Category Archives: Medical & treatments

Healthcare Plan

Each month the ME Association in the UK do a quick online poll on various subjects, which I personally feel are a great way to keep the Charity up to date on the experiences of their members.

Their current poll asks whether ME patients have a ‘healthcare plan’.   According to the 2007 guidelines on ME/CFS provided by NICE (the National Institute for Health & Care Excellence on whom healthcare professionals in the UK rely for information) each healthcare professional should “make a care plan with you, which is looked at and kept up to date every time you see a healthcare professional about your CFS/ME.  It should include the symptoms and history of your condition, plans of treatments and self-help techniques you may be using, information and support needs, plans for work or education, and contact details of the healthcare professionals caring for you.  Your care should be given in ways that are suitable for you. This may mean having some tests or treatments at home or getting support and advice by telephone or email.”  Dream on, is all I can say to that!

I haven’t seen a doctor about my M.E. in nine years and only saw one then because I requested it as I had long-standing, unremitting pain (which turned out to be due to undiagnosed hEDS which I ended up realizing myself after the M.E. specialist was no help whatsoever).  I haven’t seen my GP about my M.E. since that time and there is no offer of regular monitoring, despite the fact I suffer with 4 chronic diseases and am menopausal.  There is most definitely no Plan.

There is also no Plan in place to manage or monitor my hEDS and I haven’t seen anyone to do with my genetic disease in over 5 years.  No……..wait…….. that’s not strictly true.  I did realize it had been 4 years since my last bone density scan and I should be having them every 3 years, so I contacted my GP to ask to have one done and she arranged it.  I didn’t actually see her though, it was all done over the phone and wouldn’t have happened at all if I hadn’t requested it.

The situation is even worse in respect to my MCAD.  There are no specialists in the north of England, my GP has never heard of it and since my diagnosis back in 2013 I’ve just been left to get on with it.

I have to be honest, though, and say that in respect of my M.E. I wouldn’t consider a healthcare Plan anyway.  Over the past 24 years, my dealings with the NHS have been exclusively negative with huge amounts of disbelief and pushing me to do Graded Exercise despite the fact that the one time I tried it I ended up in hospital with seizures for 3 weeks and was bedridden for 2 years afterwards.  A psychologist or psychiatrist is always involved (during said 3 week hospital stay I didn’t see one immunologist or neurologist, but I did see a psychologist who told me I was anorexic and wouldn’t accept the reason I was struggling to eat was that I was too weak to chew solid food).  I’m sure my medical notes are peppered with comments about my symptoms being psychosomatic or exaggerated for attention.  In addition, there are no ‘treatments’ for M.E., so I’m not entirely sure what I’d be seeing a doctor for.  Having said all that, however, I still think someone with healthcare needs as long-standing and complex as mine should be offered a yearly check including a full blood work up, which is particularly important as one ages and becomes more prone to things like heart disease from years of inactivity.

I feel differently in respect of my hEDS and feel that a Plan would be useful.  I’d like a specialist point of contact – someone I could ring for advice on when I should be having a scan or x-rays after an injury and a check kept on the progression of my disease.  Realistically I should be able to ask my GP if I had a question, but being as though she knows about as much about hEDS as my next door neighbour she probably wouldn’t be all that helpful.

I’d absolutely love to be having my MCAD monitored and a Plan put in place for my flares or if I need to go into hospital for other things, but I know that’s pie in the sky and I’m more likely to win this weeks Lotto.

I’m not quite sure why I’ve always been completely ignored by the medical profession.  Is it because my health is too complex and doctors feel overwhelmed by everything that’s wrong with me?  Is it because I live in a rural area with no specialists?  Is it because I’ve been ill for over two decades and have tried every treatment known to man so am written off?  Probably a combination of all of the above, however I should still be being monitored and a check kept on my progress and I do feel very let down that this has never happened, not even when I was bedridden for ten years and so ill I nearly died.  If I couldn’t even get a GP to come to the house to see me then it’s no surprise I don’t see anyone now I’m less severely affected.


Supplements: the deadly truth?

1 in 3 people in the UK take a supplement of one kind or another, and those with ill health are high on the list.  The most popular supplements are multi-vitamins containing anti-oxidants closely followed by Vitamin C.  Claims range from helping stave off Alzheimer’s, Arthritis and Cancers to actually prolonging life which, if true, make them more potent than most drugs yet supplements are not regulated in the same way as drugs – in fact, they’re not regulated at all.

I watched a fascinating BBC Horizon documentary last Thursday night called ‘Vitamin Pills: Miracle or Myth’ which looked at 60 years of research into Vitamin supplements and it made for interesting, and at times worrying, viewing.  It started off by measuring the vitamins and minerals in the blood of 3 people of differing ages, sexes and diets.  One was a female student who had an addiction to Curly Fries and admitted she ate like crap.  The other was a 30-something female yoga teacher who ate a ‘healthy’ diet with loads of fresh fruit and veg and very little processed food, and the third was the reporter, a middle aged Chinese man who loved takeaways washed down with a beer.  When measured, all three had the recommended levels of vitamins and minerals in their bodies…………….well, all except the woman with the ‘healthy’ diet who was ironically lacking in iron.  For the most part we are all getting enough nutrients from our food, whatever kind of diet we follow.

There are, however, groups of people who may need supplementation.  If you are housebound or your working life means you spend hardly any time outdoors you will probably need a Vitamin D supplement.  If you are a female teenager or female adult with heavy periods you may need an iron supplement. If you are pregnant you should take a folic acid supplement,  and if you have any kind of dietary restrictions, eg. Coeliac Disease, you may need extra help.  But, on the whole, most of us are getting enough, or more than enough, vitamins and minerals from our food.  I haven’t eaten meat for 25 years yet only became deficient in iron when a) I had to change my diet due to my Histamine Intolerance and b) this coincided with heavier periods due to the peri-menopause.  All my other levels, including B12, have always been either good or excellent.

The whole ‘free radical/oxidative stress’ argument for taking anti-oxidants was started by one researcher in the 1950s.  He discovered that exercise initiated a period of oxidative stress within the body which, he assumed, was bad for us so looked at ways of counter-acting it using anti-oxidant supplements.  This snowballed over the next few decades as companies joined the band wagon and before we knew it anti-oxidants were miracle supplements which counter-acted free radical damage, staved off aging, made us look and feel younger, warded off diseases and actually prolonged our lives.  The only problem being it’s bunkum.  More recent research has shown that the oxidative stress produced by our bodies after exercise is actually needed and if we interfere with that we are actually harming ourselves!  One researcher looked back at trials from the last 50 years from all over the world and concluded that taking anti-oxidant supplements either had zero effect on disease and wellbeing or, more worryingly, actually increased mortality (one study was stopped after the mortality rate from lung cancer increased by 28% for those taking antioxidant supplements).

We’re also encouraged via persuasive marketing to buy various herbs and foods which have been condensed down into supplement form.  The programme looked at Green Tea which you can buy condensed into a pill and which, after only 3 months, gave one man liver disease so severe he needed an immediate liver transplant and is now in kidney failure – before this he was totally healthy.  Obviously this isn’t going to happen to everyone but the fact it happens at all is huge cause for concern when there is virtually no regulation on supplements and no legal obligation to make manufacturers prove the claims they make about their health effects or provide warnings of potential side effects.  One of my good friends who has had severe M.E. for decades decided to try Spatone iron water for her proven low iron levels – it led to severe GERD which has continued ever since and has left her in tortuous daily pain.  I, on the other hand, take 2 sachets a day and it’s been brilliantly helpful to me.  None of us know how we’re going to react to supplements and we aren’t warned they may have serious side effects, may interfere with medication or be contra-indicated for a disease from which we may be suffering.  Also, according to the research, if we are dieting or on restricted calories for whatever reason we may absorb more of the active ingredients of herbs and supplements and so be unwittingly taking higher than recommended doses.

I’m not anti-supplements and have benefitted hugely from taking iron and, in winter, Vitamin D but I am anti lack of evidence, regulation and monitoring.  Companies selling supplements aren’t the slightest bit interested in hearing about issues with their products, but there is a way of reporting them via the Yellow Card Scheme which is a Government run website for feedback on adverse reactions to a range of products, including drugs, herbs and homeopathic remedies.  We don’t do this enough and if the Government don’t know there’s a problem they won’t know to look into it.

The fact that simple supplements can in some cases, decrease rather than increase life span is shocking to me and just goes to prove that our bodies are mind-boglingly sophisticated entities that have kept us alive as a species for millennia without any intervention.  For most people popping a herb or supplement won’t do anything much other than produce very expensive wee, but for some they can cause untold misery or even prove fatal.  I personally don’t take anything unless my blood work shows I need to and then make sure I have regular tests to monitor any effect, which I think is doubly important when you have mast cell disease and your body may react in ways not usually seen.


Visual disturbance research

A few months ago I came across some research on Visual Snow being done in the UK by the dept for Neuroscience at King’s College in conjunction with the Eye on Vision Foundation.  I’ve talked about my severe floaters here on my blog but that’s not the only issue I have with my vision and this research, amongst other things, is looking at the correlation between various types of ‘visual aura’.

Auras are a kind of hallucination – your eyes are seeing things which simply aren’t there but trust me when I say they are all too real to you.  There are various kinds of visual aura and, as per bloody usual, I have most of them – yes, I know I’m greedy 😉


The research is focusing on Visual Snow, which is a hallucination which looks just like the name suggests – falling snow or moving white noise.  Luckily for me mine is only  mild and I only really notice it in low light against dark objects and if I concentrate on it, but for some people it is hugely debilitating and they spend their whole lives trying to see past the bits.  Mine is white snow but for other people it’s multi-coloured.  Here is what mine looks like against a black background (you will have to concentrate for a few seconds on the black square for the snow to become visible):


I noticed this for the first time earlier on this year and it totally freaked me out.  It was a lovely, sunny spring day and my friend and I were sitting down by the river.  I lay back on the grass to gaze up at the blue sky……….and saw dozens of white flashing wriggy dots that looked a bit like small worms!  My initial thought was that I had a parasite in my blood and the second thought was that my retina had become detached, something those with Ehlers-Danlos Syndrome are prone to, but luckily I was only at the hospital the day before with my floaters and had had a thorough eye exam so knew my retina were actually fine.  I came home and went on Google only to discover Blue Field Entopic Phenomenon – what I was seeing were leukocytes moving in the capillaries of my retina.  I only have BFEP when I look up to a bright blue sky and mine looks something like this – the white dots really are very bright and sparkly:


I’ve talked about my floaters before here on my blog.  Floaters are caused by the vitreous gel inside the eye which is clumping together and causing a shadow to be cast on the retina, although I can weirdly even see them when I have my eyes closed and it’s dark.  Like all shadows they are blurry and if there are large or numerous floaters this can cause problems with vision.  Here is what my eyesight looks like due to floaters – they drive me absolutely and utterly insane:

The scary thing is that there is currently zero research being done on floaters.  None.  Yet they dominate my life, have left me feeling depressed, cause severe eye strain and headaches, make me feel dizzy and disorientated due to the blur they place on my vision and have made what used to be pleasurable hobbies, like my photography and reading, difficult at best and impossible at worst 😦


I started with aura migraines in my late teens and have been having them ever since.  The hallucination usually starts off as a small flashing light in the periphery of my vision which you can see in the first picture but within minutes covers most of my sight.  They can happen at any time and have frequently woken me from sleep – I actually dream I have flashing lights and wake up suddenly in the wee small hours to find the lights are real and I’m starting with a migraine.  I don’t have head pain with aura migraines (unlike my common migraines which are excruciating) but they do make me feel spaced out.  When you read about aura migraines the blurb usually says they only last a few minutes but mine can last anything up to an hour or even longer unless I can manage to lie down with my eyes shut in a dark, quiet room or eat some carbs, something like a slice of toast is good.  Apologies for the poor second image – it’s the best I can do, but my actual aura is like having a kaleidoscope in my eyes!

Alongside these visual disturbances I also suffer from other sight problems, including:

  • Light sensitivity (which, when my ME was severe, was like living with a firework display in my brain 24/7, even with my eyes shut)
  • Difficulty seeing in low light
  • Halos round lights at night – particularly bad when driving
  • And related symptoms like tinnitus and headaches.

There has to be a correlation between all these symptoms – when you have one it’s much more likely you’ll have some, or all, of the others and I for one am desperate for answers and treatment to be found, particularly for my floaters.  It will be just my luck, though, that the treatment will involve some drug or other which I won’t be able to take because as you know my mast cell disease causes me to have anaphylaxis to just about every medication known to man :-/  However, in taking part in this research I hope I’m helping towards the understanding of these conditions and that people in the future won’t have to suffer in the way I do.

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  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………… which time his bowel could be damaged forever?  I am so confused and honestly have no clue what to do.



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.