Horses greater than zebras?

zebra in the crowd

It was in the news today, in the Independant that Britain is woefully under represented by scientists and mathematicians. We seem to have a greater number of media studies graduates.

The winner of a third of the Nobel Prize of physiology and/or Medicine, Randy Shekman, (received in December 2013) has announced his lab will no longer put forward papers to a number of “luxuryjournals” such as Cell, Nature and Science as he believes their processes are no longer about the joy of finding stuff out but have been instead featuring sponsored adverts for various pharmaceutical companies (allegedly).

Fiona Godlee, editor of the British Medical Journal (BMJ) said “We have a situation where research has been put to use for marketing purposes, rather than for science”.

She also talks about science to the House of Commons where, out of the 600ish MPs, there’s only one scientist. Speaking as a patient who hopefully might eventually benefit from the doing of science I’m in full agreement with the Nobel prizewinner and the editor.

From my end of the telescope it feels like there’s not alot of innovative science being done in my condition. It feels a bit like Alzheimers and Type III diabetes/lifestyle instigated dementia have grabbed the research dollar as dementia seems to have become the new cancer – we’re frightened it might happen to us or it’s happening to our grand/parents already.

I appreciate the absence of a grasp of the finer points of this argument could be because I don’t have a career in this area so, of course I won’t be up to date with what’s happening in the field. But I’m also reminded of the statin prescribing debacle which Ms Godlee was almost at the centre of. I’m sure 10 or more years ago there was talk of groundbreaking research that could shine a light on various degenerative brain disorders including alzheimers and MS but we don’t seem to represent a big enough market share although some drug companies have done very well out of somewhat effectually treating us and so research gets paid for the larger patient group/biggest earners.

Does that make me sound bitter?


It should.

Sometimes it feels like some marketing men and MS researchers need to be reminded that denial isn’t just a river in Africa.

“Denial is defined as knowing that something exists, but deliberately refusing to acknowledge it for ulterior motives.”


Serving as a full stop to this post I’d like to give three cheers to alltrials.

if any of us have ever taken a medication or figure we or loved ones might do in the future we need to make sure we sign this 

half of all trials undertaken aren’t reported.

Not trying to be a stickler/kiljoy/pedant but before we hope for better treatments let’s get a true picture of what’s already on the table.

NHS is tiptop… and not!

one step at a time
light at the end of the stair

This just released: The UK’s National Health Service is tiptop and beats many other nations’ healthcare of and for its citizens. This is fantastic news but not necessarily surprising that we do better than the US who spends more on its health service and still turns people away at their hospital door with no offer of care.

The Commonwealth Fund, a Washington-based foundation which is respected around the world came to its conclusions after studying 11 healthcare systems from around the developed world. Only New Zealand (£1876) spent less per citizen than the UK (£2,008). The US spent just over £5000 per capita.

One area the NHS features almost last in the rankings is care of the chronically ill.

This may not come as a surprise to anyone with a chronic condition in the UK!

The NHS are winning as long as we, its citizens aren’t dying.

The quality of those lives being lived aren’t really taken into consideration so looking after yourself is sometimes the safest or only position to take. Finding alternatives to side effect laden pharmaceutical treatments which often offer only marginal benefits is what 21st century healthcare has begun to be about.

A few years ago I took a self-management course in ‘Long term Health Conditions’ with EPPCIC which I found invaluable. My fellow students on the 6 week course of 2 and a half hours a week included an MS patient, a lady with COPD, someone with type II diabetes and  a selection of rheumatism and arthritises. Attending the course is normally arranged by a gp but it was also possible to refer yourself.

I’ve found taking control of an aspect of my life to be really (apologies in advance) empowering.

I now attend and have become a trustee of the Huntingdon, Peterborough and Cambridge MS Therapy Centre. I get sessions in their hyperbaric chamber and breathe oxygen for an hour. Breathing 100% O2 at pressure saturates the tissues in the body which brings a host of benefits. Australia and the USA are aware of its healing capabilities and their athletes and sportsmen take some oxygen sessions if they have a broken limb and want to speed its recovery or just to boost their performance.

Finding any small benefit often using an alternativce therapy is a huge win for anyone with a chronic condition.

Inflammation? Oohh Matron!


garlic's good for you.
garlic has many and varied benefits not just its vampiric connections!

ms* was described as an autoimmune disorder on wikipedia and then a few years ago it was changed to an inflammatory disease. I’m not holding wikipedia up as the fount of all knowledge but yes ms, parkinsons and alzheimers all have a degree of neurodegeneration perhaps brought on by swelling in the brain (not necessarily of the entire brain).

Our lesions, if they were visible would look like swollen, red areas you’d get around a cut on your skin. This swelling is the body’s ‘soldiers’ standing about and making sure no infection takes hold. Glial cells provide support to neurons which send and receive the messages that control our body’s functioning.

There are four members of the glial family: microglia, astrocytes, myelin and oligodendrocytes which create a structural framework for neurons, they maintain homoeostasis and offer protection from harmful bacteria and drugs. They either clear up damaged cells or, having gone rogue they mistakenly nibble bits off myelin (like pipe lagging around nerves) causing a neuron’s messages to get mangled.

Whatever your preferred belief system, inflammation is present in both the vascular injury model of ms (with us through postmortem studies since the mid 19th century) and the autoimmune model that has held sway since the 1920s (which coincidentally is when drug companies began their inexorable march to world domination). Theories seem to be changing and it’s worth looking into a few of them so at least you can talk with your caregivers rather than just being talked to.

All human’s brains shrink over time, msers especially (and to some extent those on the way to becoming type II diabetics, Alzheimers has been dubbed Type III Diabetes by some in the medical profession). It certainly seems an awareness of what we eat can’t do any harm as there are some changes we can make to our daily lives that could have an impact on the day to day functioning of our brains.

About 8% of our brain is made up of stem cells so yes, brain cells do have the potential to regenerate and in healthy brains there is a constant turnover of these glial cells which are created as, where and when they’re needed.

As the brain is approximately 50/50 fat and water (more like 60;40 but i can’t remember which way round) how we choose to consume both fat and water can make a real difference. There are lots of resources online to suggest ways of ingesting fats that your brain would appreciate but it also seems to be about what we choose NOT to eat that can help here. Our bodies have little need of pastry, bread, pasta or biscuits.

Blood sugar imbalances brought about by too many carbohydrates over many years in the diet (which turn into sugars in the blood) which eventually fuel our muscles and brain need to be paid attention to.

Avocados are a pretty good food for us and keeps our brains happy too or so I’ve been led to believe by various online resources (not just the avocado marketing board).

Too many carbs damage the brain as does too few.

All this looking after ourselves is far from straightforward!

Get with your body’s new program and look for the alternatives!

Happy googling!


*I choose to keep ms in lower case as it seems to have less importance to it (in my own tiny mind anyway).

Decisions for the The Long Game

DSC_2514As an owner of a chronic condition things could go better if we think of life a little differently. I don’t want to be at an increased risk of getting Alzheimers and this strategy could be a way to reduce that risk.

One thing that we definitely do have control of is what we choose to eat and not eat. There are a host of folk online who have thoughts about what, when, where, how and why we should make certain food decisions. I very much hope this site doesn’t slot into that category, as somewhere that uses the word ‘should’ alot (I’m trying not to use it on myself) so, please let me know if there’s any whiff of the preach going on here!

I spend quite a lot of time online and it’s not always cats playing pianos, although there is a bit of that. What we choose to fuel ourselves with can’t NOT have an effect on our output.

When we have a certain amount of degeneration on the cards any and all slight wins are vital but “my leg doesn’t drag as much” sounds very like a lack of success to the fit and healthy.

There’s always going to be a mismatch between the outlook of both groups of people but if you can tread a path through what consultants say and what you feel then you’re winning!

Check back to see what’s caught my eye recently (this is just as likely to be something about cats and pianos as it is a recent study on nutrition or exercise).

All Clear Above and Behind… I have control.

sky at the end of a summer's day
finding control

I used to go gliding when I was younger; the end of the title of this post is the response of a trainee glider pilot given in answer to their instructor’s statement at the beginning of the title so the instructor knows you are aware and conscious and ready to take hold of the controls.

It felt unnatural at first: being catapaulted up into the air from the ground or getting towed into the sky behind an engined plane. When the cable gets released both methods involve being left hanging in mid air. The first realisation that there is no safety net is a bit the way I felt when I read about the condition (MS) I’d been recently diagnosed with.

We’ve received some news we’d rather not have.

But it’s here, what to do with it now?

I believe we have an awful lot of choices available to us in life, perhaps slightly fewer if we’re incarcerated. A failing, unreliable body isn’t quite incarceration, although, occasionally, it will feel that way.

Perhaps you’ve ended up here after looking for a definition of what a chronic condition is and what can be done about it?

We all make choices every day, the language we use to refer to those choices I think is very powerful and if we’re not careful, can become counter-productive. I don’t believe it’s healthy to talk about ‘fighting a battle’ and thinking of our bodies as a battleground, an inhospitable, dangerous environment. It seems to have become a scarily common description of illness generally, it perhaps suits some situations but far from most.

I and many others like me with a chronic diagnosis under their belts are very lucky and instead, we own a condition that isn’t on the verge of killing us. I think the battle analogy to describe illness most often gets applied by those whose bodies can generally be relied on and if the well think of illness it’s the sort that is acute or terminal. It certainly doesn’t appear to be the chronic, invisible sort.

Our bodies on the other hand are into this predicament for the long game, our conditions are chronic which means, on the whole, they aren’t deadly (there’s a debate to be had here but basically we’re not in imminent danger of croaking). Our bodies could do with some gentle encouragement to perform as best they can.

Having a chronic condition gives us the time to learn to communicate better within ourselves. It seems (broad generalisation here) society has not been listening much up to this point to the collection of chemical processes, skin and bones that carry them around all day.

We need to learn to cosy up, coax and persuade rather than stick our fingers in our ears and ignore the many messages our body sends every day employing any number of analgesics, social anaesthetics or purely symptom addressing pharmaceuticals.

We need to become dancers, willing to listen to our partners, our bodies a little better. This analogy works much better for me than being told to be like a foot soldier. Perhaps we need to think of ourselves also as creative managers?

The term ‘management’ I think is taking up a different space in this day and age. It used to carry regrettable connotations that conjured up images of unneeded and ineffective middle managers who don’t listen to their workforce and in turn aren’t listened to.

On a bad day managing my disease can feel a bit like how I imagine the deckchair manager may have felt in the last minutes before the Titanic sank – pretty useless and surplus to requirements.

On bad days I feel like my body is listing and yawing on stormy seas and no matter what I do I can’t stop it failing to find its comfort zone, it’s sweet spot. Those are the days I try and arrange not to force or test it.

It’s very different on good days. I can focus on the things I’m choosing to do that cause my life to feel better.

Whether, by the numbers, it actually IS any better (like a reduction in symptoms) is unimportant. How we feel about our condition and ourselves is ultimately, the only thing we definitely have control over.

Our state of mind is a mighty big thing!

thanks for your time so far. I’ll try to keep the posts a manageable length as I appreciate none of us like to squander our time. This occasional journal is a place for me to note my responses to various things around me, I hope they might interest more than just me!

The Meaning of Success is… empathy?

laundry heights
how do we define success?

Reflections on an event held in the West Road Concert Hall at Cambridge University (UK) on the 5th march, 2014. Released next to International Women’s Day events: a book launch looking at successful women employees of the organisation.

The Meaning of Success

It seemed the thing that brought all these women through their careers to the point where they could be highly regarded by their peers was great support from parents, children, partners, friends and colleagues.

Members of the university staff were asked to name who they thought were the successful women in their particular CU sphere. The final 26 women shortlisted couldn’t have achieved what they did, by their own admission, without the support of individuals around them so maybe emotional intelligence really needs to be highlighted as one of the things most likely to further a person’s career?

I tried talking with a friend’s son whilst filling in the childminding gaps during his final, pre-school year ‘Be nice to people because people might be more likely to be nice to you.’ Being nice to people in the hope they’ll be nice back did not appear to come naturally to a boy with an older brother!

Which makes me wonder when precisely altruism kicks in? Do we need to have the capacity for empathy before it can start?

This may well be the subject for another blog post perhaps wondering at the same time why the medical professionals I’ve come into contact with appear to have a seemingly poorly developed capacity for empathy.

This is strange as you’d imagine any careers along the caring spectrum would have altruism at their heart?

Altruism is thought to be evolutionarily advantageous if you look out for others in your group others in your group may well look out for you. It could be argued that this trait works best when society behaves towards each other in the same way.

Society starts to feel uneven when individuals seem to stop receiving broadly similar treatment. Members of a society can hardly be expected to continue along their original path, no matter how evolutionarily advantageous it could have been.

How does this fit with the general theme of this blog and website?

My next entry I’m planning to make about gluten free brownies as a friend of a friend was asking for more details when I mentioned them elsewhere online.

I think being nice to people in the hope that other people will also subscribe to your way of thinking and might be nice to you at some future date is what I hope this blog will help to happen.

Chronic Alternatives is the name I’ve given to a site that I hope will become a ‘go to’ place for people wanting to live a little better. I received an MS diagnosis over 20 years ago which has given me a chance to step out of the hurly burly of day to day life. Providing me the chance to lift my head up and look around I now consider to be an immense privilege.

Before you start reaching for the sick bags that’s certainly not the way I described MS for my first 10 or so years of exposure to this chronic condition.

I see it as a good thing now because I have support around me, my husband appears to think I’m nice enough to him for him to consider me worth coming home to every evening.

Over time I’ll mention some of the therapies and therapists who have helped me and some of the mindsets I’ve found it helpful to examine.