Due to the complexity of Chronic Fatigue Syndrome and Myalgic Encephalomyelitis (ME) (which is the same condition), and insufficient research funding to date to tackle the issue, there is a lot of uncertainty surrounding how to approach treatment. There is very little consensus as to the condition or its treatment in fact.
Some people do recover or improve but there is a lot of uncertainty as to how this happens. Unfortunately a significant number of these ‘recoverers’ later regress, falling prey to CFS for a second time and with worse symptoms. So cases of recovery can also be misleading.
However, as of 2014, there are a number of researchers and doctors that have had some success with validating hypotheses on the basis of the disease and treatment approaches.
As a result of the ‘bleeding edge’ nature of treatments and diagnosis, people afflicted with Chronic Fatigue Syndrome (CFS) are ultimately left to decide upon their treatment strategy themselves. This can then guide their choices about doctors to work with, tests to pursue and self treatment interventions, from the many different approaches.
On this page I keep an updated overview of my treatment strategy, the hypothesis on the mechanics of the disease this is based on and my progress with it.
I presented an overview of my approach through to end 2013 and my discoveries at the Quantified Self Global Conference held in San Francisco, October 2013. You can watch this in the video below.
I came down with ME/CFS in early 2012, with a steadily worsening condition, and first got a test based diagnosis in November 2012 (although I had already suspected it). For me the disease progressed at an alarming rate, starting with strange headaches, sickness and exhaustion, moving to muscle weakness and twitches, gut issues, blurred vision, insomnia, neuropathies and at times difficulty walking.
Since my diagnosis I have been aggressively studying, collecting data on relevant biomarkers and experimenting with ‘the most likely to be effective’ treatments. The good news is that I have halted the (alarming) progress of the disease and have improved and recovered some lost function (e.g. neuropathies, energy levels, elimination of headaches) using a variety of ‘consistent’ interventions and protocols.
I believe that CFS is curable, but it takes time, patience and consistent intervention with a combination of therapies targeting the root causes and supporting recovery. I also believe that to make sure it is a permanent recovery, the work to repair the body and rebuild its resources must be continued long after symptoms have receded.
Different doctors and researchers have had widely varying results with different protocols and with different patients. Which is part of the problem of the condition. In my opinion ME/ Chronic Fatigue Syndrome is a multi-factorial disease that can be triggered by many different events and factors that combine together to create the diseased state.
I don’t believe that there is any one cause, and as a result, any one solution. This is part of why research has made such little progress. It’s dealing with a heterogenous population of sick people who have been pooled together, but in fact are combatting different causes to their “CFS”.
The diagrams below summarize my current view of the chronic fatigue syndrome disease process and my treatment strategy. They do not cover all of the details. More importantly – I use this as a constant reminder to focus my efforts and $$$ on:
- Studying and learning about the most important aspects of the disease and its biochemistry.
- Tracking the most relevant biomarkers to understand my status and progress.
- Treatments that have the biggest positive impact (and chance of ultimate success).
My research has focused on a few areas and the researchers / doctors/ civilian scientists working in those areas and some interesting experiences of patients.
These are listed by priority which is by certainty of impact (how well is the mechanism linking the area to disease defined? How actionable is the area with certainty of positive outcome?)
- Biotoxin Illness: Dr. Ritchie Shoemaker, Dave Asprey and Erik Johnson.
- Mitochondria: Dr. Thomas Seyfried, Aubrey de Grey, Dr. Terry Wahls, Dr. Sarah Myhill and Russell Blaylock.
- Pathogens: In my case specifically enterovirus, and the work of Dr. John Chia.
- Methylation: Rich Van Konynenburg, Dr. William J. Walsh, Dr. Amy Yasko and Dr. Ben Lynch.
- Toxins (Heavy Metals, Pesticides, other): Numerous researchers and studies.
I change, update and revise this list and my approach as time goes on and as I learn more.
Note: Thiol + Enzyme antioxidants include the glutathione peroxidase and glutathione reductase that are found most in Rich Von Konyenburg and Russell Blaylock’s work.