N = 1
In light of some reactions to the ME/CFS medical recovery protocol article, I want to share some further thoughts for anyone who is interested.
Interrogation of the approach is good. You should engage in that process. Not with a stiff mind that ultimately thinks innovation is impossible and things that haven’t happened before can’t, but certainly very thoroughly and rigorously.
One hundred percent of my goal was to get better, which is very different from conducting a sound scientific trial to suss out cause and effect. It is almost certain that some of my conclusions are wrong. If you are going to try to repeat what I did, you should assume that you will encounter different obstacles than I did and that you and your doctor will have to hack novel issues.
When you are navigating uncertain, complex, and nuanced potentialities, you have to weigh risks in terms of the likelihood that they will occur and the severity of the consequences if they do occur. You will need to hone your judgment, which is a skill you can improve. What do experts say? What do most patients say? Given the facts in front of us at this moment in time, it appears there is a high likelihood that ME/CFS patients will experience severe tethered cord symptoms if they use the GHKs or do anything to lengthen their spine above a potential tether and that the consequences of tethered cord syndrome will be severe. So, you need to make a real plan that will enable you to address tethered cord syndrome quickly before doing anything that will lengthen your spine.
As I shared in the original article, I am less certain of the role and repeatability of the FSM. For example, it is entirely possible that the FSM only served to mitigate the level of damage my spinal cord sustained instead of directly causing the untethering. What I know is that FSM is what restored my ability to make it from bed to the bathroom (most days) during the longest 4 months of my life. After I had paralyzed my legs by triggering tethered cord syndrome from lengthening my spine with the GHKs, the first several hours of running FSM immediately restored my ability to walk about 30 feet. FSM is likely why my legs are recovering so well from a neurological standpoint. We know that FSM is not a mere symptom-management modality. It reliably treats a lot of conditions, of course, some better than others. If you are curious, listen to podcasts about it. Read the case studies. The Cleveland Clinic uses it. The United States Armed Forces uses it. The bottom line is that I still do not think it is safe for most people with ME/CFS to use the GHKs without a plan for quickly addressing tethered cord syndrome should it become an emergency.
It is important to take seriously the fact that many people who are left with severe enough tethered cord syndrome for too long do not ever recover the use of their legs. The neurological damage to their spinal cord is simply too severe.
I believe that the FSM played a direct role in my untethering, but it’s equally possible that I am wrong. It is possible, for example, that the anti-inflammatory and tissue modulating actions of the GHKs are what eventually drove the untethering. I strongly believe that something that I did weakened the tether significantly. I do not believe that I untethered by virtue of sheer mechanical force for several reasons.
Firstly, the GHKs work quickly. Within the first couple of weeks of use the GHKs lengthened my spine to its final level of tension (not to mention auto-reduced my chronically subluxated hips, shoulders, and elbows within four days of starting). So, the mechanical force was constant for months after that initial couple of weeks, it was not any greater five months in when I untethered than it was only couple of weeks into using the GHKs. The idea that the tether spontaneously released by virtue of the sustained level of mechanical force is unlikely because spontaneous recovery in cases of tethered cord syndrome are exceedingly rare and immediate surgical intervention once the diagnosis has been satisfactorily concluded is the standard of care (see pediatric study finding that earlier intervention, which can be reasonably assumed to mean less mechanical strain endured by nervous system, yields best outcomes: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6417055/ I am not a doctor, I am just trying to demonstrate how I thought through this; note that this being a pediatric study does limit its application to adult onset tethered cord syndrome). Suffice it to say, the less time you spend having a strained spinal cord, the better.
Secondly, there is another case of a patient who untethered via sheer mechanical force and there are some important differences between her immediate post-untethering symptoms and mine. After untethering, she peed a lot more blood than I did and for a lot longer. Her post-untethering sacral dimple bruise was far more severe than mine. To me, this is evidence that my tether was far weaker than hers the moment before it released. My lumbar fat pad has disappeared post untethering. To her knowledge, this other patient never had a lumbar fat pad.
I want to be crystal clear on this point: DO NOT ATTEMPT TO MECHANICALLY UNTETHER YOURSELF UNDER ANY CIRCUMSTANCES. It is extraordinarily dangerous. You could tear your meninges and never recover. You could herniate your brain into your neck and never recover. A lot of bad things could happen from which you would never recover. She got lucky. She acknowledges that and agrees that no one else should attempt to do this. Just completely banish this idea from your head.
Just a thought, if the GHKs indeed played a big role in untethering me, adding some GHK-cu injections more local to the area of the tether would probably be helpful. You and your doctor need to reckon with the idea that this is how uncharted these waters are.
We are very far from knowing what portion of ME/CFS patients in fact have a tethered cord, which is why I noted the small sample size in the protocol article. The best I can do is work with the information we have at this point. No one is saying any of this is ideal or certain.
Patients need to be very serious about anticipating the fact that they may a tethered cord without having any symptoms of it initially because tethered cord syndrome often becomes an sudden emergency when you do anything to lengthen your spine above the tether. Once that emergency starts you are not in a good position cognitively to adequately navigate and address it (this is so true that another recovered tethered cord patient texted me to ask me to edit the article to emphasize it). Especially because you are the ultimate director of your own medical care unless you become legally incapacitated or are a minor (depending on circumstances).
For context, I was pretty sure that I did NOT have tethered cord before the GHKs lengthened my spine. But that initial half inch of height added to my spine by the GHKs was enough to nearly completely paralyze my legs (I got even taller after the untethering eventually happened). The onset of the paralysis was very sudden one day after sitting in a low car with my hips bent fairly acutely while wearing a neck brace. It’s not fun when things go wrong, but you can gain a lot of insight. Lots of things changed very suddenly for me that day.
The cognitive deficits I experienced from tethered cord syndrome were far more severe than the cognitive deficits I experienced from C0-C6 instability. I know that may seem counter intuitive, but that does appear to be the case for many patients. As a group, ME/CFS patients often appear to consider the cervical instability pathologies as more serious than tethered cord syndrome, but I think that is mistakenly based on the fact that cervical fusion surgery is generally a more difficult recovery than from a section of the filum terminale (tethered cord release surgery) and usually happens first in time. The second time around people often have more of a “been there, done that” mindset, in addition to an objectively easier recovery.
What happened to me is very similar to the experience of many fusion patients in that they have no idea that they have a tethered cord, then their legs suddenly become paralyzed a few months after their spine is lengthened by the fusion, and they need a tethered cord release operation on a nearly emergent basis. There appears to often — but not always — be a somewhat mysterious several month long delay between the start of the added mechanical strain on the spinal cord and the onset of the attendant symptoms. In the case of post-fusion tethered cord syndrome onset, the patient has an established relationship with a neurosurgeon who is already monitoring them. Those patients have an out on which they can rely. Analogously, anyone who is embarking on a treatment that might lengthen their spine needs to make sure they have a reliable out in the event that they develop tethered cord syndrome.
