the evidence is mounting...

...that pharmaceutical companies appear not to be here for our benefit.

this post has become huge (but readable, I hope) I was going to break it into two but I believe that all sections have a bearing on the others.

"Avandia (GSK) (rosiglitazone) is the poster child for the dangers of diabetes drug treatment. A 2007 study in the New England Journal of Medicine5 linked Avandia to a 43 percent increased risk of heart attack, and a 64 percent higher risk of cardiovascular death, compared to patients treated with other methods."

"Dangerous type II diabetes drugs are again brought into the spotlight by a whistleblower who reports that Takeda Pharmaceuticals concealed and downplayed adverse events reports for its diabetes drug Actos, including hundreds of reports of heart failure; the drug has been banned in Germany and France and is the subject of hundreds of lawsuits, but continues to be sold in the U.S.

Dr Mercola and his articles can be a little scaremongery but I think his heart's in the right place. He is your nagging wife/mother/partner/doctor/significant other/whatever that you know is speaking some good but, well none of us like being told to put down the sweets/pint/pie and start moving.

There was a programme on BBC1 at the beginning of the week about the role of one individual 'pitted against' the Goliath of collective pharmaceutical companies - the battle ground was cancer care and potential treatments. 

When I was little I seem to remember Panorama was a very serious show that talked about grown up things in a fair way although I may not have been aware at the time that programmes could have 'slants'. 
I've watched episodes of Panorama since those halcyon days where all I had to worry about was getting my homework in on time or at least inventing a very good excuse as to why it wasn't. Unlike many of my blogging colleagues who speak from some position further up the medical pecking order than I this programme/person was considered to be hopeless in a variety of ways. From my position very far down the medical pecking order (even an auxiliary nurse is higher up the pecking order than a patient) I saw the programme as delicately fair.

"Unfortunately, every time I think that Panorama is going in for the kill, the reporter (Richard Bilton) seems to back off. Perhaps it’s the editing. From reports that I’ve had, the producers seemed to “get it,” but one wonders if something got watered down in the final edit." 
(wouldn't there normally be a question mark at the end of that quoted sentence? I only ask as I wonder if its non-existence in this instance points toward why I believe the writer and I 'read' the show differently?)

...a thirty minute show, it went on to say, wasn't long enough to go into the 35 year history Dr Burzynski has of trying to treat cancer...

"That left [panorama] asking the question at the beginning of how Burzynski has gotten away with this for so long but not really even trying to give an answer at the end."

I believe the surgeon David Gorski/Orac has missed the point: the pharmaceutical companies have been trying to treat cancer for 40 years and seem arguably no further along the cure road than DrB. If there were any worthwhile treatment available then the parents of cancered kids would snatch it, whatever its source.
But in the majority of cases it seems there isn't. 
We've been poorly served by the pharmacos. Fantastically successful marketing has led us to believe that if we get ill of course we'll get better - there'll be a pill for it.

"Unless Burzynski openly admits during the show that he knows it’s all a bit of a scam, that he’s deliberately not released trail data to the peer review process, that he charges massive amounts for a treatment that he knows there’s no good evidence for, that he admits that he’s exploited loopholes in FDA procedures to keep it all going as long as he has, that he openly lies to patients about potential success and how treatments are progressing, then not a lot is going to change. Well not immediately, anyway." 
excerpted from

Predictions and hopes about Panorama on Burzynski from the skeptical blog.  

I'm very much in favour of science even when it would seem that science isn't very in favour of me. How else can we explain research into the condition  labelled MS of over 150 years and yet still be no closer to finding a pharmaceutical solution to what's going on? It could be viewed as quite demoralising to have a condition about which no one would seem to care enough to look sufficiently to see anything. The alternative view where I, as a patient, am not demoralised but angry as hell is that researchers have known since looking at postmortem brains in the 19th century that a vein is involved in every piece of damage and if we'd been using the imaging technology available to us since the last century we'd have had a very lucrative disease licked by now. 

It's hard not to be a cynic in these situations. 

What I believe both bloggers have missed, commenting from the positions of health as I imagine and hope that they do is that the role of hope in dis-ease is vital and shouldn't be ignored. When a man says he can cure your dying child or, at least, doesn't say your child is going to die the parents receive a lift which in turn contributes to a boost for the child (as I think was reported in the show) the child shows a benefit at the beginning of the drug regime change but then slips back to the pre-Burzynski level of illness.

Instead of rubbishing the non existant/unscientific results of a doctor it's hard to find anything to agree with let's investigate the, albeit fleeting, benefits that were reported. I'll say it again, if mainstream medicine were able to offer a viable alternative then there just wouldn't be space for the Dr Burzynskis of this world. But while it provides no alternative don't be a dog in the manger by stopping patients from looking elsewhere.

the power of placebo in drug trials is often stronger than the treatments its there to function as a control for.

Just listened to an interview on woman's hour with Sheila Dillon about her experience of discussing nutrition in the hospital after receiving a multiple myeloma cancer diagnosis. In the Food Programme she'll be discussing this topic on the 19th May. She asked her oncologist and various other professionals in hospital about nutrition... basically it didn't matter what she ate they'd said to her.
The snack trolley (a supermarket shopping trolley stuffed full of sugary snacks, crisps etc) she'd see wheeled up and down while she was visiting for chemo.
I suppose the nursing staff would consider a chocolate bar to be a treat and god knows, the patients need a treat or two if they have cancer... comfort food never did anyone any harm!
She was mildly horrified at the lack of interest &/or knowledge around nutrition. What a body might need more or less of while fighting cancer didn't feature on any of their radars.
I hope with more mainstream folk highlighting the troubles anything faces getting trialled in a comparable way to the 'gold standard' only pharmaceutical companies can afford that we might see the green shoots of an alternative to the pharmaceutical stranglehold of treatment options in many chronic diseases.
...gotta have hope.

Does this disconnect show a perceived lack of shared experience between the healthy and the sick?
Even the least food aware amongst us must know that sugar isn't good for us but health professionals seem not to regard the sick as having bodies just like theirs? Is this a lack of empathy on some sort of unconscious level? Perhaps it's a necessary level of self preservation? After working in this environment day after day, year after year would it pay to imagine thinking of your body as delicate and vulnerable  just a sick person's?

I find it very curious and in the same way as the health professional's sphere of experience is different to mine i guess i can't put my mind into that of theirs either, thoughts anyone?

pay attention!

(The information available around MS may aswell be spoken by a toy zebra to a cat for all its usefulness)

So, I noticed a couple of pieces of 'news' this week which together could be seen to contribute to us, as MS patients, being poorly represented in society. There are of course, many other things to take into consideration some of which I've mentioned more than once in earlier posts.

The MS Society carried out a survey which was reported on in various media  The Telegraph and Pharma Times amongst them on Friday (is the day relevant? People are rarely as alert on a Friday as they are on a Monday morning as I'm sure Nick Davies has hypothesized in his book Flat Earth News).

The survey in which they tried to stoke a fire under MSers by talking about how over 40% of patients aren't taking DMDs (disease modifying drugs) concluded this was a terrible injustice.

No it isn't.

It WAS a terrible injustice 14 years ago, back in 1999 when these treatments were getting their release and coincidentally(?) are now coming out of patent. NI(H)CE came into being expressly to dole out these new MS drugs more democratically.

...To stop the postcode lottery...

Now with a decade's more data to play with and many patients having experienced the flu like symptoms that come with taking some of these drugs over 40% of MSers have chosen to not be on these regimes as they don't work very well. The clue is in their collective name (disease MODIFYING Drugs). NIHCE proclaimed, 10 years after agreeing with the pharmacos to pay for the CRABs (Copaxone, Rebif, Avonex & Betaseron) that actually those drugs weren't worth paying for. The survey carried out by the MS Society takes the shape of one single arrow in the bulging quiver of an MS pharmamarketeer. The MS Soc it could be argued appear to have a cosy relationship with the drug companies with whom they have, at the very least, a symbiotic relationship. Speaking from where I do I'd say they both have a parasitic relationship with the people they proclaim to help.

But the BBC too? After reading this  http://www.theregister.co.uk/2013/04/26/churnalism_detector_churned/ on the 26th of April I expected better from you on the 29th.
The Telegraph's reporting of the survey doesn't surprise me (especially if Billie Piper gets a mention and a chance to feature her photo). Pharmaceutical companies are The PharmaTimes' bread and butter so no real surprise at their fine example of churnalism
I appreciate that there are all sorts of reasons for 'news' being reported without due care and attention but, if anyone has any time the story of MS is chockfull of interest to get stuck into which ultimately has a bearing on all consumers of healthcare.


MS has few if any, easy answers and a 'map' of alternative MS treatments created by The University of Copenhagen will hopefully help patients navigate their way through the course of their MS.
Why has the MS society not reported on this?
Is it perhaps because, as yet they don't have such chummy relationships with alternative therapists?
The much touted treatmentless 40% are dealing with their disease but are choosing for themselves more relevant therapies. The network of independent charities that together represent MS Therapy Centres nationwide are a fine place to start to find a treatment that's right for you. They came into being to be able to provide access to HBOT (and other therpaies at an affordable price. They are in the business of helping MS patients on the ground. Each Centre fundraises for themselves so they have no need to pay the the high cost of a chief exec of a national charity.

Churnalism and chronic conditions, much like drinking and driving just don't mix. There are lots of vested interests when it comes to MS care and as a patient patient I have learned over the course of two decades that a story should never be taken at face value.

so many shades of grey!

As owners of an unknown thing I believe we'd do well to view our condition with an open mind. Neurologists would appear to have been barking up only one tree in their search for the shape, colour and texture of this condition.
Arguments rage in MS forums the world over as to whether MS is an auto-immune disorder ie the patient's own myelin is mistakenly eaten up by their own immune system (like their very own very hungry caterpillar or our very own Fidos please see earlier post) or whether MS has vascular aspects to it - disordered cerebral bloodflow creating oxbow lake type damage from whorls and eddies in veins. Flood damage, if you will is caused when blood is held up leaving the head perhaps also being implicated in slowed perfusion to the brain. Our blood  dithers and loiters rather then leaving the head in a timely manner and ends up dawdling back to the heart. 
Ok, not very scientific descriptions. 
But the main arguments appear to have become quite binary - either you believe the immune system is confused or you believe the  vascular system requires its own NRA (National Rivers Authority rather than National Rifle Association) although the strength of feeling amongst patients and their professional care givers can run quite high so perhaps both NRAs are needed?).
I believe a little of both theories could be going on in my own body.
2 of my NHS neurologists have been chief advisers to the UK MS Society. The first one looked after my gran as she died (thankfully relatively quickly of motor neurone disease in her late 80s. She thought he was great - he apparently had a fantastic bedside manner. All i knew, 2 years before my MS diagnosis and before the internet had really taken off amongst all but the earlieset adopters was the need to find some sort of drinking beaker for my nan's failing hands. http://www.tommeetippee.co.uk/product/easy-drink-beaker/
the neurologist who gave me my diagnosis died and, 10 years later i was appointed the man who looked after my gran it was only then that i realised his bedside manner worked best on frightened patients who didn't ask questions of their experts (from what I've been led to believe the man in 50 shades also wants a subservient, pliable female). A few years on and our relationship didn't blossom into the classic doctor,patient/master/slave one so i asked to move to the care of a younger neurologist for whom i'd taken part in a study and had regular MRIs for 6 months. Once he'd taken on the role of my caregiver I saw that he too needed to feel in the position of 'expert'. 
Thing is 'expert' is a relative term especially in the field of MS.

Disabled/Reabled?

The sun's appearance this spring I imagine has been good news for everyone's states of mind http://www.nbcnews.com/id/32289718/ns/health-behavior/t/you-may-think-best-sunny-days/ especially after the seemingly endless months of pewter grey prisonlike days which I'm pretty sure has a knock on effect on the body.
Using something that's obviously been thought about and is full of elegant solutions for what it sets out to do can be as life affirming as a sunny day.

This is a post 'bout my first ever trip to the wheelchair centre http://www.bartrams.net/page.php?category_id=7. I'd had a very short go on a friend's wife's  trekinetic wheelchair at his suggestion when i mentioned that it felt like i was needing to think about such things. The footprint of my life no longer included trips to London to see an exhibition or walks on the beach when visiting family. Making my way on the tube hadn't been an option for some time. The length of one tube platform is pretty much beyond me let alone a handful of them. I hadn't been bothering hills for years but can't blame increasing disease for my absence in that area!
Life has been becoming smaller and smaller.

I tried a load of different chairs and could only say at the beginning of the outing 'well, that's quite a stack of cash for the  www.Trekinetic.com'
Just talking to the sales guy and before I'd sat in any it seemed trekinetic's all*terrain suitability  is what you'd be paying for.... that and its breathtaking looks. I'm not an adrenalin junky and wasn't sure that my wheeled needs would warrant the price.

Then I sat and pushed in some other chairs in the shop and I realised that style, slopey wheels and knobbly tyres aren't the only qualities you're paying for. It's stand-out, hands down better than anything else in that shop at propulsion, speaking as a wheelchair virgin.

I think because the user sits a few inches further back over the wheel there are a few more inches of contact with the wheel to push and propel yourself further, compared to the others I tried.

I'm going to borrow one for a weekend.
I'll settle trialling it on provincial pavements and do the beach first, on a trip to the seaside.
I want to see a couple of exhibitions in London but I don't think I'll tackle the tube til i'm used to my new mode of transport.
The wheels shift between urban and offroad by twisting a bar underneath the seat; angled wheels for uneven ground/greater stability to upright wheels better suited for manoeuvring indoors and getting through doorways.
I googled it for user reviews and the one thing that came back was the two different methods for getting up kerbs. Fulltime long term wheelchair users weren't keen on the change - not much good for spinal cord injured but if you have some use of feet to be able to move the footrest out the way it seems it's ok.

Worth reading others' thoughts on it online, I found this blog http://www.apparelyzed.com/forums/topic/7046-top-end-all-terrain-crossfire-and-trekinetic-my-reviewrant/ particularly useful for a bit of objectivity and asking the questions I don't yet know to ask. I tried one of the active/sport chairs with low back which I found just didn't roll as effortlessly as the trekinetic. My lack of experience has to be borne in mind; I didn't come with any weight of expectation or previous experience. My arms aren't for the moment primed for propulsion.

I'm looking forward to getting into this chair.
It's put the word disability into a very different pigeonhole in my head.
An altered frame of mind even without the trekinetics headturning looks & award winning design could be worth the price tag alone?
If you're in the enviable/unenviable position to be needing a wheelchair outside the home and have found a way to pay have a look at their website - there's a woman pushing herself through 6" snow!

* lack of gravity might stop this chair working on the moon but I reckon it could probably deal with the rest of the lunar environment.

am I a Fido?

Recent research has been conducted by Dr. Philip De Jager of Brigham and Women's Hospital in Boston and Dr. Barbara Stranger of the University of Chicago, mentioned in the American Journal of Human Genetics that points toward the over-active immune system of auto-immune conditions like MS being the next step in evolution. 
In a world where our immune systems were having to fight stuff off left right and centre we would have been the next step in creating better evolved, infection fighting beings as our immune systems fought off everything but, then we went and discovered cleanliness and antibiotics.
It seems our immune systems were kicking their heels, bored with nothing to do and started chewing themselves (much like an under stimulated pet?)

http://www.sciencedaily.com/releases/2013/03/130322104255.htm

Nice to know my body might be working perfectly in another, alternate universe!

be a sh*t - science expects it of us!

http://www.ncbi.nlm.nih.gov/pubmed/23315621
not sure what i feel about this study.

it appears to give folk with MS an excuse for behaving thoughtlessly toward others. Is it just another sign of over medicalising our lives (by 'our' I mean everyone, normals and all).

Bit shy?
You have social anxiety disorder
...that can be medicated!
 the drugs developed to combat depression SSRIs on which studies are coming through saying they're not that effective and you'd be better off following your mother's advice to go out for a brisk walk and feel the air on your face. Just as these drugs have the potential to lose customers they find another customer base.

When I've been shy back in the day when i did social situations I'd have a drink like most of the rest of folk who've felt a little awkward at parties.

I chose to medicate with a brain relaxer (perhaps sometimes a little too effectively).
let me know what you think about the subject (I know no one reads these posts but writing a blog is the less mobile's attempt at not being shy!)

let's part-ay