realistic optimism = unadulterated realism?

This zebra is going to find out about Turing's Patterns http://www.wired.com/wiredscience/2011/02/turing-patterns/ seeing as he's covered in patterns he has a different sort of insight into stripes than scientsts and he knows better than them what it's like to live with what they study.

There are so many things to think about when you sit a lot. I found this piece by Dean Burnett pretty amusing http://www.guardian.co.uk/science/brain-flapping/2012/nov/29/pseudoscience-science-argument
I don't wish to disagree with the author in any way - they're all good points but, I feel, when it comes to chronic disease and the treatment of it there are an awful lot of potential income streams and so many vested interests.

you can skip past the next two paragraphs it gets better toward the end (honest). Like many of us I'm not as strict with editing my own work as i should be

So often i start these posts and get back to them after thinking for a bit but sometimes i leave them just a bit too long and what I'd thought were smart and pithy observations appear not to be... at all.

On a good day this post's title is true, life's glass is half full of effervescent, healthful, thirstquenching loveliness but on less good days all I have near my hands are a handful of pointy health and safety hazards where a glass used to be utterly leaving aside considerations of how full it is of which particular fluid for a good day - just not TOday.

...but today i learned a new thing what Potemkin's Villages represent in Russian vernacular: the same thing as Smoke & Mirrors in ours. This is what neurologists have been employing whilst peddling the immunological aspect to MS (since about 1922) and the accompanying array of 'disease modifying' pharmaceuticals. 
"This analogy gives our 'plight' a wider appeal, nice work Dr Franz Schelling." thanQ. 
 atm i'm trying to shoehorn how this referencing could be applied to our current crop of mouse bothering neurologists. The ones I've spoken to have knowledge of Charcot and Carswell's 19thC observations that the veins appear to play some part in the brain damage associated with MS but they don't seem to show as much respect to this history related to their craft  as the many filmmakers of the last century who've referenced the Battleship Potemkin's Odessa Steps scene. This mismatch of acknowledgement of their forebears could lead us into interesting discussions about the inherent qualities of the human sciences and humanities.
But ultimately, both trades are dealing with how the brain functions.

I've mentioned the book Testing Treatments (which the relatively recently published Bad Pharma by Dr Ben Goldacre also references) in previous posts - it talks about the need to make sure that research is cumulative allowing  each new piece of work to build on what's gone before and  contribute to what's to come rather than be trying to reinvent the wheel every time. 

Perhaps filmmakers could teach something to our neurologists?

What I'm really thinking?

having a chronic, incurable, degenerative, illness is somewhat isolating. MS is relentless. It's a bit like Arnie or Annie who stop at nothing before getting their man.
It requires a different way of thinking... It requires more thinking full stop and that's before you've even had breakfast.
I was months away from my 21st birthday when i got this diagnosis. I allowed it to define my life even though, with the benefit of hindsight, it's only really been 6 years or so that it actually has.

Exception Management is a new term (to me anyway) for what appears to be people doing their jobs, taking each case on its own merits and working through solutions individually.

http://www.amazon.co.uk./Pain-Fifth-Vital-Marni-Jackson/dp/0747565589 this is a great book so far. It was lent to me by the massage therapist I've been seeing for the past few weeks. The author has just spent time in a pain clinic where experts from a range of disciplines are asked to look at the next tough case the clinic gets (they are often the last resort) to which a gp will send their 'hard to treat' chronic pain patients... psychiatrists, psychologists, anaesthetists, therapists of many backgrounds spend time looking into a patients history, current circumstances and does some exception management.

It seems empathy is what's missing in modern healthcare. Apparently since Florence Nightingale nursing staff are one of the only professions to have it in spades. Marni Jackson's desriptios of pain clinics describe what is missing in people's long term care. sometimes it feels like the doctors can't fix you and so lose interest. perhaps that's very wrong of me and i should just buck up my ideas or go for a nice bracing walk in the autumn sun... oh that's right, I can't.

before you think I'm on some sort of pity trip I'm really not. I want to set up an expert patient course especially for MS patients, I think talking to the head of th MS TCs might be a starting point. their details are attached to a group which includees the James Lind Alliance that is trying to find out from patients what direction they'd like to see future research go in. this is to try and counteract dealing with A N Other drug trial being proposed by profit making entities https://www.surveymonkey.com/s/mspsponline.
 

One of my 'colleague's in disease has eloquently pointed out the struggles that a chronic condition can bring http://www.wheelchairkamikaze.com/2012/11/why-must-being-sick-be-such-hard-work.html so calmly and succinctly cataloguing what can, at times, reduce our experience of life to some sort of soul-sapping misery.

  I hear hospices are pretty compassionate places which makes me wonder why that is. Is it because the staff (and patients) at a hospice know what's to come?
why is it that often I feel that there is a huge gulf of understanding between me and (take your pick) from assorted caregivers.

this post also needs polishing but i figure exposure will help clean up my own shoddy practices!

As someone with a chronic condition i listened to the pronouncements of Lord Justice Leveson http://www.bbc.co.uk/news/uk-20543936 on the behaviour of an unruly industry with great interest. As Mayor Johnson http://www.citymayors.com/mayors/london-mayor-johnson.html I think said at some point along in the proceedings (albeit with a better grasp of history and the English language than me) daylight is the best cleanser of squalid practices.

I'd like to have a Leveson style inquiry into the practices of pharmaceutical companies that have also been found guilty of sharp practices. I have a feeling one may not be so forthcoming as there isn't a picture of a teenaged girl attached whilst there are shareholder profits and people's and institutions pensions at risk. that's no reason to not talk about the proposition with as many folk as will listen.
this post isn't finished but I want to strike while the iron is hot.

 I think I know lots of people who share my well founded mistrust of the pharmacos.

We may not count Hugh 'floppy hair' Grant http://www.guardian.co.uk/media/2012/nov/29/taking-on-the-tabloids-hugh-grant or other celebrities trying to enhance their profile amongst us but people with long term health conditions who have to put up with the pharmacos' apparent lack of honesty in reporting trial data, fair pricing, exaggerated efficacy of overpriced products... etc.

We are legion and growing, ignore us at your cost MPs and decision makers.

Our illnesses are debilitating but not deadly - we're not going anywhere in a hurry.

imag(in)ing

It's a precious thing my brain.
It's easy to get all paradoxy looking at it wondering what folds are responsible for thinking this thought... this one right now. Is it a really honest self portrait or merely providing a gossamer-light smokescreen?
After all, with the birth of new imaging technologies like MRI in the 70s and 80s an image of the brain has become iconic like images did of the earth from space in 1969 'cept I wonder if we get more of a warm fuzzy glow from the earth imaged?
There isn't the same emotional resonance seeing, literally, what makes us tick. You could say an image of us collectively in our living environment (the little blue marble) is greater than a single aspect of one individual.
Ultimately what do you get from an image showing what's making us tick?
With the flick book i wanted to try and bring some 19th century 'end of the pier' technology to a late 20th century technology (that uses magnets! an almost elemental/timeless technology).

Do you get more from an orchestrated grimace/cheesy grin?
A portrait subject chooses to present a front to the viewer. 'This is who I am' not just when the camera clicks but for all time. the subject is SO not about artifice!

So many other smart things seem to be going on in the human body that our brains almost pale into insignificance.

An e-coli infection that keeps coming back as persistent UTIs apparently hides under a biofilm a creation of its own making of dead and used cells (letting it hide like a limpet stuck to the side of the bladder wall). I believe this is the same thing that Lyme type infections http://www.lymeinfo.net/multiplesclerosis.html do in the vascular system that some folk believe a long term antibiotic approach is useful for tackling. Chlamydiae Pneumoniae is apparently an alternative foreign body lurking under its own invisibility cloak explored further here http://www.davidwheldon.co.uk/ms-treatment.html The counter argument to the Lyme theory is http://theness.com/neurologicablog/index.php/ms-and-lyme-disease/ I think it's worth keeping in mind other's ways of thinking. Conspiracy and counter conspiracy abound when there are so many people tired of playing their roles in medical Cleudo at the same time as there being so many unknowns http://en.wikipedia.org/wiki/Cluedo

all this talk of alien invaders settling down into our bodies pretty comfortably and efficiently (which both harm and help us) can cause us to question who 'we' are. http://www.ted.com/talks/bonnie_bassler_on_how_bacteria_communicate.html

Another desperate grasping at straw: I'm looking into getting my fatty acid profile tested. Our brains are 60% fat after all. Patricia M Kane phd has done lots of research on the role a faulty lipid metabolism plays in neurodegenerative disease amongst a host of other disorders. http://www.healthy.co.nz/news/550-discover-the-benefits-of-essential-fatty-acids.html it's a long almost inscrutably technical assessment of her work but the final four paragraphs make for heartening reading. I'll be posting the progress of the exercise

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!