A major part of the stories of #iamthefaceofMAID is that some health conditions are NOT recognized and/or treated in Canada (like MCS and hEDS). BUT!!! They are recognized by #MAID. This is THE disconnect Canada! This is why we need to talk about #IamthefaceofMAID 1/n
If #MAID will recognize conditions, like #MCS and #hEDS, and there are not even specialists in Canada that treat those conditions. Well, we have a problem.
2/n
The #hEDS community struggles every day, thousands of us, for treatment that we know is available but it is not offered in Canada. Often we travel to the US for diagnosis because there are so few specialists in Canada. The surgeries needed are not offered in Canada. 3/n
As a #hEDS patient with CCI and cervical stability issues I cannot even get the right type of MRI in Canada through medical services (a flexion-extension MRI) to be diagnosed properly. The only one in BC is in Kamloops and is not covered by BC medical. 4/n
Let me repeat. I cannot even get a proper diagnosis in Canada for my condition because we dont have the right MRI machines. No Canadian Neurosurgeons will even see #hEDS patients or look at their scans (we have all tried). 5/n
Our only option is 100K cervical surgery offered by two specialists in the US. The full expense of this would be born by the patient. Unfortunately many of us are simply too sick to travel for diagnosis and treatment and based on the cost it is out of reach for most families. 6/n
When I realized the women in the Simon's commercial was 36 and had already been euthanized and that we shared a diagnosis - its hard to describe how I felt - I was torn apart. I know each step she followed to get where she went and each thing that happened to me 7/n
to ensure that my path went in a different direction. I was her, I could be her. I could still be her. That things wont suddenly go downhill for me again is not a given. My health is very poor but somewhat controlled. Tomorrow, who knows. 8/n
#hEDS is a condition that most dont find about until their 30s or 40s after 20+ specialists and doctors. There is no reason for this. Its not a hard condition to diagnose. It should have been done when I was a child - when lifestyle changes could have made a difference. 9/n
My own diagnosis was by chance. A visiting specialist in #EDS from England was doing a sabbatical at the Genetics Center in Halifax when I had my appointment - they did a Beighton test right at the end of my appointment when they saw how much compression gear I wore. 10/n
This was in 2017. I was 43 when I was diagnosed after years of dragging myself from specialist to specialist all the while getting sicker and being told time and time again it was all in my head (and I was a tenured Biology professor at a major research university!). 11/n
Have you ever felt like your brain was on fire? This feeling is often linked to "Glutamate Excitotoxicity" - a process where neurons are exposed too high concentrations of the excitatory neurotransmitter glutamate leading to neuronal cell death.
Read paper: "Excitotoxicity Revisited: Mitochondria on the Verge of a Nervous Breakdown" (linked in comments)
Its probably quite common in #MECFS but then again it is super widespread across many neurodegenerative conditions and psychological disorders - which means that it would great to treat it but in and of itself treating it is not going to 'cure' MECFS.
Because it is SO widespread across so many conditions it has been heavily studied and there have been major research efforts to see if interventions could be developed to manage it (see image below).
Unfortunately (or maybe even fortunately as messing with fundamental pathways like this could have major unknown consequences) it has not been very amendable to direct treatment interventions.
There is however a way to help manage dysfunctions in this system. A backdoor so to speak. This is because the problem is not so much the glutamate itself, it is that the mitochondria are doing a poor job of processing it.
So, instead of trying to mess around with the glutamate levels directly or affect the clearance of glutamate we could instead focus on the mitochondria - which we know are struggling in MECFS.
"Therefore, one possibility might be to couple drugs that impact the glutamate responses with interventions that support mitochondrial bioenergetics, for example by promoting mitochondrial biogenesis or supporting intermediary metabolism, impacting both the mechanisms that may contribute to neurodegeneration in these diseases."
Check out the linked paper: it will really flesh out for you why glutamate has been such a heavily researched subject.
The bottom line is that mitochondrial function is probably where we should be focusing our intervention effort.
Methylene Blue, Photobiomodulation (PBM), the NAD pathway, Ellagic Acid and Urolithin a, as well as comprehensive protocols that address energy processing, amino acids, ALCAR and mitochondrial cocktails such as are used in mitochondrial disorders.
The Born Free protocol is also EXPLICITLY designed to modulate mitochondrial function.
Astaxanthin might also be worth looking into for these indications. see paper link below in comments.
Astaxanthin Protection against Neuronal Excitotoxicity via Glutamate Receptor Inhibition and Improvement of Mitochondrial Function (2022)
This makes me a little sick just considering this but I would not be surprised if Auvelity (a mix of dextromethorphan and bupropion) starts being pushed like crazy in #MECFS #LongCovid.
Given the big SSRI - serotonin/LC papers that hit in the last year you can actually see the lead up to these new psych meds being released for LC.
Adding an NMDA receptor antagonist to an anti-depressant is really insidious. If Auvelity worked for LC it would be the "dex" component and not the bupropion. We have known for ages that NDMA receptor antagonists might be helpful - other options are ketamine, memantine, as well as safer stuff like Magnesium, Zinc, L-theanine, NAC.
NMDA receptor antagonists are used for glutamate ecotoxicity (brain on fire) symptoms. We do have glutamate excitotoxicity but it is also present across most neurological conditions and many other diseases including depression. It is not a lever that will 'fix' MECFS in and of itself.
I have been hearing a lot about 'dextromethorphan' lately on X and while it is available OTC in cough syrup - its obviously not helpful to Pharma that needs it to be RX. So? A new drug mixing it with an SSRI (bupropion). If you want to try 'dex' just try the OTV version. Dont give in and get pushed into an SSRI.
Repeat: If you must try 'dextromethorphan' - please just get the OTC drug store stuff. Adding SSRIs just to try in post-viral conditions could have negative consequences. These are not disorders that will be fixed with psych meds.
I first tried "dex" back in 2014. All these interventions just keep going through cycles - we all try them - most fail and many have baseline decreases. It is not a miraculous PEM buster but it can lower glutamate ecotoxicity.
Its obvious the media is going to promote the #$%^& out of this:
What wont fail? Basic foundational optimization: nutrition, minerals, electrolytes, microbiome. Until our biochemistry is less dysfunctional and we actually are getting nutrients from food - nothing is going to work 'properly'. Doing this above is an intervention that will always be worthwhile. It may not make you better in and of itself, but it will set you up for it when 'disease modifying interventions' come down the pipeline.x.com/search?q=dextr…
This is pretty interesting (and actually somewhat surprising). I have known that plasmalogens were going to get major attention in the coming years for a wide range of conditions, from #LongCovid and #MECFS to autoimmune conditions like #MS, neurodegenerative conditions like #Alzheimers #Parkinsons and also cardiovascular conditions but this new paper (out of Australia) suggests that in the coming years we might be seeing a new standard cardiovascular marker based on plasmalogen levels.
I am not surprised by the evidence or usefulness of plasmalogen supplements - suggesting that plasmalogen levels should be used more generally as cardiovascular markers suggests that the potential importance of plasmalogens is really reaching the mainstream.
In this paper they discuss using shark liver oil. I am obviously not a fan of this source (I actually supervised a PhD thesis on shark biology and the consequences of shark fisheries on declines in top down control in oceans when I was a prof). Dr. Goodenowe has pioneered the production of synthetic plasmalogens which I believe are the best choice for a wide variety of reasons.
Development and validation of a plasmalogen score as an independent modifiable marker of metabolic health: population based observational studies and a placebo-controlled cross-over study (2024)
This figure is amazing. Let me explain. Its so obvious when you know what you are looking at.
ZO=Zonulin, Occludin, and Claudin are proteins that are involved in barrier function in the gut. Here they are stained with immunofluorescence. The regular spacing represents intact barrier function.
First line: The control is for 'healthy epithelium'.
Second line: When they add berberine to controls it gets a bit more disorganized.
Third line: When they add pro-inflammatory cytokines IFN-g and tnf-a the barrier function becomes totally disorganized.
Fourth line: When they add berberine to the pro-inflammatory condition it normalizes somewhat.
Berberine is notorious for being not an easy supplement to use, not very bioavailable and can cause side-effects.
Liposomal forms may help to counteract these issues:
When you look at MECFS management protocols (even ones that have been around for ages like Dr. Sarah Myhill's) one of the first set of recommendations is to address nutrient deficiency and mineral deficiency and heavy metals.
WHY?
Because nutrients and minerals are the co-factors that make our biochemical pathways work properly. Heavy metals are blocks to proper biochemical function. You simply cannot properly treat chronic illness without first repleting minerals and providing the body with the building blocks it needs for biochemical function.
I finally got my first set of Oligoscan results this week. I have been doing parts of the Born Free protocol (@joshual_tm) for a few months now but have been unable to get the CMA or mineral testing so was not able to personalize what I was doing. As of 2 weeks ago I am now doing ~95% of it and am committing to it for at least the next few months. I have also been detoxing mold and heavy metals and was interested to see if my detox pathways were blocked.
I am including the full Oligoscan results below. As 'non-optimal' as they are - I was actually quite pleased with the results and I think they suggest the work I have done the last few months has not been in vain (I was expecting them to be a LOT worse).
I am pretty stoked now to optimize my mineral intake based on actual data and also to be able to do monthly testing. A recent OAT and @biomesight is on the way and a CMA is also in the works.
The one big problem area was LOW ZINC and lowish COPPER. Zinc is probably THE most important mineral across the board for most issues and it is likely driving a lot of the blocks and pathway dysfunctions. Low copper is also an issue and will need to be repleted together. I will be tweaking my nutrient supplements (more D, C, Bs, E, A) and also adding Chromium, Zinc, Mitosynergy transdermal Copper, and more Silica and Molybdenum than I was using before.
The mineral deficiency score is driven in part by the low zinc which affects a LOT of the body's biochemical function.
Heavy metals falling into line. Aluminum, Cadmium, Tin highest but will continue chelation protocol.