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!

fearsome!

had a go on a friend' wife's one of these http://www.trekinetic.com/ - costs more than most cars I've ever owned but about a third of a liberation procedure.
I mention this as both expenditures make knocking at the door to look at a potential future so much more bearable.
Every day i think about how miserable this condition would be without the ability to pay for the occasional:
acupuncture,
CST (cranial sacral therapy - don't knock it til you get a good practitioner), http://www.touchinghealth.co.uk/ I did and then i stopped knocking it (she does shiatsu aswell)
exercise bike,
exercise dvd,
good quality supplements (I believe vitD and B12 are useful but can offer no proof).
internet access (which has provided me the chance to be a patient instead of a victim).
All of these things chip away at the downsides of living with MS as your constant companion. I'm hoping more, and more varied, exercise is going to put off the need for trek's chair although it was pretty sexy... but needing one it seems isn't considered so in our society, even with the upcoming Paralympics! let's see come mid-september (the paralympic torches have just been up mountains this morning and will be kicking the whole thing off next week after a practice of the Olympics brilliantly started by Danny Boyle. it seems the opening ceremony served very nicely as an advert for when the NHS goes global (already has a hospital in Dubai).

'horrifically english' has a similar feel to it as 'terribly british'.
with only the merest hint of  red crosses!
It's got the same double rr but perhaps has come from the mouth of a younger englander?
i include this statement which was about a friend's photoing the torch being punted along the Cam and the Chariots of Fire song was reverently hummed by the onlookers. As they passed one of his friends commented on facebook that it was 'terribly british'.


When you send the media a news release, you ask them to publish your news. If you are to be successful it has to be presented in a way that fits their needs better than other competing news releases. To them this is a business decision. To you it is do or die.

So it is crucial for you to study what media publish, so you can decide what to present to them in your news release. 

If you do you will see that there is a simple formula that defines the elements needed for media success. It boils down to this: 

DPAA + H. 

This stands for: 

Dramatic, Personal, Achievement in the face of Adversity, plus a little Humor.

These elements are the bottom line motivational factors you see in media everywhere. It's a common thread that is used by media to command the attention of the public. This is what the public wants and craves.  this is taken from a pr website and covers what all good fundraisers need to know... apparently.

crowdsourcing is not the same as crowdfunding! but they're both pretty interesting to a patient
http://www.directcontactpr.com/free-articles/article.src?ID=86 

This article refers to TAVI a process and device which inserts a valve in the heart. This was discussed at the CCSVI NICE meeting we attendend. What is interesting about this is the contrast between the process of approval that TAVI got and the cautious attitude towards CCSVI treatment. The TAVI device albeit used in very sick patient was approved for these patients inspite of the high risks...

Medical News: Evidence for TAVI Questioned - in Cardiovascular, PCI from MedPage Today

www.medpagetoday.com

The tens of thousands of transcatheter aortic valve implantations performed worldwide may not have solid evidence behind them, European researchers suggested

evolutionary aspect to empathy chronic degenerative is a step too far tho?

this msg has many thoughts from the past month or so some of their pairings might mean something to others also!

lies, damned lies and statistics

tysabri & PML http://www.jwlindseymd.com/id66.html there are a number of places that report on the number of PML deaths amongst those taking tysabri but I've not seen this expressed as a percentage. whilst horrifically unfortunate these deaths can mean nothing more to us other than representing a number of families torn apart.
it's only when you know how many people have taken the treatment in total that the numbers represent anything more than sadness. I can quite see how a procedure whether addressing venous or immunological issues) that's tailored to the individual is likely going to be less risky than one designed for the majority. My Tysabri boat apparently sailed four years ago and i chose to be Sclafani'd seven weeks ago but without useful numbers and percentages none of us can reach conclusions about treatment choices. I resented having to trust that i'd made the right choice a few weeks back. i think the lack of meaningful ccsvi research is just as shocking as half presented tysabri numbers. I believe we need openness and honesty across the board.
 For me I find the 4% chance of catching something worse than I already have sounds more alarming than a fraction of a whole number... (0.something and i start to switch off and i feel 0.0something will never happen to me). 

We can get statistics to say whatever we like. 
One of the statistics that people are really good at ignoring is the chances of winning the lottery - 1:14,000,000 when we compare this to the 4% chance of getting something it a bit brings it into starker focus for me, at least.

crowdfunding for ccsvi research? http://en.wikipedia.org/wiki/Crowd_funding
I'm 'super excited & pumped' (doesn't sound at all right coming from a britisher's lips but I'm starting to quite like it after hearing it on US wellness/exercise blogs) about the announcement of the UK govt's wellbeing measure. It sounds like it could be hopeful when trying to point out to healthcare practitioners that there are many ways to gauge a 'successful outcome'.
i'm not sure what the measurement was for disease modifying drugs to class them as worthy of prescribing across the MS population - oh that's right they were only designed for RRMS (people whose MS naturally goes in and out of a state where they have more, less or no symptoms - http://www.mstrust.org.uk/atoz/types.jsp quite a comfortable disease profile to test on?
I'm finding it pretty tricky to not become a bitter old conspiracy theorist as it's turned out, over the years that big bad pharma really ARE. I think there's link up on an earlier post to GSKs actions for which they appear to factor in having $3billion in the petty cash tin to cover any fines for questionable marketing behaviour.



I find it quite comical that our prime minister http://www.number10.gov.uk/ can get away with saying he didn't believe a news editor was involved in any wrongdoing in the Milly Dowler type cases at the News of the World for which the government set up its own investigation into suspect behaviours. http://www.telegraph.co.uk/news/uknews/phone-hacking/9422408/Phone-hacking-Andy-Coulson-and-Rebekah-Brooks-charged.html The Leveson Enquiry anyway, i'm staggering away from the point I had (that i very much hope i haven't lost in this heat http://www.weather.com/weather/right-now/52.205337,0.121817?cm_ven=Googlemaps&cm_cat=googleOneBox&cm_pla=application-us&cm_ite=today

yes, i know 81f is seriously unworthy of mention to most folks in the US.

I'm drifting, people with MS here in the UK are considered to be vulnerable adults, folk for whom the wool is easily pulled over the eyes of and yet our prime minister can get away with saying he's a rubbish judge of character and didn't think the person he chose to employ as leader of the party's pr dept. (grasping for a better word) would do illegal things?
The more i find out about David Cameron PM the more i really don't like the sound of him.

We're only talking cursory websearches and listening to the news not FOI requests http://en.wikipedia.org/wiki/Freedom_of_Information_Act_2000, http://www.dailymail.co.uk/news/article-1191155/Claims-David-Cameron-30m-fortune-sit-uneasily-taxpayers-So-truth-money.html. He comes from generations of financiers/taxacrobats and yet feels justified to point the finger at a comic's tax affairs on his own, earned income?

All these actions are 'totally legal' (As soon as you have to point out an action's legality you kind of know that action is morally questionable).


The thing i think stops a lot of people's contentment is the feeling that there's one rule for some and another for others. it could be argued that being governed by a number of Old Etonians rather nurtures that feeling.

it strikes me that MSers are more aware of questionable characters because there are so many from prime ministers through to faith healers passing drug companies along the way that try to pull wool and i think, as a consequence we're quite wise to them. We're not fatalistic and seeing the worth in any given situation we're just more aware that not every business is fluffy and has the wellbeing of the individual in mind.  http://www.guardian.co.uk/lifeandstyle/2012/jul/24/national-wellbeing-index-annual-results?newsfeed=true 

I'm looking forward to the appointing of a wellbeing czar.


it may perhaps be a trite thing to say but perhaps folk who've been dealt not the best hand are the perhaps the people to be consulted over happiness quotas - those who have mastered their own internal wellbeing?
apologies for the meandering nature of this blog post its shape goes some way to representing my scattergun brtain in this heat where i can start off somewhere and pass through somewhere else entirely although this post has a number of issues which have been interesting me in the past few days and if you don't look too hard they sort of all fit under the statistic title.
hapiness is, after all, all about the numbers!

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

a new avoidance activity

i'll be posting some occasional pics but in the meantime my flickr page is http://www.flickr.com/photos/10149515@N04/
if this doesn't work (bit of a 'puter div at times) search for username: petrol alt gone
i wrote this ages ago not sure why i didn't post it but here it is.
In amongst the recent work projects http://www.flickr.com/photos/10149515@N04/sets/72157630420126776/
i've had and commoonity work there's a gallery of pics from my visit to NYC in september/october 2009 http://www.flickr.com/photos/10149515@N04/sets/72157622427977473/ and my most recent visit to brooklyn which isn't strictly in NY i found out being over the river and so is really in new Jersey. 

I never knew this. 

I need to process the pics from that trip and more still from my trip two years ago but life has been getting in the way of blog... in a good way. I'm sure i can hear the tone of my own voice as if overhearing someone in a railway waiting room and silently cursing them/me for being so... i'm not sure but it's not a good word. I think the word could be insufferable?

getting a bit existential here, best be off. too many 'I's for a start. Other blog posts on here are worth reading honest

ccsvi thought No.? (at this point i've lost count)

i think the mismatch between people who have and don't have ms is where there's going to be disagreement over whether venoplasty has any worth for those with an ms diagnosis... 

what training do medical professionals get to gain a bit of understanding into what they're chronic conditioned patients face on a day to day basis (i think that's probably a bit of a rhetorical question).

If i were an expectant mother i'd feel a little uneasy receiving care from a childless midwife... she's READ about the pain but she hasn't FELT it.

There will always be a gulf of unshared experience between a neurological patient and their neurologist.

What would we (as ms patients) consider a ccsvi procedure having 'worked' to mean?

You know it won't be the same as someone who doesn't have MS. 

From the outside I don't walk any better, i hold on to walls a little less but still need them and a stick when outside + I was looking at an MS colleague's wife's wheelchair http://www.trekinetic.com with some sort of crippled lust! 

I sweat (I'd stopped about 6 years ago) not necessarily a great outcome to someone who doesn't have heat intolerance! 

i can type with a slightly less predictable stream of typos from my dragging fingers.

my right foot doesn't drag  and cause me to trip on uneven paving stones or kick out at the ankle as much when going upstairs.

i can contemplate doing more than one thing a day (sometimes ms symptoms can really sound like laziness to me and i get them - no wonder the general public are relatively clueless about ms).

I'm glad i seem to have a relatively benign form.

after speaking to my ex heart patient neighbour who looked after our cat while i went for venoplasty to temporarily widen my malformed jugular and azygus valves I started to see angioplasty for angina as having similar qualities to venoplasty for MS (let's leave aside for the moment the many and varied hypotheses for MS's aetiology. Truth is MS docs still don't know so probably there's more than one and so a treatment that deals with ccsvi won't address ALL cases of ms.

Angioplasty doesn't stop heart attacks (unless you're in the middle of one) and subsequently, 

there are some questions over the efficacy of performing an elective angioplasty.

http://harvardpartnersinternational.staywellsolutionsonline.com/HealthNewsLetters/69,H1210a

We need to consider our definition of success.