Yesterday I began reading “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Redefining an Illness“. This was a report released in February 2015 by the Institute of Medicine which had been commissioned by the United States Government to examine the evidence base for ME/CFS. Merely getting through the report brief reduced me to hot tears and I’ve spent the past 24 hours wondering why.
One of many reasons might be that they were describing things I’ve had to figure out on my own in the midst of both medical misunderstanding and social isolation. So I began to wonder, how would I have told myself to pursue recovery given what I know today? Since my case has been unusually severe, I suspect that at least some of the advice that I’m about to give to my past self would be useful for many ME/CFS patients today.
- Diagnosis Don’t let it take two years! As soon as Lupus, Hepatitis A, B & C, thyroid cancer and other scary conditions had been ruled out, I would have advised you to take the Institute of Medicine’s wonderfully simplified diagnostic criteria and diagnostic algorithm flowchart to your doctor so that the diagnosis of Chronic Fatigue Syndrome could’ve been quickly confirmed. If only the IOM report had existed then…
- Effective Detox Following the alkalizing protocol prescribed by Dr. Robert O. Young provided you with a wonderful basis for future treatments to work. However, I wish I could have told you that the Optimum Health Clinic in London, which specializes in treating Chronic Fatigue Syndrome and Fibromyalgia, has determined that effective dietary changes typically produce improvements that can’t last without additional mind-body protocols. This is exactly what you experienced and at the time it was a crushing disappointment because you had assumed the dietary changes alone were going to get you all the way to complete recovery.
- Classical Acupuncture This was a lot gentler on your system than mainstream acupuncture. It provided the very important step of helping you build a stable energetic foundation for your healing. But once again, it was not enough to take you all the way.
- SHINE Protocol This is based on Dr. Jacob Teitelbaum’s research. After being forced to drop out of medical school thanks to ME/CFS, he eventually managed to recover and return to his education. I believe he ended up being the first to do clinical research on Chronic Fatigue Syndrome. SHINE stands for sleep, hormones, immunity, nutrition and exercise. In his study, most patients recovered from following the SHINE protocol but you fell into the category of “significant improvement”.
- Holtorf Medical Group Dr. Kent Holtorf was Medical Director of the nationwide Fibromyalgia and Fatigue Centers before founding his own practice. Your treatment at Holtorf Medical was based on Teitelbaum’s research and it took you further thanks to the blood tests and prescriptions which you hadn’t been able to do before.
- Brain State Conditioning a.k.a Brain Training This was a big gamble that paid off well for you. It seemed to bring all the results you had previously achieved to a higher level. For example, your sleep medications began to work.
- Spiritual Therapy (For want of a better term.) The series of sessions you had with Maureen J. Smith, which included past-life regression, were unexpectedly helpful in many ways. I imagine this would not be for everybody. I would only recommend that ME/CFS patients explore the avenues that mindfulness can add to their healing.
- Optimum Health Clinic Just as you began to lose hope, you realized that being able to attend classes and sessions at OHC in London was in and of itself an achievement on your recovery journey. Also, making a habit of taking in the recovery stories of former patients was an excellent way of keeping your own hopes and dreams alive.
- TrueNorth Health Center When you first realized that you were having a crisis right after returning from a year of treatment in London, it was another crushing disappointment. I wish I could have told you then, that four months at TrueNorth in Santa Rosa, where you also continued work with OHC via Skype, would generate the final pieces of your recovery puzzle. Now all you have to do is create the space to properly follow the necessary protocol for your recovery. This is where the Freedom Challenge comes in!