May is also MECFS Awareness Month

And I have been quite remiss in not saying more about this over the years. No, really.

picture of Norwegian white rat napping sweetly on a green blanket with her tail tucked
Sleepy Peanut

Just because I happened to figure out and find all the many and varied causes of MY chronic fatigue, and feel I have “solved my case” so to speak*, this does not do justice to my millions of missing siblings who have true Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, aka MECFS, which is incredibly and deeply disabling and life limiting for too many.

*I’m not cured to be clear, I just have explanations for my chronic fatigue that have proven reliable and some what manageable all these years.

I was first misdiagnosed with “Chronic Fatigue and Immune Dysfunction Syndrome” (CFIDS as it was called) back in 1993. But upon attending one support group where folks showed up barely existing in wheelchairs after not being out of their homes for months or years, I felt I didn’t belong. And I was right. It just took me another 25 years and quickly landing in a wheelchair at 45 to finally uncover my hypermobility and mast cell activation.

ETA 5/21/23: What is the difference between my “chronic fatigue” which yes, always worsens after exertion, but not for long, and “true” MECFS? Well, the latter involves something called PEM: Post Exertional Malaise. Which is so much more than just biomechanical or mast cell driven fatigue. (Though these may well contribute also.)

No, folks with PEM enter an almost hibernation-like extremely low-energy state after almost any minimal exertion at all – like, they’ve been zapped almost. It’s really hard to describe to folks who have never experienced it. It’s what leaves folks bed and home-bound the most, lending to the inability to see a doctor about it. You’re not just “tired”, and able to recover quickly. No. You are zapped of all energy, regardless of prior conditioning. And can take a day, week, month or year or more to recover, in some cases, alas. (End 5/21/23 edit.)

Just like with the forms of EDS and HSDs, people’s experience of disability from it run the gamut – from mildly impacted but still able to work part or even full time in some cases, to completely and fully bed bound, no kidding. Like, no, not even able to get up to go to the bathroom for days on end!

And most of the latter, most impacted folks cannot get to a doctors office to share this fact.

So they remain… missing.

From school. From work. From recreation. From medicine. From life.

One victim, Jennifer Brea was able to cut through and rise above the noise after producing the great independent film Unrest with the help of her dedicated husband in 2017. This went viral in our chronically ill communities in a good way, helping to connect people up and give a voice to the millions missing. Or some of them anyway.

Jen went on to uncover her Cranio-cervical instability (CCI) and Tethered Cord (TC) and she and others have since found some reprieve or even full remission upon addressing this with cervical-spinal fusion and Tethered Cord release helping to lift their skulls up off their hind brains. I and others feel strongly she showed/shows signs of a Hypermobility Spectrum Disorder or form of EDS as well, but she denied her signs to me at least in the past. (She felt she wasn’t hypermobile, even though family members were.)

Uhm, I’ve written at length on this blog why I feel lack of hypermobility or being bendy is not a good reason to deny EDS or HSD as a possibility. I proffer these two posts especially:

But I’m a Horse! Redux 2019

The Hypermobile Red Herring

Along with:

When Else to Suspect EDS and HSD

But is CCI treatment the answer for everyone? No. It is not a panacea either.

There’s a lively group of folks on Facebook pursuing this same avenue where appropriate. (It’s not trivial nor easy to get this surgery, nor should it be.) But not everyone can or should either. Please do due diligence and take great care pursuing this avenue even if you can.

I also think MCAS also plays a role as she also found. (I suspect they act up more when the CNS is threatened as happens with CCI, AAI and CCS.) Along with potential mitochondrial disease or disorders for some.

Meanwhile, some others have gotten better on various detoxes and cocktails of supplements to varying degrees. And others feel strongly addressing their child hood trauma is the key. (No affiliation.)

The great Phoenix Rising website and forum has been discussing all of these possibilities and the limited research to date for decades. And folks have been cussing and discussing all of the variations and possible contributing factors for years on Inspire and Facebook forums among others.

So I felt a bit remiss when I saw the latest exciting potential biomarker arise in the medical news (May 2023). Again, just because I’m not fully bed bound (though there are days still!) and can wrangle and explain most of my “drivers”, does not mean I should ignore everyone else’s plight.

Especially the plight of folks who literally can’t even get in to the doctor’s office to pester them, much less prevail as most of us with EDS or HSD can still do.

And yes, many are finding they have EDS/HSD etc, co-occurring. But not all. So, no, I do not feel that that is “the” explanation either. But just a contributing factor for some.

To all I’ve neglected all these years, I’m sorry. I’m here now, ready to help lift up your voices too. Because you’ve been neglected, and dismissed and ignored long enough. And are long overdue for some serious medical attention. (May 12th was Millions Missing Day 2023.)

Sadly, I fear that many new-found victims of Long COVID are helping to drive some new found interest in this field. I’m sorry, because it shouldn’t take yet more people becoming so sick and disabled – including many doctors and nurses – before anything is done.

But alas, that’s been true all along, including for the Ehlers-Danlos syndromes and newly defined HSDs.

I just dearly hope we move the ball forward quickly and far, for everyone’s sake. MECFS victims have suffered long enough, and too many have died unheard.

No more. I raise my voice with yours, today. And every May going forward.

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