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Wednesday 27 February 2013


The cancer is not terminal.

Just saying.

How does your garden grow?

Having "discovered" Ute Frith this week,  I am immersed in gardens and autism, nature and nurture and misplaced guilt.

This is Eating Disorders Awareness Week in the U.S. and the social networks have been rumbling with articles and statements.

There was the brilliant article in ABC but The Fairy Blogmother was not quite as euphoric as I was about it.  It shows how much parent advocacy has moved on when L is able to challenge NEDA on core principles and receive backing from one of the greatest patient advocates in the U.S.  The iceberg of "parent blaming" is melting, so very slowly, but melting all the same.

So where is the gardening coming in?

The illness is biological, but the triggers are social: trauma, divorce, even a throw-away comment like, "Aren't you a chubby little girl," said Grefe. "You are born with the gun, but life is the trigger -- and there are a lot of them."

"But, but, but," I hear parents protesting all over the world.  "I have two children, or twins, or triplets and I have tried to treat each the same and and and one is fine and the other has an eating disorder.  How do you explain that?"

Here's how I see it.  Maybe, one of my children is a rose.  That means she thrives in our temperate climate, she grows strong and vigorous in our clay soil, she likes the rain and the warm, but not scorching sun, she appreciates the compost we dig around her roots and a top dressing of pig muck is an aid to strengthen her stems, send her roots down deeper and produce top quality blooms, despite the smell.

Maybe, just maybe, my other child is a cactus.  One of those extraordinarily beautiful ones that flower every now and then.  Maybe she doesn't thrive in our temperate climate, hates the rain, never gets hot enough, yearns for sand and can only thrive on a sunny window sill, with special soil and little water.

Whatever I do and however hard I try and however many books I read and advice I Google, she is vulnerable to cold and draughts and overwatering.  However much I talk to the cactus and genuinely care for it, it is just NOT suited to our particular life garden.

I will not let the cactus die.  I will build a greenhouse and have a special heating system put in and install SAD lights and do everything within my power to see she grows and thrives and flowers.

I will nurture her.

For too long, according to Frith, the nurture part of parenting has taken centre stage.  We have been bullied and browbeaten, as parents, into taking the blame if our child does not thrive.  Nature has been ignored and we are condemned daily for leaving the door open so our cacti are in a draught.

What I cannot change is the fact that she is a Cactus.  She is more vulnerable than her Rose sister.  It is not her fault or her choice.  It is not my fault either.   

We all have to learn to adapt.  We have to remember to pay the heating bill and repot the cactus.  The cactus has to learn that the odd draught won't kill her but may be very uncomfortable for a while.  

We can grow cacti here, in special conditions.  They are not as easy to grow as roses but they can thrive.  What Cacti don't need to be told is that this is somehow their fault.  Nor do we parents need to be admonished for having a cactus, instead of a rose.

Tuesday 26 February 2013

Be a Pro not a Dufus

The wonderful Irish Up has written the article below and has let me share it.  It is useful for ALL areas of scientific research.

Sometimes I feel like a lot of us feel overwhelmed, bewildered, or just plain turned off by the debates around EDs, Evidence Based Medicine, different therapies & treatments, and all the research and data we throw around this joint. In a good way! Even if sometimes our passions make the discussions contentious, *that* the discussions are happening is very valuable, IMHO. But I think they could be even *more* valuable.

What I'd like to do on this thread is give readers a practical tutorial with the following goals:
  • Explain the basics of medical research;
  • Explain the relationship between research and the practice of medicine;
  • Give readers the tools to critique Mainstream Media (MSM) reporting of primary research;
  • Give readers the tools to evaluate a primary research paper for their own understanding.
On FEAST-ED, and here on the Forum, there is a lot of focus on Evidence Based Medicine and "The Research". Some might have a vision of a world where all ED research was well designed with clear outcomes that are plainly explained, and these would form a pool of data - evidence - that would lead to uniformly effective treatment. And that would be swell, but that is not the world we live in.

The truth is that no research is perfect, some research is poorly designed or executed, and no treatment for any disease or condition is uniformly effective. We think of Medicine as a Science. It is NOT, it is an Art that is *informed* by science. And actually, it's a GOOD thing that Medicine does not rely 100% on science - it would be bad if a discipline as complicated and encompassing as Medicine had to wait for and rely on only one source of information. That said, the science behind Medicine is REALLY IMPORTANT!


Step 1: Understanding Medical Research -Different Kinds of Research Give You Different Kinds of Information.

The first thing is to understand that the "knowledge base" of medicine comes from many sources. Each of these has strengths and weaknesses. The FIRST thing to do when you are looking at a piece of research is to identify which category it falls under. Then you have an idea of what kind of information the study design is good at getting, and what the limitations are. This is by no means exhaustive, but it's a good starting point :

  1. Primary bench science: this would be the kind of experiments NOT run on people at all, but more like the stuff most of us did in biology or chemistry in school. This would include experiments on animals.
    • Pros: Valuable for understanding basic mechanisms, lots of control over conditions, you can easily repeat what was done.
    • Cons: hard to know how well what happens in a lab will match what happens in a real live human being, lab conditions do not replicate real world conditions very well.
  2. Case reports details a single patient or small series of patients. These describe what the patient(s) showed up complaining of, their medical history, physical exam, symptoms, the treatment(s) administered and the outcome of the patient. Prior to formally applying the Scientific Method to medical research, Case reports comprised the bulk of medical knowledge. They are still extremely valuable for detailing rare diseases and conditions,novel treatments, unusual outcomes, or other anomolous or singular patient care events.
    • Pros: Pretty much the only way to study rare or singular events, good for descriptive purposes.
    • Cons: very small numbers, not repeatable, hard to know how generalizable (how applicable to another person or situation) the results or findings are.
  3. Observational studies which involve no "experimental" manipulation of patients in any way, but rely on identifying a set of patients with some shared quality - a diagnosis, an exposure, a treatment, an outcome - and either looking back in time to see what happened to them before the diagnosis/treatment/outcome of interested (in a retrospective study design) or forward to see what happens AFTER your event of interest (a prospective design). The important part here is that you aren't changing anything that happened or will happen to the people you are studying.
    • Pros: Inexpensive to do, easier to get large numbers, the study is already looking at "real life" situations, low risks to study participants.
    • Cons: Can't control all of the conditions, can only show relationships but CANNOT show which thing causes what, can be hard to replicate. 
  4. Randomized, controlled, clinical trials which involve carefully selecting people to get a treatment of your specific design. RCTs involve active participation from the subjects because you are deliberately manipulating what happens to them. Also very important: The treatments administered in RCTs have the PRIMARY GOAL of benefiting OTHER people! Now, the risks to the patient have to be acceptable - you can't do something worse to a person than what would happen if they *weren't* in your study. But since you're conducting an experiment, you don't KNOW if you're doing anything better, so really, the people who get the MOST benefit from an RCT are the people who get treatments that come AFTER the results of the study are known.
    • Pros: You can control conditions and participants so you don't have contamination from unknown sources. You can "prove" causality. Easy to duplicate
    • Cons: Expensive, study participation limits can limit generalizability.
RCTs are called the "Gold Standard of Proof". What that means is that RCTs are the only experimental design that gives you live people getting real treatments or exposures in such a way that you can *show* that what you did CAUSED the findings you observed.

BUT! Not every problem can be investigated with an RCT. And you DON"T need an RCT if the preponderance of evidence reaches a certain tipping point. Real life example:
 - Smoking has never been "proven" to cause lung cancer in humans. This is because it would be unethical to design a study where you make one group smoke. The preponderance of the evidence from primary bench science, animal studies, and observational human studies is that smoking *does* cause lung cancer. This did not stop scientists in the employ of tobacco companies from loudly proclaiming that the connection wasn't "proven" for decades. They were technically right, but ethically reprehensible.

The other issue is that RCTs participants are often very unlike the larger group of people who would get the treatment, and that the treatment is administered under ideal, and not real world conditions. Because RCTs can be very small in terms of numbers of participants, it can be hard to get detailed data about subgroups of patients - men vs. women, responders vs. not responders, that kind of thing.

So, take home of part 1: When reading a report about research, look for what kind of study it was. Think about the plusses and minuses of that kind of study. Then look at the results being reported and see what kind of "yeah but" (or caveat) might apply.

For further interesting comment, please read the italics that Carrie has added on her blog and/or follow the thread on the forum

Monday 25 February 2013

Why can't all articles be this well written?

A great article and a brave mother.  Thank you to all who contributed.

Plumping up the self-esteem

"if I were in your shoes I would get my car keys and be halfway to Portland" 

A random piece of advice given to a stranger two years ago.  I could sense the desperation and the urgency of her situation.  Phrasing my advice so that it is not "do this now" but more of a gentle (dolphin-like?) nudge towards help, is something that took me some time to master but I was obviously getting the hang of it 18 months into this advocacy lark.

This mother did make the 3,000 mile trip where "Dr O'Toole and the staff at Kartini made an urgent, terrifying experience manageable."

The pleasure is entirely mine, TTP and I am so grateful to hear your lovely voice and your praise at a time when "nadir" doesn't even begin to describe how I am feeling.

To then win an OMMscar (Outstanding Contribution Award) was the icing on the cake.

Sunday 24 February 2013

Growing up too tall

So here I go again.  Another bout of breast cancer to be fought.  This time I go in better prepared and more determined and twice as frightened as last time.

However, this time I am seriously angry.  I am angry that it is back.  I am angry at the effect it is having on my family.  I am angry at the waste of time and energy that it is going to take to fight it and I am livid, incandescent, fuming and spitting tacks about losing my hair again.

There, I've said it.  I really mind about losing my hair.  I am not a vain person so it is not how I look that bothers me.  It is just that it is the FINAL STRAW.

Well, not quite perhaps.  The FS came quite early this time.  It came when I was weighed before my operation.  My BMI was calculate at 24.9 and I was told I was in the overweight category.


So I started on a long rant.  Firstly at 5ft 11 (and a smidge), I was well outside the average height range and that BMI is an area, not a volume, measurement and that 24.9 was in the "normal" weight range anyway so what on earth was the (beleaguered, overworked, underpaid) nurse doing saying this to me?  Words like "population screen", "average" "non-clincial measure" flew like Harry Potter spells from my (by then) forked tongue and a red mist of righteous indignation filled Ward F5 ("Surgical").

Now, I know this was not the nurse's fault.  But heck and tarnation, what is the world coming to that our clinicians are so ill-informed?  Why, oh why, have we fallen into this trap of using the BMI calculator as a measure of health in clinical settings?  How many pieces can I shred the "healthy eating" leaflet into?  (Apparently, everyone who is overweight is given a healthy eating plan and No, just because I don't think I am overweight, does not mean I don't get one.  The computer says I am overweight and I therefore need to read the leaflet carefully, take more exercise and make sure I eat 5 portions of fruit and veg a day).


However, I have found a new BMI calculator website which seems to take height differences into account.  Even when I added 20lbs to my actual weight and came out with a BMI of 27.2, it told me that this was within the normal weight range for someone OF MY HEIGHT.

Hurrah.  At last a non-tallist BMI calculator.  Perhaps I should recommend it to the NHS?

I am...

If you only do one thing today, please read Onemoremum's blog and share it.

We need more people like her to speak out and we need to make sure that, when they do, we are here, in numbers, agreeing and supporting.

We need to make sure that people within the NHS system are aware we are watching the outcome of this.

We need Onemoremum to know that she is not alone.

We need to get behind her, so that more people can speak out.

We need to patch up and fix the disconnect between the Mental Health and the Other Health services.

In short, we all need to be Spartacus.

Friday 8 February 2013

If only they were raindrops

So HWISO decided to mend the faulty emersion heater this morning.  Hence the new (brackish brown) crack in the office ceiling and the emergency evacuation of my desk at 10.04 am this morning.

Friday 1 February 2013

Step Back

We all know about wicked stepmothers - fairy tales and urban myths abound.  There is inevitably a backlash and no bad thing, in my opinion.

As a child of a blended family, awkward relationships and expressing gratitude that one did not feel, especially as a troubled teen, were part and parcel of gingerly finding a footing across the rotting bridge from childhood to adulthood, through the maelstrom that is adolescence.

My mother "lived in sin" with my stepfather for 2 or so years in the late '60s but, to avoid scandal they self-styled themselves as Mr & Mrs, until they slipped away in 1969 to tie the knot officially.

It was not a happy marriage.  What marriage is?  Mum, being 15 years his junior, with a love of parties and a sparkling personality was the perfect foil to his more rigid Edwardian attitudes and I remember there being lots of parties and socialising and endless, endless going to the races.  My stepfather loved the horses and was not bothered whether it was the Royal Meeting at Ascot or the local point-to-point.  They had moved to Suffolk and quickly made friends with a younger crowd, who had similar aged children to me.

My stepfather was 53 when he took on my brothers and I, aged 9, 7 and 2 (hence the gratitude).  My brothers were away at prep school and I left home to go to prep school 2 months after my 7th birthday.  I think that it was a relief to be away, for all of us because, as much as we loved Mum, the mercurial nature of someone who has been in the war and, looking back, probably had undiagnosed PTSD, who was a little overfond of the whisky bottle made tiptoeing on eggshells seem like a walk in the park.

However, we all grew up with good manners, a defined sense of right and wrong and a firm bond - nobody messes with my siblings - that has seen us all through good times and bad.

He had had his own children, born in the War (WWII), 3 sons whom he financed them through school and sent on their way.  His eldest son went into his mother's family cork importing business and his other son went Cirencester and thence into agriculture, namely as a grain merchant.  Of the third son, there was no mention and I still have no idea to this day what he did.  I do know he died young (1944 - 1992) and was homosexual.  I remember various friends and family saying that it had not been a happy childhood for any of them.

However, my mother and my stepfather persisted and remained married, until his death in 2005, aged 90 3/4, in his bed at home, swiftly and suddenly from a heart attack.  My mother had nursed him, single handedly, for the previous five years and intensively (he was bed bound and incontinent) for the final six months.

He left all his worldly goods in a Trust for my mother and then on to his sons and grandchildren.  It was an awkward transition for Mum and she remained homeless for some 18 months between the selling of their home and her finding a new smaller house (the "hovel" as she called it) that she would be happy to live in for the rest of her days.

So why am I telling you all this?  Well, despite 35 years of marriage, 5 years of nursing (saving a fortune on nursing home fees?) and many compromises along the way, my stepbrother obviously never got over the Cinderella feeling.

Five hours (yes hours!) after my mother died (and two hours after the undertakers had left with her), an unsuspecting estate agent knocked on the door with instructions from my stepbrother to value the house.