evidence shmevidence

Ben Goldacre started off not even deigning to consider anything that wasn't gold standard tested (double blind placebo controlled) but with the introduction of the Cochrane Reviews http://www.cochrane.org/cochrane-reviews which, on the one hand shines a light onto the drug development merry-go-round whilst on the other provides useful, globally large comparisons for a potential patient investigating their treatment.

The james Lind Alliance http://www.lindalliance.org/ allows patients and care givers a say in what they'd like to be able to choose healthcare-wise and how to get it provided. 

I think BG's starting to see that one way of looking at things isn't healthy whether you're looking at homeopathy or pharmaceuticals. After all, you need more than two points of view to be able to see 3D.

I wouldn't mind if he wrote more like he spoke or would consider employing a (better?) ghostwriter - it doesn't necessarily have to be such a secret and shameful exercise. After all he trained to fix not entertain people. You could argue that it's just another example of a member of the medical profession having no thought for their end user by not posing the question what my readers might like to read!

ignore me, i was reading Kurt Vonnegut's 8 rules for writing yesterday and it involved considering that if people are to read your story you're taking up the time of a complete stranger and so you'd better make it worth their while.

http://en.wikipedia.org/w/index.php?title=Multiple_sclerosis&action=history

There's evidence of lots of changes to the definition/explanation of MS on wikipedia around July-time of this year; autoimmune has been taken off - according to wikipedia (the fountain of most of my knowledge) MS is now primarily a disease of inflammation. 
i don't know what these changes coincide with. It's very easy to be a conspiracy theorist when you're inexorably signed up to the focus of a cash cow.

A drug is being developed at the moment that is to address neuroinflammation in parkinson's, alzhemers and MS http://www.eurekalert.org/pub_releases/2012-07/nu-ndc072312.php. It can contribute to MS fatigue holding so many conspiracy theories in your head at once!

"Currently there is not enough evidence-based information to prove LDN/ccsvi/vitD/interferons (delete as per your belief system) is an effective treatment for MS."
I guess the above quote taken from the MS society's research page http://www.mssociety.org.uk/ms-news-and-research/ms-research/potential-treatments/emerging-areas-of-research/ldn (and added to by me) hinges on our definition of 'effective'.

The best evidence we can ever have is from our own first hand experience.
Things that I believe have worked for me and MIGHT make a difference for you:

There's only the one way to find out:

• Aiming for gluten free (which to get even close involves a lot of home made stuff). 
• Great if you have the time and serves as its own meditation once you're in the 'zone'.
• Beetroot juice http://www.amazon.co.uk/Beet-It-25-Pack-12/dp/B005UD1VS2/ref=sr_1_fkmr1_1?ie=UTF8&qid=1348841598&sr=8-1-fkmr1 just before exercise (I think is helping by allowing me to exercise a little longer).
• Making my own sauerkraut (keeps me regular like movicoil never could)Sprouting alfalfa and hemp seeds.
• Drinking freshly grated ginger tea all day (apparently anti-inflammatory).
• Putting turmeric in everything.
• Supplementing with vitD drops (+vitA along with vitD is called the sunshine vitamin).
• Krill oil (in place of fishoil as it's more stable (in the pot), bioavailable (in the body) and sustainable (for the planet).
• approx. 4mg liquid LDN every morning
• Having a great husband
• Stopping smoking
• Vastly reduced weed consumption - was never a major stoner but even one a day becomes a habit (now it's a weekend activity).
• Exercise bike - going hell for leather on the highest gear you can manage for less than a minute every other day + doing boring cycling to raise heart and breathing for a sustained length of time on the other day
• Hiking poles (when my legs a feeling stronger than they are now)
• Pilates
• chi gung/tai-chi (only just started a class but i think it provides a useful focus in the same way as meditation might if i gave it a proper go
• Seeing some sunshine (admittedly not often in the UK)
• Lovely slice of cake now and then (make a mean gluten-free/sweet potato brownie)
• Seeing a counsellor at a couple of stressful times in my life - there's nothing big or clever in 'soldiering on' for you or anyone else's sake - it's a false economy if nothing else!
• Seeing a Cranio Sacral/Shiatsu therapist every few weeks.
• Had my first massage yesterday and pleased enough to go back every week for the next month (and less often after that). I felt less achey this morning and look forward to getting more knots untied over the coming weeks.
• staying curious and interested probably don't get as much done as i could but I'm not hurting anyone else whilst not doing it!
• watch out for Derek the Zebra comng soon to an online bookstore near you soon.

it's quite a broad list of things and so isn't easily tested and so most of these approaches won't be considered as worth doing as they haven't had the gold standard - double blind, placebo controlled treatment.

i know these approaches make my life a little more bearable and I'd consider that to be a success.

A nice meal out helps too! This was having a birthday lunch for Caroline in March. it was up a flight of stairs but Cotto is always worth struggling for http://www.cottocambridge.co.uk/.

communicate or slowly degenerate

So, i found a new analogy today that compared modern medicine to banking in the way that when either institution becomes too fractured the end users those for whom both institutions were set up to serve, suffer.


Doctors: GPs, medical, patient facing professionals appear to care for their patients by the book and don't do much thinking outside the box. Any creative thinking appearing to be reserved for those who don't face patients, the researchers. 

this is a rule and being such gets broken by compassionate healthcare professionals who can and do look at why a thing is so instead of just rushing to patch it up. We feel more in control and best served when our banks are there to serve us with boring (perhaps) but safe investment strategies that won't risk our hard earned pennies. We never asked for them to gamble for us. Similar to how we'd like our doctors to do the best thing for us and that means not taking risks.

Perhaps this approach is necessary when doctors have a plethora of pharmaceutical offerings to negotiate when employed in the business of keeping people from dying. Would it be pushing the anology too far to compare toxic loans and sophisticated financial loan bundles with pharmaceutically toxic offerings?

We got into trouble as a society when the investment side of banking became divorced from the high street, customer facing end of banking. But perhaps medicine needs to be neatly demarcated into the guys who fix us and the guys who think about the problems from all sorts of disciplines. In using a wide range of folk looking at an existing problem through new eyes will benefit Jo Schmo, ultimately (even if they don't directly interact). For example looking with a fluid mechanics' eyes at symptoms and wondering whether they might be caused by a problem with flow rather than just figuring out how to deal with that specific set of symptoms.

Is choosing not to go with the medical experts in your field of disease a bit like choosing not to believe in God? It requires a conscious decision and ongoing questioning of oneself and our place in the world?

as you may be able to tell, these are thoughts that I've first thought about on this page or perhaps an idea was sparked on facebook and here seemed a more appropriate area for thinking out loud (even tho a fair amount of that goes on on there!


Indecision is the key to flexibility and procrastination Rules!


another facebook inspired thought in response to the channel four coverage of the paralympics - all disabled sports people are superhuman which i would have to agree they are but not all disabled people can/want to become sportspeople. it was suggested by a fellow invisible disease sufferer that a lack of empathy and understanding will more than likely be a long lasting legacy of the coverage.

As possessors of an invisible disease we need to employ humour to get our point across. Yes, we have all our limbs but they ignore us when we ask them to do something. MS has turned our bodies into stroppy teenagers. Generalisations are there for a reason. When they're used well they're a shorthand to aid communication  and likely to cause offense when not.

i know sometimes it can feel like MSers were dealt a sh*t hand in life but it's only us who suffer if we let it colour our view of life. I use the word 'us' as moaning and bitching can get quite tiresome for everyone who listens to it.

humour's good but sometimes it's inappropriate when you want to move things along tothe next level...
a call to arms on the 8th october
yes Ann Boyne I think you do get the spirit of what i mean (which is good going cos I'm not entirely sure myself!) other than I think things need to move along. I was surprised at first that 'CCSVI docs' weren't more rigorous in collecting data from their patients pre & post op but that would have cost money and they already have enough of us interested in getting seen by them. More data might allow patients to work out what their dollar will potentially get them whereas at the moment, treatment might get us an ill-defined 'bit better'. Researchers and us can progress when we have more information... is it more effective to those early on in their diagnosis? Would a course of antiBiotics help? how long of which sort? We might believe so but until it's measured we don't know. Dr Franz Schelling I believe we do need to speak with people who design trials/ medical ethicists the people who know who we need to speak to whilst we organise ourselves in collecting data. There are many vested interests on all sides of the equation (money's tight all over the shop) not just pharmaco.s protective of their profits but stent manufacturers, physios and more i can't even think of. We're a big crowd, we have strength in number. Our data is worth something to people. How can we benefit from it rather than/aswell as others? We need to start stamping our feet in time!