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Chronic Fatigue Syndrome: solving the biology

edited November 2017 in Research blog

The story of our treatment for CFS is a good example of how exploring the new field of subcellular psychobiology and developmental trauma can depends on luck, people, and circumstances. CFS was never on our list of research projects, yet now we treat it at our clinics. So how in the heck did this happen? 

It all started by accident in 2008. A team of four therapists were working with me in Scotland to open a new Institute clinic specializing in schizophrenia. One of this volunteer staff, Andrew, had a pretty serious case of CFS. He could only work at best an hour or two a day before collapsing. Although most of my day was spent training new staff and working on the testing of our schizophrenia process with clients, I would make time to work with Andrew to try and figure out what was causing his CFS problem. You should understand that I was fully focused on schizophrenia, as all of our staff time and money were being poured into this project. It never even crossed my mind to work on CFS as a product for the Institute. Instead, I was only thinking about how to get Andrew working a full shift!

It took about 3 months, but I finally realized his CFS symptoms were caused by almost completely blocked pores in his nuclear membrane. Essentially, at a cellular level he simply could barely breathe. To get an idea of what this is like, put an almost airtight bag over your head and then try to live normally - you quickly run out of any bit of oxygen you have in the bag, and then you collapse. In fact, most CFS clients can feel a whole-body sense of suffocation once they quit trying to suppress this rather awful sensation. 

Once we realized what his problem was, we relatively quickly found the cause for the coating on his nucleus, and suddenly his CFS was gone. He was completely normal again and remained that way.

Several years later, a young woman in the UK contacted me with CFS. Sure enough, she had the same blocked nuclear pores. So we tried a new treatment (that had already been tested for safety on a different problem) but it failed miserably. Worse, I couldn’t recall what had worked so well last time! I had paid so little attention to this side project that I simply forgot how I’d healed it (and so had Andrew).

Although this may seem surprising, I didn’t want to work with CFS because there were no medical tests that could reliably identify it, and worse, I fully expected it would turn out to have a number of unrelated causes. As research director, I simply couldn’t justify vital staff time to try and solve each one, when there were much more serious or life threatening diseases and conditions that we needed to keep focus on.

Several more years went by. This time, a neighbor with rather severe CFS volunteered to be a research subject. (I could justify spending the time since this was a personal side project.) Taking a new approach, I got her able to feel the suffocation, then healed her feelings around that. And her CFS vanished. I warned her that this was experimental and that we’d have to do at least two more treatments as is our standard procedure, and off she went. I didn’t hear back from her - not surprising when we do things for free - but when I ran into her again later at a local get together, she simply could not recall having the CFS symptoms go away at all. Worse, she treated me like I was some kind of charlatan, with anger and avoidance. What the heck had happened? It looked like amnesia. But from a professional viewpoint, it was likely she was displaying symptoms of extreme psychological reversal - a condition where the client feels they need their disease to survive.

Puzzled, I put that project aside again. A few months later, another CFS client contacted me, again with blocked nuclear pores. It was becoming clear that whatever CFS really was, it always had the same underlying subcellular marker. Since this implied it was probably only one disease process, I could justify spending some precious Institute research time, so I pulled in my entire staff to work on the problem. Progress was swift, and we quickly realized that there was an underling disease process in this client. Over the next few weeks, we figured out how to fix this underlying cause and eliminate the CFS. Fortunately, we used a process that we’d already tested extensively in years past, so safety concerns were minimal and limited to only unexpected variations in the CFS population. 

But this was not the end of the story. Far from it. 

We cautiously tested the new CFS approach on more clients, and it worked like a charm. However, a new problem arose, or at least was revealed. Some of these clients would be fine, as if they had never had a problem. By this time I had located my notes from 2008, and I could see how the newest technique was even better than the original. This group responded like Andrew had in 2008. Other clients would have the CFS also vanish - as predicted - but then would act quite oddly. Instead of being ecstatic that they could now live normally, they would immediately complain of other problems, ones it turns out that they had had before the CFS had even started. This second group also shared a similar psychological profile - a distinct, mild to severe paranoia and distrust, a pre-existing condition they had had since early childhood.

Let me give an example. One client wrote happily immediately after treatment: “I pushed myself for an hour and a half doing yoga, weights, some calisthenics, and also, because I haven't been able to do it in a long time, I played my guitar and sang.” The next morning we got a second email as if written by another person: “My nervous system is off the charts due to my abject terror of communicating with you. … I cannot and will not work with you further.” Although her CFS was still gone, it was clear something else was happening.

One of our ex-CFS clients with this paranoia was bravely willing to explore it further with us. Interestingly, he was surprised to realize that he felt at ease and comfortable with people who were also paranoid in the same way, but felt distrust of people who were not. We quickly tracked the cause down, but it took a while to come up with a treatment, a variation on something we’ve been doing for years and had extensively tested for safety. And as an extra bonus, this new treatment also nicely eliminates the CFS, lingering fatigue, and gives a nice peak state to boot.

Happily, serendipity had also struck, and struck hard - this side track into CFS has resulted in a more general approach for the treatment of many other serious diseases. This six year CFS odyssey has now drawn to a close, but it illustrates one of the hardest to understand aspects of breakthrough research - you simply can’t go in straight lines. Instead, it is more like a web, following a path until it gets stuck, then start over in another direction. And eventually, if you are really lucky, this allows you to build better models and create better techniques until you can solve the problems you started on.

From the desk of the research director,
Dr. Grant McFetridge
June 15, 2014
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