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.