Hello. My name is Rich Carson, and welcome to ProHealth’s first online chat in a long, long time.
Q: Who is Rich Carson?
Rich: I am a Chronic Fatigue Syndrome patient, the founder of ProHealth, a volunteer CFS and Fibromyalgia fund raiser, and former support group leader. Presently I’m organizing the Campaign for a Fair Name - the effort to change the name ‘Chronic Fatigue Syndrome’ to one that does not trivialize this serious illness.
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Q: What symptoms did you first have when you became ill?
Rich: I had acute onset, with severe sore throat, night sweats, fever, fatigue, flu-like symptoms, and elevated antibodies to EBV and CMV. The underlying illness never went away.
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Q: I wonder about the "myalgic" part of the name ME, as in Myalgic Encephalopathy. A small percentage of people don't have pain at all, and many sufferers seem to have only minor pain. I already have good doctors and am being treated well, but I wonder if other general internists would dismiss me as not really having the disease since my pain is minimal.
Rich: That's a question I also had, because like you, muscle pain is not a problem for me. However, at the Name Change Advisory Board meeting in January, the researchers agreed that ‘myalgia’ or ‘myalgic’ was describing the general achiness people get when they have the flu - not the type of pain one would experience with FM or a muscle injury.
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Q: In terms of CFS, what treatment have you found to be most beneficial? I am currently taking vitamins & supplements.
Rich: Transfer factor been immensely helpful, as well as specific nutritional supplements, stress reduction, controlled exercise, adhering to a very healthy diet, and daily vegetable juicing. Mercury removal and detoxification was also very helpful, and is an ongoing process.
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Q: Which transfer factor did you use and how did you choose?
Rich: I take 5 or 6 different types of transfer factor, mostly because I'm not exactly sure what pathogens might be lurking and causing symptoms at any time. For example, researchers have found that CFS patients suffer from reactivation of many pathogens, including EBV, CMV, and Human Herpesvirus 6 (HHV-6) A and B. Consequently, I take transfer factor that is specific to all of those. I also take transfer factor that could be of interest to anybody looking at Chlamydia pneumoniae, the various mycoplasmas, Candida [yeast infection], and even Lyme disease. I cover all my bases.
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Q: Do you believe there is any connection between FM, CFS, and MS?
Rich: I have no doubt that there is a connection between FM and CFS. And researchers believe that in some cases MS and CFS share a common pathogenic initiator – HHV-6.
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Q: What do you think of the theory of methylation cycle problems in CFS?
Rich: This is a fabulous theory,* and there is much research that supports it. Researchers and patients have been buzzing about this topic for quite some time on ProHealth's CFS and FM bulletin boards, and patients are reporting very beneficial results. ProHealth is in the process of formulating a product that should be a perfect fit for addressing this situation. (*What Richard Van Konynenburg, PhD, described as “the glutathione depletion-methylation cycle block hypothesis for the pathogenesis of CFS” at the IACFS conference in January.)
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Q: Did you and do you have sleep issues? I notice that this is a big problem for most of us - getting into the deep sleep stage.
Rich: Sleep issues are huge when it comes to CFS and FM, and I've had more than my fair share. In fact, I would be tempted to say that if somebody doesn't have sleep issues they probably don't have CFS or FM. Sleep issues range from difficulty falling asleep to inappropriate early morning awakening, hypersomnia, and delayed sleep phase disorder. I have a supplement regimen that I use nightly that works like a charm.
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Q: You mentioned a night time regimen to help sleep. Could you elaborate a little?
Rich: My nighttime regimen consists of taking the following supplements about one hour before bed: valerian; lemon balm; GABA; melatonin; ziziphus; and my all-time favorite for sleep, ZMA. I like ZMA because I believe it strengthens my body's foundation by providing two nutrients that are of interest to CFS patients: a very bioavailable form of magnesium - almost always low in CFS patients - and zinc, the most important mineral for immune function.
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Q: Many patients stay away from exercise because of the pain and fatigue. Do you find that some form of mild exercise helps with these symptoms?
Rich: Exercise is by far the most dangerous yet potentially most helpful therapy available to most patients. If you over-exercise or exercise when your symptoms are too severe, you'll relapse. Not exercising at all is guaranteed to contribute to a worsening of your symptoms over the long term. Unfortunately this is a long-term disease, so you need to devise an exercise program that works for you.
First, think of exercise as movement therapy, and not necessarily vigorous activities such as running, bicycling, weights, sports, or even walking. Our heart rate is the perfect guide to exercising appropriately without overdoing it - if your heart rate is too high, you will relapse. I use a heart rate monitor with an audible alarm to warn me if I'm about ready to overdo it. A heart rate monitor is inexpensive and is the perfect "invisible coach.”
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Q: How do you feel about use of alternative therapies such as meditation, yoga, relaxation breathing, acupuncture?
Rich: Hi Sharon. First let me thank you for the brilliant work you do on this bulletin board. The same is true for Carlene, Shirl, and Mikie, our other dedicated volunteer bulletin board moderators. Meditation, yoga, massage therapy, hydrotherapy, acupuncture can all be extremely helpful in any self-treatment plan. And importantly, keeping up to date on CFS and FM research and treatment strategies is empowering and a great psychological benefit.
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Q: Rich, have you been approached about making a documentary about your journey with CFS?
Rich: I would only be interested in making a documentary if the thrust of the film was about the pain, suffering, and discrimination that all patients face on a daily basis. In other words, the story shouldn't be about me, it should be about the disease that has taken so much away from all of us.
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Q: What is the status on the name change? What progress are we making? What needs to be done?
Rich: The name change effort, which we call "Campaign for a Fair Name," is the most important project on my long list of things to do.
Phase 1 of the campaign involved asking patients what they thought about the present name. They overwhelmingly expressed a desire for a name that does not discriminate by labeling the disease ‘fatigue'. This phase of the campaign concluded with the formation of a group of world-class CFS researchers, who met to advise patients on an appropriate new name.
These researchers - whose combined CFS research exceeds 150 years - were officially called the Name Change Advisory Board, though patients refer to them as the CFS "Dream Team." The board met in person in Florida in mid-January to debate whether CFS should be changed, and if so what name should replace it.
We are presently in Phase 2 of the Campaign for a Fair Name, which is a period of education and familiarization with the board-recommended name, ME-CFS. As part of that, we’ll soon announce the members of another "Dream Team" – this one a committee of respected CFS patients who are founders and directors of major support groups, authors of top-selling books on CFS, well-known advocates who are considered thought leaders in the CFS movement, and several leading CFS clinicians.
Incidentally, this committee will be called the New Name Implementation Committee, or NNIC.
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Q: Thank you, Rich, for all the hard work you and your team have done. What is the best way for Individuals to get involved? What can we do to build awareness in our own community?
Rich: One way to make a difference is to get involved in the CFS Name Change effort. Another great way is to become a support group leader and work with CFS and FM patients to help make their lives better. I am going to be announcing the members of the NNIC in the next several weeks. As you will see, these patient advocates and CFS researchers represent the most influential and respected members of the CFS community.
Hopefully you and others will get involved in the campaign by starting to use the new name, 'ME-CFS' instead of ‘Chronic Fatigue Syndrome.’ If everybody does this, the name will change almost overnight. The campaign’s success will depend on you.
Now in closing, I want to thank you all for this opportunity to chat with you. For me, working with patients is a privilege and is in fact a major part of my own therapy. Without ProHealth I wouldn't have the vehicle to do this, and an important part of my life would disappear. Changing the name Chronic Fatigue Syndrome is by far the most important endeavor I've ever undertaken. Strangely, however, it is also the goal that I feel most confident of achieving.
And thank you very much for the heartwarming support you have so generously expressed. Working together, patients will succeed in righting wrongs that have caused us anguish.