money to run on. Does the VCFSA take much money to run? What are your major expenses? Where do you get your funds from?
Rik: We are an all volunteer group and no longer do fundraising or maintain a checking account. We are always in search of a healthy person who would want to restore our nonprofit status.
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Q: In order to have an organization you have to have members and in order to get those you have to advertise yourself in some way. How do you find your members?
Rik: We operate through the web site (http://www.vtcfids.org), public service ads, and word of mouth. New people find us all the time.
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Q: We keep hearing about how poorly the local support groups are doing across the country. What’s the situation with local support groups in Vermont? Are there any? How have they fared over the past 10 years?
Rik: With people who are desperately ill and whose personal lives are in distress, the additional challenge of an active organization is usually too much to handle. We are in the northern part of Vermont and the most populated part of the state (more people than cows). Years ago there were a couple of groups in southern Vermont but I hear nothing from them anymore. Activity is limited to individual efforts.
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Q: Looking at your biography I was struck by the thought that you were almost a group leader waiting to happen. As a small businessman you’re used to starting up enterprises. You obviously have a flair for advertising and you’re outgoing and comfortable with the public. Do you think that your background helped you in your support/advocacy group work?
Rik: Yes, but what has been more important is my gender. The way women are treated in the medical community as well as in the business world is abhorrent.
Q: In 2006, after years of work the VCFSA got the Vermont legislature to pass a bill to provide money to educate Vermont physicians about CFS using the New Jersey Consensus Manual on CFS Diagnosis and Management. How did this project evolve?
Rik: We actually did this twice. The first time we were trapped behind an outdated CDC definition and a medical establishment that thought we didn’t exist. The second time I started by meeting with a single legislator, then put him together with our group and Dr. Friedman and the Consensus Manual. He arranged for testimony before a House committee and through an e-mail network we solicited the support of other legislators. We got it passed as part of the Department of Health budget. [Note: Kenneth J. Friedman, PhD, is an ME/CFS researcher, advocate, and co-author of the Consensus Manual. For more information see Cort Johnson’s recent interview with Dr. Friedman.]
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Q: You got nine representatives to sign onto this bill. What did this entail? Was it a matter of CFS patients and/or supporters meeting legislator after legislator until you got enough of them? How receptive were the legislators overall to this proposal?
Rik: Be it known that the most powerful political document is the hand written letter from a constituent to a legislator. E-mail, while convenient, runs a distant second. A true politician thrives on personal contact and our support was genuine.
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Q: You used a CFS Treatment Manual that was produced by the New Jersey Department of Health in association with the New Jersey CFS Association as the basis for your packet. Other than using their Manual, did you interact with the NJCFSA in any way?
Rik: Our common denominator is Dr. Ken Friedman. We share support with New Jersey on our web pages and are extremely grateful for their Consensus Manual as a foundation tool. Without either Dr. Friedman or the Manual, we would be lost.
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Q: What is the status of the Manual now in Vermont? Has the state done what it said it would - had it distributed it to the physicians in the state?
Rik: Half. They built a web page for us and have made the link available to physicians [scroll to bottom]. They will print copies for residents by request and also offer it as a .pdf file. We had the disability chapter rewritten by a Vermont attorney with the agreement that they would put Vermont on the cover, but that has failed to materialize. We do, however, maintain a courteous relationship.
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Q: You had the backing of the Vermont Department of Health five years ago and passed similar legislation. But when the Dept. looked to the CDC for their [information] regarding treatment it didn’t extend much further than assessing the patient for psychiatric disorders. Now the CDC has an updated website, a training program designed to educate primary care physicians, one of the program’s trainers, Dr. Friedman, played a big role in your effort, you have a Consensus Manual...Is it easier for advocacy groups to be effective now?
Rik: Yes and No. While we have support from the Department of Health, we have yet to establish any significant recognition from the main stream medical community. To really be of help to anyone with CFIDS in Vermont, that’s what we need.
We need CFIDS to be taught in medical schools,
We need CFIDS brought to the hospitals in educational training programs
And we need the respect and attention deserving of a debilitating long term disease.
People with CFIDS in Vermont are dismissed. Many struggle to find understanding and support within the traditional medical community and repeatedly come up empty. Doctors need to be taught. Recovery programs need to be developed.
I hear stories of misdiagnoses and outright ridicule with regularity, events that fracture spirits and destroy families, and it breaks my heart. When we change that, we’ll start to understand success.
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Q: What does a support group need to carry something like this through? Is there any reason you can see that this type of effort shouldn’t work in other states?
Rik: Dr. Friedman and the New Jersey Association have been very generous with their time and with the Consensus Manual. It’s a matter of finding a supportive legislator and doing the same thing.
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Q: What advice can you give groups contemplating similar efforts? What would you have done differently? What did you do right?
Rik: The only way you won’t experience a modicum of success is if you quit. I’d have done nothing differently. Persistence is the key.
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Q: In 2003 it sounded like you had a couple of hours of work a day available to you. Being an advocate obviously has its energy costs. On the other hand you’re trying to make a difference with an issue that’s very important to you, and that in itself can be quite energizing. Have your advocacy efforts affected your overall health in any way?
Rik: Forming the support group was a selfish thing. All I wanted to do was get better. When you run out of doctors, the next step is to find others with the same problem and find out what they’re doing. Restoring my health is my full time job. I’ve learned and bettered myself as much or more from the group than any physician.
We were a temporary 501(c)3 - and when I learned how much work was required to be a full time nonprofit, I couldn’t do it and no one in the group had the strength or energy required, and it lapsed. True recovery insists that you know when to say no.
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Q: What’s next for the Vermont CFIDS Association? Are there any more initiatives planned?
Rik: We meet once a month and our last meeting was very good. We support each other, and that’s what it’s all about. Of course we also recognize May 12 Awareness Day.
Also I am working with a close friend and associate on producing a film called "Invisible in Vermont" - which is a compilation of interviews with some of our support group members as well as Dr. Friedman and medical professionals. The purpose of the film is to provide a tool so that someone with CFIDS can show it to a spouse or relative, or neighbor, employer, or physician. Our goal is to provide credibility. The longest journey begins with a single step.
* This article is reproduced with permission of the author, Cort Johnson, © 2007 Cort Johnson. Cort Johnson, a noted research reporter, is founder of the website Phoenix Rising: A Guide to ME/CFS (http://www.phoenix-cfs.org) and publisher of the bi-monthly Phoenix Rising Newsletter.