Category Archives: Medical & treatments

Conflicting advice

This post isn’t about my own health but it does go to show what we patients can face when dealing with Doctors and the conflicting advice they sometimes give.  It’s going to talk about poop, so if you’re having your breakfast finish your Cornflakes first 😉

My Dad has spinal stenosis caused by both arthritis and bulging discs in his back, is struggling to walk and is on the waiting list for surgery.  Last Tuesday I took him to the RVI Hospital in Newcastle to see the surgical spinal team for a consult.  He’s been struggling to poop for about 6 weeks now – he’ll miss a day, then the following day will poop but it can take him a good half hour before it makes its way out.  We were told by the Consultant that if the constipation got any worse we had to go immediately to A&E because it was an emergency and if it wasn’t sorted could mean he could end up with nerve damage to his bowel and a permanent colostomy bag.  It was our understanding that if he became severely constipated his back surgery would need to happen sooner rather than later.

Unfortunately this exact scenario happened just three days after the appointment.  His last bowel movement happened on Thursday and by Sunday morning he hadn’t pooped for 3 days, despite eating normally.  So we rang the GP who sent for an ambulance which took us to our local hospital.  I went with him and told them what the spinal Consultant had said – that if this happened it was an emergency and we had to report to A&E.

The Doctor who examined him seemed a bit baffled that we’d rocked up at A&E with constipation.  “Didn’t you think to just take a laxative?” he queried.

The upshot of 4 hours in A&E was that my Dad was given a suppository which made him poop and some Lactulose laxative to take before bed and sent home.

As a family we’re now all a bit confused.com.  After it being impressed on us by the spinal Doctor that severe constipation was an emergency, we were then made to feel a bit stupid for going to A&E with such a minor symptom and simply sent home.  So yesterday I decided to ring the RVI and ask the advice of the Surgeon as to what we should be doing, if anything.  I was told by his secretary that someone would ring me back but have they?  No.

Despite taking the laxative before bed on Sunday night my Dad didn’t poop again all day yesterday.  Something has clearly become worse in his spine and the nerves in his bowel aren’t receiving the correct messages to tell his muscles to shove the poop out.   The poo is all there, and could clearly be seen on the Xray in A&E, but it’s just backing up and my Dad is unable to expel it.  The Doctor in A&E said it’s not an emergency but the Doctor at the RVI said increasing constipation was to be taken very seriously.   What are patients supposed to do in these situations?!  I feel disloyal ignoring the advice of the A&E Doctor but at the same time he’s not a Neurologist who deals with spines every day of his working life, so I’m more inclined to believe the spinal consultant.  However, if he doesn’t return my call he clearly doesn’t think it’s important.  So when does it become important?   If my Dad doesn’t poop for 3 days, 5 days, a week…………..by which time his bowel could be damaged forever?  I am so confused and honestly have no clue what to do.

 

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MTHFR Study

Back in 2016 I became aware of a gene study in which researchers at the Institute for Neuro Immune Medicine were hoping to put together a genetic database of over 10,000 patients with ME/CFS so that genetic information would be available for researchers looking into the cause of the disease.  Luckily I’d had my genetic data mapped by 23andme years ago so I was able to participate in the study which simply involved filling out a questionnaire and sending off my RAW data via email.

I heard nothing for 2 years and then this week received a message to say that I had a MTHFR mutation and researchers were interested in studying this.  Up to 50% of the population may have a MTHFR mutation and it doesn’t mean you are going to develop a disease.  In fact it usually has no impact on health at all, though it may predispose people to certain illnesses if other environmental factors are present or mutations in related genes are found.

Amongst other things, the MTHFR gene is responsible for the conversion of folate (also called folic acid or vitamin B9) from the food we eat into activated folate.  When the MTHFR gene is mutated this conversion doesn’t work as well and can result in a folate deficiency.  Activated folate belongs to a group of ‘energy’ vitamins and a deficiency may produce fatigue and cognitive changes.

The new study would involve taking a L-Methylfolate supplement (the active form of folate) for 3 months to see if it had any impact on symptoms.  Unfortunately, however, as the research involves a blood draw it’s only available to people living in the United States so sadly that rules me out which is a shame as the fact it doesn’t involve taking drugs means it’s probably the one study I could have taken part in!

My only concern with much of the current research into ME/CFS is that it focuses on fatigue, and while fatigue is obviously a large part of the disease ME is not chronic fatigue.  It’s characteristic symptom is post exertional MALAISE.  I feel ill when I’ve done too much (in fact, I feel ill most days of my life) and it’s this researchers need to study.  If I’m on the computer for too long I start to get a sore throat and if I walk too far I start to feel fluey – I’m not simply ‘tired’.  As there is no diagnostic test for ME many people with chronic fatigue of unknown cause have been diagnosed with it and it’s sadly become a bit of a dumping ground which can only muddy the waters for researchers.  If you take a L-Methylfolate supplement and suddenly feel loads better you didn’t have ME in the first place, you had a folate issue.

While the MTHFR gene has other functions and may be implicated in cardiovascular disease, I personally don’t think MTHFR mutations are going to be the answer to ME, at least not unless they have some kind of massive impact on people’s immune systems we as yet know nothing about.  That’s my take on the situation anyhow but then I am a cynical old timer 😉  In fact, I wrote a post about MTHFR back in 2015 which states my views on the whole MTHFR issue – be warned, I’m not exactly on board the MTHFR band wagon.

ME aside, if having a MTHFR mutation can make you tired that’s obviously not a good thing when you already feel like the walking dead.  Luckily folate rich foods naturally contain the active form of folate and studies have shown that a folate-rich diet can match the homocysteine-lowering effects of a L-Methylfolate supplement.  My diet is already quite rich in high folate foods, such as beans, lentils, broccoli and mangoes though if you have a MTHFR mutation and are unable to eat folate rich foods it might be worth taking a L-Methylfolate supplement but be warned they can have side effects which you can read about here.  Personally I’m not giving the whole MTHFR mutation a second’s thought, that’s just my personal choice.

If any of you would like an informative, easy to read guide on MTHFR there is a decent one here.

 

Treatment of peri-menopause

When you’re going through any change in your life, particularly if it’s health related, it’s often comforting and reassuring to read about other people’s experiences and/or to read up on the facts.  I’ve sometimes felt a bit isolated and bewildered during my peri-menopause because when I’ve asked older women I know about it they’ve either looked embarrassed and changed the subject or told me they didn’t even notice their transition and simply stopped having periods (!), so I’ve had to resort to Google and forums to find out if my experience is normal.  It’s such a relief to read that other women are having the same issues as me though of course no two experiences are ever the same, but some of the advice I’ve heard from so-called experts, including female gynaecologists who should sodding well know better, has driven me insane.

I’ve read from several websites that “lifestyle” choices can “treat” the brown discharge I’ve experienced this month.  Apparently I have to drink more water, exercise more and improve my diet.  Oh do fuck off.  Having a bleed replaced by brown discharge when you’re nearly 51 simply signals the end of peri-menopause and the start of actual menopause – no amount of Perrier or walking up a mountain is going to ‘cure’ it.  It’s natural and no treatment is needed.

The only cure for the pain I’m experiencing is a hysterectomy, due to the fact I have severe endometriosis and adenomyosis.  Unfortunately, due to my MCAS and almost total drug allergies, this isn’t feasible otherwise I would have had it done a decade ago and saved myself years of torture.

Peri and actual Menopause are natural, if oftentimes not particularly pleasant, times in a woman’s life and not diseases which need to be treated.  Obviously for some women the symptoms become unbearable and they absolutely need hormone and other help, but for anyone to suggest that drinking more water or eating more leafy greens is going to provide relief is ludicrous.  Neither food, drink nor exercise is going to replace our dwindling hormones.

Instead of giving out bollocks information I wish there was a website that just told it like it is.  Which explained that many peri and menopause symptoms aren’t very nice but to just grit our teeth and get on with them cos they won’t last forever.  Or, if the symptoms are really bad, pointed us in the direction of effective treatment, eg which is the best hormone cream, the differences between cream and pessaries, how long to use them for and what side effects to expect.  Now that would be useful.  The thing that would be most useful, however, would be large scale research on what actually happens to women during peri and menopause so there was some proper understanding of the symptoms, the phases, how long it lasts and what’s normal and not normal.  Yes we’re all different but there are common themes as anyone who reads the message boards can see.  The current inaccurate advice seems to be to ask your Mother, because your menopause will mimic hers.  We’re not clones for heaven’s sake!   My Mum’s menstrual history is worlds apart from my own and her Menopause and mine have been polar opposites.  We aren’t just made up of our Mum’s genes we’re also made up of our Dad’s, so maybe I take after my paternal Aunt or Grandmother or maybe I’m just unique!  Some up-to-date research on the effectiveness of HRT for symptoms like hot flushes and vaginal atrophy is also sorely needed, and the truth about the risks of using hormones after the menopause in terms of side-effects or increasing female cancers.  We’re not supposed to have hormones after our 50s, so what are the consequences when we artificially replace them?

However, as with most things which affect women this information isn’t available.  A few years ago my Mum was having issues ‘down below’ so was referred to a very nice, and honest, gynaecologist who told her that historically women haven’t routinely lived to their 80s so we’ve no clue what’s going on with their hormones at that age or how to treat the problems older women experience.

On the one hand we’re told menopause is normal so isn’t worthy of research and on the other every Tom, Dick and Harriet is trying to ‘cure’ us with bullshit or unsubstantiated advice.  I don’t want to read about bio-identical hormones from someone who has a book to sell either – I want impartial information from Doctors who aren’t making a profit off my misery.

Unfortunately should this information ever be available it will come too late for me as I’ll be through Menopause and out the other side.  I feel, therefore, it’s important for me to discuss my transition which, for some bizarre reason, seems to be one of the last taboos – we openly discuss puberty and pregnancy these days but periods and the Menopause are still firmly in the closet.  It still amazes me when I mention my peri-menopause that people look shocked, like I’ve admitted to urinating in public or something!

A female MP this week was late to a House of Commons debate on period poverty because she was unwell due to her period and it made headline news.  It’s the 21st Century FFS – women shouldn’t have to hide their periods like it’s some kind of dirty secret!  Even some women discussing it were unsympathetic, told her to stop being a wuss and to be more professional.  I’m disgusted with them.  Some lucky women sail through their lives with perfectly healthy periods they barely ever notice, but for others periods are a kind of living torture.  I’ve suffered with endometriosis since I was 13 years old and by the time I was 40 was so exhausted from the suffering that I literally wanted to top myself.  Why can’t these judgemental women have some compassion for those whose experience is different to theirs?  I wish more women discussed their periods and menopause in polite society because then it would be the norm and we wouldn’t have to try and act like nothing is happening.

Menopause isn’t a disease, just like pregnancy isn’t a disease, but oftentimes there can be problems and it’s hard to treat those problems when Doctors have hardly any accurate information to go on.  Considering Menopause is something every woman on the planet will go through it’s gobsmacking that it’s still in the relative dark ages when it comes to research and understanding.

 

Killed by M.E.

The death of a young British woman has officially been attributed to M.E. this week and is the second time in Britain an Inquest has recorded M.E. as causing a sufferer’s passing, the first being Sophia Mirza in 2006.

Merryn was 21 and had suffered from severe M.E. since she was 15.  In the end she simply couldn’t tolerate food and starvation lead to her tragic death.  When I was severely affected I was simply too weak to eat solids.  In those days M.E. wasn’t treated in any way and my GP just said to get some Complan from the chemist 😦  I lived off smoothies for a year which in no way provided enough nutrition and, like Merryn, weighed under 6 stones (80lbs/36kilos).  When I was hospitalized they sent for the psychiatrist who put in my notes that I was anorexic – I couldn’t get them to understand that I was starving and wanted to eat but my body just wouldn’t take food!

Reading through Merryn’s story it was interesting to see that her M.E. began with hives and swelling following a holiday in Europe.  Knowing what I do about mast cells and my own situation I can’t help but wonder if they were involved and of course MCAD can cause awful problems with the gut.  It is not, however, going to show up on testing unless you specifically look for mast cell mediators which at the moment requires a person to go to a lab and have fresh samples done, something a severely affected M.E. patient is way too ill to do.

Merryn’s family had the brave forethought to donate her body to the M.E. Association’s Ramsey Research Fund for examination and the pathologist found brain ganglionitis (ie inflammation).  This has been found before on the post-mortem of another M.E. sufferer.  The pieces of the puzzle are consistently all there if only Doctors were properly looking for them.

My heart goes out to Merryn’s family.  I can’t imagine what the years of her illness, or the past 12 months, have been like for them.  They have been so strong in donating her body to help other sufferers and I’m just relieved that the Inquest quite rightly put Merryn’s death down to this devastating disease because if she didn’t have it she would still be alive.

 

 

Self-medication

My Mum has spondylitis and severe osteoporosis and is often in pain with her back.  Paracetomol (Tylenol) doesn’t touch it and she refuses to take codeine as she then can’t poop, so during a particularly bad spell a couple of months ago she got some Ibuprofen from the supermarket to try and, hurrahhh, it worked wonders.

After a couple of weeks of taking just 4 tablets a day, however, she started to feel unwell and to cut a long and scary story short she ended up with stage 3 Acute Kidney Injury from the drugs, alongside fluid around her heart and on her lungs.  This innocuous medication, available from just about anywhere, nearly killed her.

We chronic illness sufferers, especially those of us with misunderstood diseases and very little health care, take all sorts to try and help our symptoms.  Vitamins, minerals, herbs and tinctures, hormones, over the counter drugs and all manner of other stuff we don’t discuss first with our GP and it worries me.

The problem is with much of this “medicine” for want of a better word is that it’s not regulated by anyone other than the people who manufacturer it and who have a vested financial interest in getting you to buy it.  Even some regulated and approved drugs, such as the Ibuprofen my Mum took, may interact with other drugs, herbs, supplements and vitamins we’re taking or may simply be contra-indicated with some of the symptoms or diseases from which we suffer.

Taking too much iron as a supplement, for example, can cause stomach pain, nausea and vomiting and if you continue the excess iron accumulates in internal organs, causing potentially fatal damage to the brain and liver.

Too much vitamin D from supplements can cause a buildup of calcium in your blood which can cause nausea and vomiting, weakness, and frequent urination.  Symptoms might progress to bone pain and kidney problems, such as the formation of calcium stones.

Too much colloidal silver can permanently turn your skin blue and St John’s Wort can decrease the efficacy of birth control pills and harm unborn babies.

In addition, no-one has any idea what effect taking Ginkgo Biloba alongside antibiotics has, for example, or mixing thyroid medication with a chondritin supplement.

Because of my Mast Cell Disease I’ve reacted to several fairly innocent supplements, including B12, GABA, Senakot tablets, heartburn tablets and even hops in a herbal tea.  If you’re taking a herb, vitamin, mineral or supplement to try and help a medical problem you’re hoping it will have an effect on your symptoms but you have no clue what else in your body could be affected along the way.

The rapid fall into life-threatening ill health suffered by my Mum from a simple over-the-counter pain killer was staggering and it’s certainly taught my family a lesson in checking with our GP first before taking anything new.

 

 

Mild Cognitive Impairment

This post is off topic to my own health issues, but is something I’m currently dealing with with my step-Dad and being as though we all have parents it might be something some of you are also facing or will face in the future.

I’m going to start by saying I am utterly convinced my step-Dad has a learning disability of some kind, though as a child in the 1950s of course this was never investigated.  He was just labelled as “stupid” and shouted at a lot 😦  The reason I say this is:

  • He ties his shoe laces in a very bizarre fashion.
  • His handwriting and spelling are appalling.
  • His logical thinking is even worse.  For example the light bulb blew on the landing one day and off he toddled up the stairs with a new bulb and an axe in his hand.  When asked what he needed the axe for he said “if the bulb is hard to get out I’m going to give it a bit of tap” not understanding that hitting a glass bulb with an axe is going to break it into smithereens.  Another example is that we were having a new dishwasher fitted and needed a 3″ hole putting in the external wall of the house for the waste pipe, which my Dad thought he could achieve using a hammer and a dinner fork :-/
  • He is hopeless at sequencing and couldn’t put together a piece of flatpack furniture, or follow a recipe, if his life depended on it.
  • He’s never been able to repeat back a tale correctly, so much so that we’ve never been able to rely on him to accurately tell us anything which has at times made life hugely difficult and is the reason I insist in going to all his medical appointments with him even though he hates me being there.
  • He is very emotional and can cry at the drop of a hat, and lose his temper at the drop of a hat.

Having said all that, he is by no means thick and for some things has above average intelligence.  His memory has always been superb, I think because he’s always had difficulties with reading so has developed his memory skills to compensate.  He is also excellent at maths and can do mental arithmetic better than anyone I know.  I feel immensely sad that he has never been assessed for his learning difficulty because I think it would have done heaps for his self esteem to know that the issues he’s faced all his life haven’t been down to lack of intellect, but rather a brain disorder he could do nothing about.

The reason I tell you all this is to set the scene for the difficulties we faced in realizing he was starting with cognitive problems in his mid seventies.  Because some his behaviour has always been a bit strange, his ability to rely information dodgy and his reasoning ability off, when he first started with cognitive issues we didn’t even notice.  It was only when his once superb memory began to be affected that a huge red flag was waved.

One Mothering Sunday I was taking my parents out for lunch to a Hotel in the town where they live and my Dad, who was driving, couldn’t remember how to get there in the car.  He used to drive for a living and has always been excellent at directions, so to say this came as a shock to us all is an understatement.  He then started forgetting acquaintances names when he was telling us who he’d bumped into while out for a walk and struggled to recall the names of actors in tv shows, which used to be his speciality.

My Mum then started to express concerns about his driving, saying that he’d driven through red traffic lights without evening noticing them.  He was very easily distracted and didn’t seem able to carry on a conversation and drive safely at the same time.

He’s always been someone who likes routine, but now when his routine is disrupted he becomes tetchy and agitated and he simply can’t cope with two things happening at once.  He has developed rituals which take ages to perform, for example at 7pm on Friday nights he goes out to play darts but has to start getting reading at 5pm.  Quite what he does for 2 hours is anyone’s guess, because all he needs to do is change his clothes, collect his darts and money and put his coat and shoes on, but he faffs on for ages and if something happens to break his ritual he gets really stressed.

After about 18 months of memory decline he also became very tired all the time.  He could sleep for ten hours a night then get up, have breakfast and nod back off on the couch at 9am.  This was so unlike my usually active and full of life Dad that Mum and I decided he needed to see the GP.  However, we didn’t want to worry him so being as though he was also having trouble with his water works I made an appointment with this as the excuse, but beforehand I wrote to his doctor outlining why we were really there but telling her not to mention the “dementia” word as we were hugely worried that my Dad might become anxious and depressed if he thought that was on the cards.  She was excellent, initially talking about his tiredness and urine issues then going on to subtly ask him about his memory and any other problems he might be having.  My Dad, though, is a person who will never admit to being ill and told the GP that he had no other problems other than weeing in the night – thank God I’d filled her in on his memory problems otherwise she would have been totally in the dark and his symptoms not investigated.

The Doctor referred him to the local Memory Clinic and within three months he’d had an extensive assessment carried out in his home by a lovely specialist nurse.  This involved lots of written and verbal tests and, to our absolute astonishment, he passed with flying colours.  Seriously, he did superbly – my Mum and I mentally took the test alongside him and he outperformed the pair of us!  How could he be having such issues in day to day life yet perform so brilliantly when tested for cognitive deficiencies?!  He was also told he would have to re-take his driving test, which again his passed no problem, and his brain MRI scan came up totally normal.  In one way this was fab but in another it was hugely frustrating – his family knew he was having difficulties but for the most part they simply weren’t being born out on the tests.  Having said all that they did pick up on the fact that he used inappropriate language in converstion, had some issues with spatial tasks and his memory problems were apprent in taks involving verbal recall.

He was diagnosed as having something called Mild Cognitive Impairment (MCI) which means he has more cognitive problems than a healthy person of his age but they aren’t serious enough to be classed as dementia.  He has to be re-assessed every 6 months though because a percentage of people with MCI will go on to develop some form of dementia over time.

My step-Dad is now 78 and over the last year his memory has worsened, though not worryingly so.  He has started a new behaviour, though, which I could find nothing about online.  He whispers to himself constantly, but he knows he’s doing it and only does it when he’s alone.  It’s common in Alzheimer’s for people to talk to themselves in mirrors or to hallucinate and talk to imaginary people, but they don’t know they’re doing it which isn’t the case for my Dad.  I also know healthy people talk to themselves, living alone I certainly do, but it’s in a normal voice or I talk to the dog like he’s human.  My Dad’s behaviour is completely different – a whispered mumbling steady stream of chatter the second he leaves the room.  I caught him yesterday putting his shoes on, whispering away to himself at a hundred miles an hour yet when he realized I was there he stopped immediately.  I have no clue what this is all about though have mentioned it to the Memory Team.

He’s also now making information up.  For example, he’ll talk to his sister on the phone, often on the loud speaker so my Mum hears the conversation which is how we know he fabricates.  When I arrive he’ll tell me his sister has phoned then go on to tell me some of the facts of the conversation and some stuff he randomly just makes up.  We have no idea why he does this.  When you’re having a conversation with him he seems totally engaged and appears to have followed the topic fine but my Mum and I know he hasn’t, because if you stop the conversation mid way through and ask him to repeat what has just been said he can’t.  He makes an excuse that he didn’t hear or catch what was said but that’s not the issue – I’m not really sure what the issue is, but it’s not his hearing which is regularly checked and is OK.

My Mum has zero patience with him and gets really irate when he can’t do things or tells her information which is wrong, but my poor Dad can’t help his brain being ill any more than she can help her heart and lungs being ill.  It must be so frightening to feel isolated from conversation and to live in a world which often doesn’t make sense and he needs a structured, calm, supportive environment not her winding him up and making him even more stressed.  She should be encouraging him to develop routines if that’s what helps him cope and not demanding things of him which he clearly can’t do, such as cooking or keeping track of finances.

Some people with MCI don’t deteriorate over time but I’m fairly sure my Dad will go on to be diagnosed with full blown dementia.  In fact, when I talk about him I always say he has dementia because I know he does – the fact this isn’t currently born out by official testing is irrelevant.  It’s obvious to those close to him that his behaviour isn’t normal and he struggles hugely with some aspects of daily living, though he’s learned over time to cover this up and often does a good job, you’d only know there’s a problem if you know him well.

 

Thoughts from an old timer

My post about being clueless as to what causes disease and in particular that we can somehow eat our way better has resonated with many of you, so I thought I’d do a follow-up specifically about M.E., a disease for which there are, if you believe the world wide web, a bewildering aray of “treatments” and even “cures”, many of which are food related.

I’ve had M.E. for over twenty years and like to think I have more experience of the disease than someone who has been sick for a year or two or researchers new to the field.  In the initial phase I was so ill I nearly died.  I then spent 10 of the best years of my life in bed having seizures, puking and crawling to the toilet every day of every month of every year without remission, and the latter 14 years functional(ish) but still very poorly.  And I’m not on my own.  I have many friends who got ill at roughly the same time as me but, unlike me, are devastatingly still as sick as the day they first developed the disease.  Emaciated because they can barely eat, wasted because they can barely walk, isolated because they can barely speak.

I know that people who are currently ill think that they are the pioneers of this disease and are trying novel treatments by using oxygen chambers, drinking Kombucha tea, shovelling in probiotics, taking this drug or that drug, not eating gluten/dairy/sugar/carbs/insert-just-about-every-diet-known-to-man-here, eating worms, having enemas, drinking whale pee (just kiddin’ , in case you were wondering 😉 )………the list goes on.  But they are not.  The original ME sufferers have already been there, done that and got the t-shirt.  We have not laid in our sick bed and given up.  We have fought like cornered tigers to get better.  My parents spent over £20,000 on tests and treatments for me but none of them worked – in fact, 80% of them made me ten times worse.  Please, I beg you all, learn from our journey and stop wasting time, energy and money trying all this crap then torturing yourself with guilt because it hasn’t cured you.

Much of the research into M.E. at the moment is concentrating on fatigue and the role of energy metabolism but here’s the thing – I am not fucking tired.  I don’t know how many times I need to say it.  M.E. has nothing to do with chronic fatigue.  Nothing.  NOTHING.

When you get the flu or a really bad cold you feel absolutely wiped and barely have the energy to get to the loo.  This doesn’t mean there is a fundamental problem with your body’s mitochondria or how it uses energy from food.  It means that, for reasons as yet unknown, when our immune system is in action fatigue is a by-product.  A secondary symptom to the main event.  And so, I am utterly convinced, will be the “fatigue” associated with M.E.

I say this with such conviction because I have lived with M.E. for nearly a quarter of a century.  It started with a tummy bug, ie an immune event.  It then really took hold after gastroenteritis, an immune event.  I became severely affected following travel vaccinations, another immune event.  I saw an almost overnight remission of all my symptoms following another vaccination and these days know I’m coming down with a bug because I feel freakin’ brilliant for the 48 hours preceding it.   None of which is affected by not eating carbs or sugar, or having oxygen therapy, or taking some supplement or other, or some drug or other, nor bugger all else.  My best friend is a clinically diagnosed Coeliac, who hasn’t eaten a speck of gluten in over a decade, yet is still sick with M.E.  Another friend can barely eat and lives on an almost exclusively liquid diet, yet still has M.E.  Food is not the answer, never has been and never will be.

M.E. is an immune disease.  End of discussion.  I don’t even think it’s an auto immune disease, but an acquired immune disease.  Something external usually a vaccination or virus (the type of which is irrelevant) triggers the immune system, inbetween turning on, doing its thing and turning back off again something unknown goes wrong, and M.E. is the result.  It’s the “something unknown” bit that’s the puzzle and needs to be the focus of research.

The fact there are currently no answers is a bitter pill to swallow.  So-and-so improved after not eating sugar for six months so it has to be the cure, only of course so-and-so didn’t actually have M.E. in the first place.  Someone else discovered they had some rare infection and were cured by treating said infection, in which case they didn’t have M.E. either.  When there is no diagnostic test people are mis-diagnosed all the time, especially when some Doctors think that everyone who is “fatigued” has M.E.  And this is compounded by the fact that, until last year, severely affected sufferers weren’t included in research studies because they were, ironically, too sick to get to the Hospitals where said research was taking place.  Thank God the likes of Ron Davies has changed that outrageous situation and we might finally be looking at M.E. patients and not CFS patients.

I’m not saying that people with M.E. never improve, though it is rare.  I’ve improved for no good reason I can find.  One friend improved slightly using low dose Naltrexone, while for others it had no effect or made them worse.  Jen Brea, director of Unrest, has improved a bit with her treatment, though is still wheelchair bound and struggles to talk for long periods.  But none of us are cured and most of my friends have seen no improvement over the decades at all, despite trying every ‘treatment’ known to mankind.

I know I’m kind’ve wasting my energy writing this post, because anyone with M.E. reading it thinks that they will be the one that is the exception to the rule.  They will find the cure that the millions of sufferers that have gone before them haven’t.  So I’ll wish them luck and say I’ll see them on the other side of their journey, still sick, financially poorer, even more exhausted but wiser and finally at a place of peace and acceptance.