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.

protected by Tami who?

2406bubble

Roche is in the spotlight for its questionable business practices regarding Tamiflu

I believe the most recent scandal from the pharmaceutical corner of the rampant capitalism boxing ring is being amply represented by Roche and its unwillingness to share data on the effectiveness of its antiviral Tamiflu.

Governments around the world have been encouraged over the last four years to buy stockpiles of this drug to protect its citizens from a possibly very likely flu epidemic.

This can only be good news as we all (both well and ill) get a taste of the general crookedness of those who claim to care but only appear to really care about their shareholders.

Taken from bbc page last year “In response Roche has appointed a four man panel headed by flu expert Prof Albert (Ab) Osterhaus to look at data on Tamiflu which the company says will “identify unanswered questions”.
A flu czar?

He headed up that four man panel very effectively (this is where the written word misses something the spoken word can deliver in spades – sarcasm.

The four panellists of the virologist. It sounds like a production that could have a Michael Nyman composed, writhing and portentous soundtrack. It should be a play, Shakespearean in ambition, carried out in modern dress (wide pinstripe suits with a number of variously grey striped shirts). The play’s plot involves thoroughly underhand business behaviour on a global healthcare stage.

I wish I’d paid more attention in English at school or had been taught the classics.
Here’s some meat for the second act.

Pharma companies never promised tohelp us feel protecte… they really do appear to be all out to get us!

Thanks very much Ben Goldacre for pointing towards www.alltrials.net. Goldacre did a nice intro for a book Sir Iain Chalmers had a hand in creating Testing Treatments (he was the one who saw the need for objective studies of trial data and helped set up the Cochrane Collaboration who carry out meta-analyses of robust trial results).

I very much hope this scandal has swelled the alltrial’s number of signatures.

keepin’ it real?

real prosthetic
real flesh

This you tube clip is the reason I’ve had issues with my caregivers. the clip shows a man who traditionally would be wearing a white coat talking about other men in white coats’ ‘waste of time and resources’ research.

I guess one of the problems I have is that I’ve been led to believe that the way science works is someone puts forward a theory – people disagree with that theory but need to prove it to be otherwise by performing tests.

Somehow or other this chain of events leading to useful treatments has stalled, leaving MS patients with a choice of treatments which are not worth writing home about.

I didn’t know this 15 years ago. At the time, in my 20s, I just figured that a treatment that involved multiweekly injections with a less than 50/50 chance of working wasn’t for me.

The only experience I’d had at the time, of thinking about chance and risk was putting my once a year flutter on the Grand National  “It’s all a bit of a giggle (probably not for the horse or rider) just go for it because, what are you losing?” (I rarely put more than £5 on). Taking a gamble on the horses coupled with my willingness to take an analgesic if i had a headache (the only time popping a pill hadn’t worked for me I was having what I found out a year later, was the beginnings of my first attack of optic neuritis).

As time has gone on I’ve had waverings of doubt about my decision to avoid these treatments but, on the whole, I kept being fairly sure what had been happening infrequently to my body didn’t suit the treatments that have been developed.

20 years later I have secondary progressive MS but the data shows if I’d been taking one of the treatments there’d be no guarantee that I wouldn’t be in exactly the same place.  I’m going to this talk tonight about understanding coincidence and understanding the data from clinical trials, I hope my booking the event isn’t just an example of wanting to revel in confirmation bias!

The NHS would be not far off £100,000 worse off and I’d perhaps have injection scars and have experienced something like flu a lot more than I have.

Professor George Ebers’s thoughts on MS trial design are summarised here and he was invited on to guest post on a site I figure is worth a read now and then as ‘mousedoctor’ replies to some questions and comments I may post which represent some of the most meaningful exchanges I feel I’ve had with the men in white coats throughout my long MS career to date.

During my illustrious MS career I’ve found dealing with stress is one of the most effective ways of managing my symptoms. These folk have looked into the theory. Get to bed earlier is one of the best pieces of advice I’ve heard from a circadian expert giving a TED talk on the role of sleep. He was on the telly talking about animals at the zoo and looking at their sleep – I guess we’re all just animals at the end of the day.

is it a bird, is it a plane or … superman? The perils of indistinct MS research

 

a herd of elephants
with a chronic condition sometimes you can feel alone.

MS appears to be smothered in mystery.

Given a name over 150 years ago but still can’t decide what causes it or arguably, precisely define it.

It’s almost as if it’s in noone’s interests to pin it down.

It’s very easy to become bitter and cynical when you have a diagnosis of a condition that makes lots of money (for shareholders) in providing treatment

s. I was pointed toward this study by US family and I can’t help but cynically wonder firstly:

Are the pharmacos purposefully muddying the ‘what’s the cause’ field to keep it wide open for further drug development?

Are they angling to develop more treatments that are only partly effective?

Or are the Researchers at Weill Cornell Medical College just seeking further funding streams for their favourite area of research by tacking the label MS to their research and hoping a big hitter in the MS market will throw money in their direction?

Perhaps this is just the way that science works? (answers on a postcard please).
“If the link with MS is proven, it’s possible that a vaccine or drug or probiotic treatment could be developed to destroy the C. perfringens B and D bacteria, which make the toxin, Vartanian has said.”

We need to fight our own corner we, who own a chronic condition as it seems the folk in white coats that we’ve been brought up to have absolute faith in aren’t as omnipotent as we’ve believed.

Chronic conditions appear to light up the eyes of pharmaceutical companies and they see a steady income stream in treating us chronics. We become more attractive in the wider field of healthcare when viewed through dollar goggles!

“I do acupuncture every couple of weeks. I stopped when i couldn’t drive for 6 weeks. 
I couldn’t put my finger on differences but, I think my body feels less creaky and immobile – a session seems to stop blockages/improves flow as does CStherapy which i do on the other weeks.
I know that makes me sound like a hippy talking about flow but there’s more involved in our bodies functioning optimally than the West has been able to work out… give it a go.

I can see why modern medicine shies away from treating a condition  whose state couldn’t be put a finger on by its owner but, it leaves me feeling there’s an awful lot we STILL don’t know.

Let’s acknowledge that and try finding out more which, I guess is what Cornell are up to but as an owner of a chronic condition i believe there are more fruitful areas of research…

Let’s go back to the 19th century where it was spotted in dead MS’d brains that there was a vein running through each piece of damage. Imagine what we could spot with the technology at our fingertips nowadays?

The Chinese knew about blood circulation over 5,000 years ago.  in Europe, William Harvey discovered it in the 1600s.”

There are an awful lot of ifs and coulds in the Cornell work.

Perhaps they’re a shoe in for further MS research!