Tag Archives: dementia

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.

Weekly roundup

This week has been eventful in both good and bad ways.  On Monday I took my Dad to the GP for his memory test.  Sadly he did fail some sections and he’s now been referred to the Memory Clinic for further investigation, so it looks like the GP does suspect Dementia of some kind.  I can’t even begin to process the implications of that if I’m honest.

Tuesday I woke with a stonking migraine which I had all day.  Sod’s Law when the weather was glorious.  My coldsore turned nasty and, just when it was at the scabbing over stage, I developed another one right next to it.  There’s no need for it.  Zero needy-ness!  It’s now finally drying up but still cracking and bleeding every time I speak or eat!  At  least I’ve stopped feeling quite so fluey though – I was proper rough for days.


On Wednesday I had to give a 10 minute presentation at Camera Club on my favourite pictures of this season.  I took the opportunity to educate my fellow Photographers on Ehlers-Danlos Syndrome, showing them a simulated picture of how severe floaters affect my eyesight and how frustrating this is as a photographer.  I also took along the little leaflet I’d designed and was delighted when several members took one away with them and a further few asked me all sorts of questions.

Photo of floaters in visionI had one of the nicest days of my year so far on Thursday.  My Camera Club had arranged an afternoon out at a nearby beauty spot.  The spring weather was glorious, the company was great, we had a lovely potter around and then sat outside to eat lunch.  I wish I had the energy to do things like that more often and wasn’t quite so crippled with pain afterwards.

It’s been a month now since my GP wrote to my local hospital asking them to transfer me to Newcastle for my operation and I’ve heard diddly squat.  So I chased up the local hospital only to find they’d “never received a letter from my GP” and had no idea I wanted to be transferred.  I was absolutely furious, not only that the process of being seen in Newcastle hasn’t even started yet but that a very private letter containing personal medical details has disappeared to God knows where – how is that allowed to happen?!  The consultant’s secretary said it was up to my GP to write directly to Newcastle to refer me, whereas my GP had said it wasn’t her business and it was up to my local hospital.  As a patient it shouldn’t be up to me to chase this up or sort it out FFS!

I explained how concerned I am, being as though this mass was found nearly 5 months ago and cancer is suspected.  She said cancer is not suspected and I am not being fast-tracked.  I said that’s not what the consultant said in February, when the ultrasound had shown I had a complex cyst, my CA 125 result came back at 112 when it should be under 35 and that he was bumping me up the waiting list for surgery.  She didn’t answer that and said she’d chat to the consultant that afternoon and ring me back.  Only of course she didn’t.  I have no clue what business it is of admin staff to question my diagnosis or the urgency of my care.  I rang my GP again and asked her to re-send the referral request so it’s back to waiting.  It’s just not good enough and if this cyst turns out to be something sinister I will create merry hell.

On to more positive news.  Dr Afrin, arguably the world’s leading expert on Mast Cell Activation Disorder, has written a book on the subject hurrahhh! 🙂  Available from UK Amazon and USA Amazon but currently only in hard copy.  I’ve ordered mine so will let you know what I think when I’ve read it.   He also took a seminar for Doctors on the disorder down in London a few months ago and I’m currently investigating whether a DVD or recording is available of the event.  I do wish the World Health Organisation would hurry up and formally recognise MCAD as a disease so that the NHS would at least be forced to accept its existence.  If you have MCAD you’re supposed to be monitored twice a year – I haven’t seen anyone since my diagnosis in 2013 as I simply can’t afford any more private consultations with Dr Seneviratne even if I could cope with the 600 mile eight hour journey involved.

Wednesday was the 5th anniversary of the day I adopted Bertie.  He is exceptionally hard work to look after and takes up all my money but he is also the light in my life and I can’t imagine my days without him.  As I type this he is asleep between my legs on the bed and I’m getting a crick in my neck balancing my laptop on my right thigh and trying to type at an angle 😉