It's my four year anniversary of ME/CFS remission. I'm doing well. I'll write a post on this soon. This journey has been complex. People's journeys can be different.
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Jeff Wood
@jeff_says_that
I solved my own case of post-viral ME/CFS. Full remission. I built a new model of ME/CFS that may also apply to Long COVID: Connective tissue, TBI, & SCI.
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And I built back that muscle, over years.
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My feet *hurt,* just from walking a few steps. They were on fire, atrophied from years of disuse.
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I had been bedridden, and then bedbound, for years. I had to rehabilitate my whole body.
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After my neurosurgeries, I felt sublime elation. I remember going to the grocery store for the first time in many years. The fruit aisles looked like 3D high tech chromatic bursts of unfathomable awesomeness.
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Prior to my remission, the main focus of my journey was to understand the underlying mechanism of my ME/CFS.
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FYI in case you haven't heard this thought, w the potential EDS you may want to make sure they're extra careful w her neck during surgery <3 This is a doc put together by that I just appended some citations brought up in a #MEspine group to
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Totally makes sense—overdoing it energetically *feels* like reinjury, and it hasn’t made sense to me that the pain/feedback I’ve felt is meaningless. I have CCI, stenosis, brain stem injury, and I improve when I can get chiropractic adjustments but don’t hold them long
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#LongCOVID folks should read this whole piece, including solid reasoning on why pacing, not exercise, is what helps in recovery:
twitter.com/jeff_says_that 7/
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Replying to @jeff_says_that and @ahandvanish
I wrote a piece on this: Could ME/CFS be a Chronic, Ongoing Brain and Spinal Cord Injury – That is Exacerbated by Exertion?
healthrising.org/blog/2021/02/1
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"Many of the issues that TBI patients face are thought to be mediated by the immune system."
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Some cases of ME begin with impact trauma. Others begin with a virus. The common denominator seems to be a problem with the body's connective tissue.
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"Understanding the interplay between mild traumatic brain injury and cognitive fatigue: models and treatments."
futuremedicine.com/doi/pdf/10.221
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I solved my own case of ME in 2017. I also developed a unifying hypothesis of the disease. The traumatic brain injury (TBI) concept is, in many ways, central to the hypothesis:
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Yes! My hypothesis is that ME/CFS is a chronic, ongoing traumatic brain injury (TBI). Post-exertional neuroimmune exhaustion is strikingly consistent with post-concussion syndrome as well as the TBI literature.
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Anyone have links on how Post-Exertional Neuroimmune Exhaustion (PENE) differs from traumatic brain injury or post-concussion syndrome? Or are they similar? #pwme
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Part of what I hope will come from exploring a mechanical paradigm of the disease is the development of methods less invasive, and less expensive, than neurosurgery.
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Let me acknowledge explicitly: I don’t have proof at this point that this hypothesis is true. My purpose here is to suggest reasons that this hypothesis *might* be true, and that we should follow up on the idea with research to confirm or disprove it.
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I am proposing that ME, as defined by any current or historical criteria, is a chronic, ongoing traumatic brain injury and spinal cord injury – that often results from connective tissue damage.
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As a general rule: Before going under the knife, you want to make sure you're correcting the problem that is contributing to the *bulk* of your symptoms.
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Thanks, Grace. Glad to hear this.
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I've been following. I read Jeff's original website when I first got sick and thought "thank f*ck that's not me". It's been a slow process of realising that oh dear, it actually might be.
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But! An added wrinkle is you want to make sure your craniocervical junction is protected during surgery. This is actually a tall order.
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On the other hand, if your C5-C6-C7 *is* the culprit, then your baseline symptoms should improve after (competently-performed) surgery to address it.
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What if the CCI/AAI is contributing to 90% of your symptoms, while the stenosis is contributing to only 10%? In that case, if you choose to address the stenosis at C5-C6-C7, but do not address the CCI/AAI, then your baseline illness symptoms will not improve by much.
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For example: Let's say you have CCI/AAI as well as disc herniations and stenosis at C5-C6-C7. How do you know which problem to fix, if any?
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While this sounds obvious, this determination is not always clear and *accurate*.
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As a general rule: Before going under the knife, you want to make sure you're correcting the problem that is contributing to the *bulk* of your symptoms.
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Mold exposure could be one of several top triggers of ME. I wrote about mold on my website, over a year ago.
"How could an infection, or mold exposure, lead to ligament damage? A potential answer: Collagen degradation."
mechanicalbasis.org/mechanical-par
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Replying to @purpurblatt and @jeff_says_that
If they did not want to consider various possibilities that might be contributing to some of their symptoms, I wouldn’t quite understand."
So if you're serious about the ANY, why not consider mold? Mold has been found to have caused the Lake Tahoe outbreak of CFS.
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Many of these families have a genetic connective tissue disorder, and quite a few of these people go on to develop ME after a virus or mold exposure.
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Interestingly, there does seem to be a genetic component to these structural neurological issues, as well. You will often see CCI, tethered cord, Chiari, etc., running in families, through the generations.
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I don't see any conflict between the Mechanical Paradigm and the ME outbreaks.
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There is much to learn from the ME outbreaks, including the possibility that the impacted populations had an underlying genetic vulnerability. It sometimes takes an “environmental hit,” such as a virus or mold exposure, to cause a genetically-vulnerable person to develop ME.
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There is much to learn from the ME outbreaks, including the possibility that the impacted populations had an underlying genetic vulnerability. It sometimes takes an “environmental hit,” such as a virus or mold exposure, to cause a genetically-vulnerable person to develop ME.
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The ideal would be to understand the connective tissue problem(s) enough to identify and intervene, non-surgically, before people develop clinical symptoms – or at minimum before symptoms become debilitating.
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Craniocervical Instability, Neurosurgery and M.E.: Just the Facts, Please. An Editorial by Jeff Wood.
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Neck rigidity can, and often does, accompany neck hypermobility. It might seem paradoxical, at first glance. When ligaments are lax, the muscles reflexively spasm to stabilize the affected hypermobile joint.
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Funny, but NECK RIGIDITY is frequently mentioned in papers about ME epidemics. Not hypermobility. twitter.com/AnilvanderZee/…
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83% of these ME patients had signs of intracranial hypertension (IH).
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The patients in this study all had ME, as defined by the Canadian Consensus Criteria. Of the 125 patients that had an MRI of the cervical spine, 80% had craniocervical obstructions.
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The "cure for ME" is to: 1. Find the underlying cause(s) in any *specific* case; and, 2. Address the underlying cause(s) effectively.
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Bragee and Bertilson's new article: Signs of Intracranial Hypertension, Hypermobility, and Craniocervical Obstructions in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
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Important.
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Replying to @exceedhergrasp1
And pay them.
Lived experience is priceless -- but that doesn't mean no pay.
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