Tag Archives: causes

A new perspective

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.


Jen Brea’s wonderful docu-film on M.E. ‘Unrest’ is still being shown around the world and if you haven’t seen it yet and suffer from chronic illness or care for someone who does you absolutely should, whether you have M.E. or not.  It was recently screened at UC Berkley and there followed a panel discussion with some of the leading M.E. researchers in the world which is available to view for free here.  I learned nothing from the discussion that I didn’t already know but it made a refreshing change to hear Ron Davis’ honest point that we have no idea as yet what causes the disease and I was heartened to learn that he shares my hypothesis that it is a single entity and will turn out to be something very simple.  M.E. causes widespread symptoms, the severity of which differs between patients (as happens in other neuro-immune diseases such as Multiple Sclerosis) but the causal trigger will be the same mechanism for everyone and IMHO will be an issue with our immune system.  I will not be swayed from this view so don’t bother trying 😉

One of the points that I took away from the discussion, which involved questions from patients, is how we all have our own bias when talking about M.E., myself included.  Erik Johnson, a long term advocate of CFS, believes his and many other people’s illness was triggered by Sick Building Syndrome/mould.  Another patient asked about EMF (electromagnetic fields) and their role in the disease.  I read lots of comments online from patients who are convinced they know the cause of M.E. and it’s x, y or z depending on how their own illness developed, none of whose views I share.

My own illness was triggered by a viral infection but later made significantly worse by travel vaccinations, however I don’t blame the vaccine or any component of it such as preservatives or heavy metals for making me ill – I blame my immune system for not responding appropriately to the injection.  Just like I blame Erik’s immune system for not responding appropriately to mould, not the mould itself.  As I said earlier I’m convinced that a breakdown in the functioning of part of our immune system will turn out to be the cause of M.E. and the triggers will vary – for some it will be vaccinations, for others mould exposure, for others viral infections and so on.  It’s the only model which fits everyone.

M.E. can, and does, run in families so of course the subject of genes came up.  I’m not convinced by the genetic argument or that genes are particularly implicated, at least not at the level we currently understand.  What I do think is that our immune system is genetically influenced, for example parents with allergies often have children prone to allergies, so it stands to reason that the potential for the immune system to be dysfunctional can be genetically inherited but again the environmental trigger for that dysfunction will differ from person to person.  I’m unconvinced, however, that the conclusion is going to be that ‘gene x mutation predisposes towards M.E.’.  The answer is going to be simple but not that simple.

The one thing I am utterly convinced about is that M.E. is treatable, no matter how seriously ill a person is, and that full recovery is absolutely possible.  It may be that we need to take medication for the rest of our lives to keep our immune system functioning healthily but I know I have glimpsed almost full remission following changes in my immune system (when starting with a cold for example) and if we can replicate these changes using drugs returning to full health is not beyond the realms of possibility.  In fact, it’s a certainty.  Having said all that, decades of illness will have affected our bodies and things like heart disease and osteoporosis from years of inactivity will be a lingering legacy.

‘Unres’t is available to view on DVD, Netflix, iTunes, Google Play, Vimeo and other platforms.





Research trends

I’ve mentioned recently my frustration at the current research trend in the M.E. world to focus on energy production when, as a sufferer, I know that the ‘fatigue’ (for want of a better term) I experience is merely a symptom of immune activation not the root cause of my disease. Researchers have been studying energy production, in particular the mitochondria, as a cause for M.E. for over 20 years now and still haven’t found anything, which leads me to conclude there is nothing to find.  I’m not suggesting that mitochondrial dysfunction isn’t part of the disease picture but it’s definitely not the cause.  I wish these people would talk to patients more, especially we old timers who’ve lived with the illness for decades!

I’m equally unconvinced by the current trend to put every ailment known to man down to gut issues (SIBO, flora, bacteria etc) – it just feels like the current ‘hot new thing’ in a very long line of ‘hot new things’ on which to pin disease.  My Dad excitedly kept an article out of his newspaper for me this week which touted “answer to chronic fatigue syndrome found in the gut” and, much as I love him, I just sighed.  Here’s the thing: most cases of M.E. start with some kind of viral or toxic event (OP poisoning, vaccinations) but the event is different in all of us – mine was a tummy bug, yours might have been glandular fever, someone else’s a Hep B vaccine.   If we’d all started with a tummy bug then I’d be much more open to the disturbed gut theory, but we didn’t.  The one thing we share is immune activation, so for me the answer has to lie in the immune system and in particular its response to viral or toxic trauma.  As I’ve said before, if researchers studied why people with the flu are so weak and exhausted they can barely get out of bed they’d go a long way to finding out the cause of M.E.  In fact, it gobsmacks me that no-one has looked at that before now!

No offence to my American friends, but there is a mould trend going on in the States with everyone convinced that mould is the root cause of their issues and it makes me want to chuckle.  Northern England is wet for 10 (sometimes 12) months of the year, humid in summer, we mostly live in houses which are at least 100 years old and inherently damp, so I’m sure mould is everywhere.  We couldn’t escape it if we tried.  Yet not every Brit you meet is sick and we don’t have a larger M.E. population than any other country as far as I’m aware.  Obviously rampant mould growth, where you have black stuff growing on your ceiling, is hazardous to health and must be dealt with but other than that we in the UK don’t give mould a second’s thought – it’s been around a lot longer than we have and as a species we’ve managed to survive.

I’m just as cynical about the current inflammatory trend.  Inflammation, it seems, is everywhere and is causing total havoc.  Only of course it’s almost impossible to measure inflammation or to say, if inflammation is present, why it’s there and whether it’s a good thing or a bad thing.  When we cut ourselves the wound is immediately inflamed which is a painful, but absolutely necessary, part of our body’s response and vital for healing.  And before anyone comments, yes I know there’s a difference between acute and chronic inflammation but who’s to say chronic inflammation isn’t just as protective as acute?  It’s got to be there for a reason and we’d do better to find out why our bodies are enlisting our inflammatory response, rather than blaming the inflammation itself.

Going off-topic slightly, the trend of foods purportedly giving you every disease from cancer to Alzheimer’s drives me insane.  We have no idea what causes Cancer and even less idea what causes dementia, so for anyone to say “burnt sausages give you cancer” or “broccoli reduces your risk of Alzheimer’s” is absolutely absurd and makes me furious.  In fact, I’d go as far as to say researchers who tout this nonsense should be prosecuted.  The same goes for anti-inflammatory foods.  If we have no accurate way of measuring inflammation, how do we know what foods affect it?!

There have been articles in the newspaper this year saying “exercise staves off dementia” and “lack of sleep increases risk of dementia” and I think “what a crock of shit!”  My Dad, who is 78, still walks 8 miles a week up a mountain and, as a former marathon runner, has exercised vigorously his entire life.   He’s never had insomnia and sleeps 9-10 hours a night without a problem, yet has dementia.  My Mum, on the other hand, hasn’t exercised since she was a child and wakes at least twice a night every night, yet she is totally mentally on the ball (when she’s not drunk!).  All these articles do is play on people’s emotions.  We don’t have a clue what causes Cancer or Alzheimer’s and that lack of control scares us, so we focus on what we eat or how much we exercise because those are two things we can control and it makes us feel better.

I’m no psychologist, but much of the information currently touted as being bad for our health, or good for our health, is environmental – sleep, exercise, food and living conditions.  In other words, all things we can control.  We’re extremely fearful of the fact that Alzheimer’s or Cancer might be viral, bacterial, or genetic, or even worse some novel new thing we as yet know nothing about, and therefore outside of our control.  We’re fairly arrogant us humans and think that we have power over our bodies, when in fact life is mostly just random and shit simply happens.  If keeping mentally alert staves off Alzheimer’s how come author Terry Prachett developed it in his 50s?  If the phytoestrogens found in soya stave off breast cancer how come soy munching vegetarian Linda McCartney died from the disease?  How come my Mum, a lifelong smoker, couch potato and current alcoholic, is nearly 80 and has never had cancer and her non-smoking, tea-total, bike riding sister died from it?  None of it makes sense and that’s the very thing that scares us the most.