Theresa Coe interviews Rich Carson, founder of the CFIDS and FM Health Resource, who has had CFIDS/(ME) since 1981. His company markets specifically targeted nutritional supplements, channeling up to half of its profits back into ME research, while also providing free weekly e-mail bulletins of the latest research and treatments to individuals on request.
We’re still struggling in the UK to convince medics that ME is not primarily a psychiatric illness. Do you face the same problems in the U.S.?
Yes. Unfortunately, chronic fatigue syndrome, as it’s called in the United States is a very, very poor name because of the trivial nature of the word fatigue. And it’s important to realize that this is a disease that often involves an over-activated immune system, abnormalities in muscles and cerebral white matter, a decrease in blood flow throughout the brain, abnormal EEG, MRI scans, nervous system dysfunction and numerous other organic abnormalities. My own advice is not to waste time trying to ‘convert’ your doctor if they’re unhelpful. Instead, try to find a doctor that has a significant number of patients with this disease, and who has a track record of treating it successfully with everything at his or her disposal: allopathic medical treatments, alternative treatments, and also compassion.
You obviously believe that nutrition plays a key role in treating ME. Can you tell us what convinced you of that?
I was lucky to find some herbs many years ago that helped me with my CFIDS, in particular LEM, an extract from the immature Shiitake mushroom. This product, and several others, convinced me that nutrition was a viable and empowering source for people with chronic fatigue syndrome to deal with this cruel disease. I think it’s important for patients to take a very good multivitamin, multimineral adequate malic acid for muscle pain and fatigue, alpha lipoic acid, acetyl L-carnitine, CoQ-10, magnesium glycinate, and Evening Primrose Oil [plus others too numerous to list here].
I understand that one of your ‘bestsellers’ is the much-hyped Enada NADH
That’s right. I find that taking three 5mg tablets twice a day on an empty stomach helps my energy levels enormously [this is triple the dose used in research studies – Ed]. In one study, over 80% of patients showed benefit from NADH supplementation at 18 months. However, the most important single aspect of controlling the symptoms I suffer is to remove stress in my life. The second is to get as much sleep as I possibly can (and for this I do use the drug Klonopin, as well as valerian/lemon balm, and melatonin). Meditation has also been important for me, as well as regular, (albeit very short) walks and of course, emotional support.
Tell us a bit about some of the research projects you have funded. Have any yielded promising results that could change the way medics view the condition?
Recently, we’ve been extensively funding and promoting interest in human herpes virus 6 (HHV6) as a cause of CFIDS, and also funded a study looking at possible antiviral compounds to combat this infection. At this time, we remain confident that HHV6 is involved as a major causative agent in over half of all cases of CFIDS and we believe that continued research will bear that out.
What advice would you give to people with ME who fear they might never improve?
I would remind them that there is an amazing amount of research going on all over the world, into immunology, virology and biotechnology. When looked at in a broader perspective, and in particular with some of the antiviral research that’s going on, one can clearly see that tremendous strides are being made in discovering the cause of this disease and in learning how to discover effective treatments. We will get there it is only a matter of time.
(NOTE: This interview recently appeared in “InterAction,” the newsletter for Action for M.E., a non-profit organization from the U.K. dedicated to those with CFIDS.)