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/.

give me an I, give me an A, give me a T, altogether now what have we got...?

IATROGENIC

I got in touch with the British Vein Institute whilst trying to find someone who could operate on my wonky valves identified by ultrasound in glasgow but who wouldn't operate* even after seeing an issue (it's a new theory so there weren't many takers) the BVI put me in touch with charing cross hospital who'd authored a paper

http://www.ncbi.nlm.nih.gov/pubmed/21803799 which introduced me to the word

i·at·ro·gen·ic

   [ahy-a-truh-jen-ik, ee-a-]  Show IPA

adjective

(of a medical disorder) caused by the diagnosis, manner, or treatment of a physician.

Dear Professor Davies/Academic Section of Vascular Surgery at Imperial

,

Philip Coleridge Smith recommended contacting you when i mailed the BVI this week asking if they knew of a vascular specialist with a possible interest in the venous anomalies which have been much trumpeted in the past few years.

I have MS and I am looking for someone to pursue further a potentially treatable vascular dimension to my illness.

I think I’m wondering if you know of someone I could contact who would be willing to perform an MRV or perhaps follow other lines of investigation?

The following is quoted from an evaluation of a Doppler ultrasound performed on myself in August 2010.

”...both [IJV] valves appear malformed. There is evidence of pooling of blood seen at the lower segments bilaterally with significant flow resistance.

Vertebral veins are patent and also demonstrate normal retrograde flow with no evidence of reflux.

Impression: The appearances are inconclusive of CCSVI. Suggest an MRV for further evaluation.”

This link http://www.ncbi.nlm.nih.gov/pubmed/21803799 kindly sent to me by the BVI shows your department see the fallout from overseas CCSVI treatment as noteworthy.

For this very reason, If possible, I’d like to avoid  going overseas in order to be in the same country in which i might receive follow up care.

Is this a realistic prospect?

I received an MS diagnosis 18 years ago and am just about managing to stay out of a wheelchair although walking is becoming a little challenging at times.

Thanks very much for your time and attention.

Foolishly, i was hoping that medical professionals were as interested in the patient as the patient's inner workings. There doesn't seem to be an awful lot of investigation into patients and how well or otherwise they're functioning except by people who appear to hold on to their own theories and merely look to back them up, consciously or not. 

when i mailed different members of the hospital that had authored the essay linked above who are, at this moment involved in looking for signs of ccsvi in a study they didn't seem open to this theory.

I know there's an awful lot more to it than that and they were very kind spending time replying to a couple of mail from some person off the street and they go to show the medical profession is made up of individuals. There are good and bad consultants and GPs just like there are good and bad bankers or teachers (how often do those two careers get mentioned in the same sentence nowadays?


I'm listening to myself bleating on and wondering what it is that I'd want any different? They're scientists proving or disproving a theory, that's how science gets done... Like CERN testing the faster than the speed of light particles that appeared to have shown up? They tested the theory instead of saying to someone keep your mind on the job and try and avoid typos - this stuff is important. They did science and tried to reproduce those findings.

i think this post doesn't necessarily come to any staggering conclusions except that curiosity is a really attractive feature in those who look after you and perhaps it's only been when it's absent that i've noticed how lovely it is.


* i'll discuss this in another post if i haven't already