Thursday 25 October 2012

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/.










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