Yesterday I read the most fascinating post by Jen Brea, author of the wonderful film Unrest. For those that don’t know, Jen developed M.E. after a meningeal-type viral infection 8 years ago and has been severely affected ever since. She also has dysautonomia/POTS (as many people with M.E. do), Mast Cell Activation Disorder (as many people with M.E. do) and has all the hallmark symptoms of hypermobile Ehlers-Danlos Syndrome only without the hypermobility (we hear this more and more, ie that people can appear to have connective tissue disease without having bendy joints!).
After being very ill for several years, Jen started not breathing when she lay down. To cut a long story short, she turned out to have cervical cranial instability (CCI) and tethered cord syndrome, both of which are among several neurological and spinal problems seen in hEDS. Jen admits she’s lucky enough to have access to one of a handful of specialists in the world who treats these diseases, and has the resources to fund surgery which she successfully had a few months ago. She writes about the remarkable transformation the surgery has had on her health and in particular that she is now in remission from M.E. That’s right, in remission from M.E. so severe she has been largely bedridden for 8 years! She also says her POTS has vanished and her MCAD is getting better all the time.
Yet she had classic M.E. No symptoms whatsoever before coming down with the meningeal-type viral infection back in 2011. So how on earth can a viral infection, which is the precipitating factor in most cases of M.E., cause mechanical issues like CCI and tethered cord? I’m no expert, but the obvious link is that the viral infection affects mast cells (which I’ve been saying for eons), which then weakens/affects connective tissue (as mast cells live in connective tissue) and this weakened connective tissue then doesn’t hold the spine in place properly. Of course, weakened connective tissue can also affect veins (leading to POTS) and all the other symptoms we see in traditional hEDS including things like gastroparesis and chronic pain. Having our spinal cord compressed would also account for brain fog, pins and needles, muscle twitching, vertigo and many of the other symptoms found in M.E.
So it looks like there may be two issues going on. There are people, like myself, who were born with hEDS. This may pre-dispose us to developing M.E. due to the issues having faulty connective tissue has on our mast cells, which are at some stage in our lives triggered by a viral infection.
There are also people who don’t have hEDS, but who develop a viral infection which affects mast cells, which in turn affects connective tissue.
So, one is the chicken and one is the egg but the end result is the same.
I have no doubt I have cervical cranial instability. For a start my head feels like a bowling ball sat on top of my neck and is much of the reason I have to spend 17 hours of every day in bed – I simply can’t hold my head up all day. Plus, if I’m sat upright and til my head backwards even a little way the room starts to spin, I get severe buzzy pins and needles throughout my entire nervous system, I develop palpitations, my brain feels like it’s cramping and just feel really, really, weird. I have also suffered from lower back pain since I was 11 years old, which wasn’t cured following surgery for rare congenital spinal stenosis. I can only assume I also have tethered cord or some other hEDS related spinal issue. Not that I’m going to attempt surgery for either, as I don’t have the money or support, and can’t tolerate the drugs or analgesics used in surgery even if I did.
It’s all food for thought. I’ve long suspected faulty mast cells to be at the heart of everything so, rather than going through the drastic step of surgery for CCI and other spinal issues, surely if we can inhibit mast cells that would stop the connective tissue from being weakened in the first place? At least for people not born with hEDS.
For those who have genetically weakened connective tissue the issue is more complex, but even so if we can inhibit mast cells would that not theoretically make our connective tissue less unstable?
I don’t know if any of my thoughts on the mechanisms involved in M.E. are on the money – I’m so dizzy and have such severe brain fog today it’s a wonder I’m functioning at all 😉 I’m sure my less brain-fogged and more intelligent readers will share their own theories.
I’m so thrilled for Jen though. She’s been to hell and back, yet despite that managed to make the best film I’ve ever seen on M.E. and promote it world wide. She deserves to be well and I hope her recovery goes from strength to strength.