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.