Month: October 2014

disenchanted forest

disenchanted

Sometimes it feels as if my very determined cat has as much chance of getting to the bottom of MS as the current crop of researchers.

What does Russell Brand (famous in the UK for being a non-voter, comedian, actor, past drug user and ex husband of Katy Perry) have to do with the current state of MS research?

Much more than my cat, it turns out.

A number of us with this particular chronic disease are disenchanted by what the medical establishment are offering us.

We may not be debating such lofty subjects as the future of democracy but the stranglehold the MS establishment (neurologists) have over our care is every bit as important in our lives.

A number of us have chosen not to participate in auto-immune theories (and treatments developed from them) and as such we could be considered to be disenfranchised.

disenfranchise
ˌdɪsɪnˈfran(t)ʃʌɪz,ˌdɪsɛn-/
verb
past tense: disenfranchised; past participle: disenfranchised
  1. deprive (someone) of the right to vote.
    “the law disenfranchised some 3,000 voters on the basis of a residence qualification”
    deprive (someone) of a right or privilege.
    “we strongly oppose any measure which would disenfranchise people from access to legal advice”

We, as owners of an as yet impossible to cure disease have been deprived of the right to a second opinion in the research field. MS is many things to many people. Prof, Giovannoni has been receptive as have many others, to the idea that MS is multifactorial meaning it has a number of possible causes including exposure to the Epstein Barr virus, lack of appropriate sun exposure/vitamin D deficiency whilst our bodies develop, a trauma to the head prior to symptom appearance and exposure to emotional trauma to name just a few likely suspects.

So, we believe there isn’t just one story to explore in the process of finding a cure and would rather not be given chemotherapy drugs before the experts entirely know what they’re dealing with

I can’t speak for anyone else but I’ve become pretty disenchanted with the status quo. I have reached a similar conclusion to Russell Brand – it’s best not to hold one’s breath while expecting change.

Another piece of news caught my eye this morning which is sort of related Sir Nicholas Winton. Here is a man who coudn’t stand by and let things carry on as they seemed to be destined to. I’m not comparing a contemporary cenlebrity’s actions to those of a one hundred and five year old’s action on the eve of the 2nd WW but the fact I can mention them in the same paragraph only serves to highlight how few folk there are who are willing to put their heads above the parapet.

 

 

The MS treatment I want to explore

deflated scull and crossbones balloon

In the news today (20 October) the UK was given the proposition that dying folk should be given experimental drugs before they get through the full trial process. Let’s ignore for the moment that the full trial process hasn’t delivered much for MS patients. So what sort of shenanigans are pharmaceutical companies looking for? Extensive testing hasn’t worked in MSers favour so what sort of dark hell might be unleashed without the double blind placebo controlled ‘gold standard’ in place?

Colorado have reported on this idea in May which a bit puts paid to my theory that it was a fine piece of distraction from the venal behaviour of drug companies not investigating an African disease until it starts threatening the monied, developed world.

My first thought was that it was a bit of damage limitation from the pharmaCos to distract us from the fact that curing a killer like ebola just isn’t financially worth them even starting (do they have a union that does pr for ALL their questionable/commercially sound behaviour?).

Bloomberg Businessweek reported on the plan in August.

Why does the treatment of the disease Ebola have any relevance to MS?

Don’t worry, I’m not connecting the two in a  symptom sort of way but I believe both conditions have been poorly served by pharmaceutical companies.

I really feel quite uneasy about the treatment that pharmacos have meted out on MS patients throughout my 20 year ‘MS career’. When I couldn’t get hold of DMDs, before they were available in the UK I wanted them very badly, then NICE was born (especially to avoid the ‘postcode lottery’ surrounding MS prescriptions) and they became available so I read up the trial results as I’ve mentioned more than once.

In my mid 20s with not many regular symptoms it didn’t make sense to me to take multiweekly injections for a less than 50/50 chance of benefit. Other than a couple of goes at steroids to get back my ability to walk again after fresher’s flu went bad in me I have stayed pharma free.

I think I’ve talked about a vascular aspect to MS having been spotted by Charcot in the 19th century. He gave this disease a name and yet this aspect of our condition is barely being investigated. I’ve certainly mentioned my own taste of this theory in Brooklyn a couple of years ago, where an ultrasound was taken of my jugular veins from the INside where a valve was seen to be blocked shut.

We have more and more appropriate imaging technology since noticing in 19thC postmortem brains that veins might be implicated. Why is this theory not investigated further with the full force of what we have at our disposal? It doesn’t help to get too stressed about it but, no matter how many times I stamp my feet, life STILL isn’t fair. My blood gently simmers at the injustice of our woefully inadequate treatment from the people we’re supposed to trust. I feel for those who live under the shadow of Ebola and the horrific injustice they face every day when they continue to see no effective science being done in their name.

I’m glad my father encouraged me to question everything (perhaps not consciously but he did). I think it’s stood me in good stead for identifying folk’s motives. Although I s’pose, with pharmaceutical companies you don’t have to dig too deep to see the profit motive.

Perhaps I’m very wrong though? See, that ‘question everything’ trait is shining through!

Improving Prognosis?

The image of ivy is from my back garden and illustrates one of the few things that truly thrive there.

NIHCE have issued guidelines to address which treatments might be worth the NHS providing for MS patients. Aside from the disease activity going on in our brains we have similar symptoms to many other chronic conditions. Some of those symptoms are brought on by our bodies becoming increasingly inactive due to deterioration in our brains. It’s even been cheerily suggested by a London research establishment MS could be rebranded as a form of dementia. With this in mind I thought I’d share a link I was sent that was made with seniors in mind but could be useful for anyone that doesn’t move as much as they used to.

  • NIHCE have suggested no longer financing injections of B12 to try and reduce fatigue (unfortunately, I’ve never been able to get hold of any through any number of GPs) but perhaps with more people asking for some basic maintenance strategies from their GP things might change?
  • Vitamin D supplementation is involved in many processes carried out in the body every day and helps regulate the body’s own immune activity. it might be wise to address both of these deficiencies in the general public aswell. A GP can carry out this test.
  • On the pharmaceutical side NIHCE would also prefer not to pay for Fampridine and Sativex. There wasn’t enough evidence to show statistically significant efficacy for all four supplementation approaches.

ivy up close

News of the Commonweath Fund’s conclusions about the brilliance of the NHS in a global league table of developed nation’s healthcare systems (as long as you don’t have a long term condition) I’ve mentioned in another post. The NIHCE use all sorts of equations and algorithms including weighing up loss of tax earnings for the country if these citizens can no longer earn and contribute. Perhaps  the measure for the wellbeing of patients with long term health conditions needs to be adjusted?

I’m conflicted about withdrawing a therapy that has worth for some people but then I remember that the NHS doesn’t have bottomless pockets and whilst some people are missing out on marginally increased walking speeds, baby units and end of life care could perhaps benefit from the spare cash? I’ll still be buying my own supplements even if it doesn’t clearly contribute to improving prognosis  on the NIHCE scale of improvement as I’m choosing to believe when their effects are all added up, these therapies are worth applying to help keep my body working as best it can. I think this outlook involving positive thinking may bring its own benefits.

A UK MS researcher agreed that good things appear to happen during O2 therapy after being asked for his opinion on a study on this website where Israeli long term stroke patients found new brain cell growth/synaptogenesis after receiving intensive O2 therapy in a decompression chamber. There are things we can do for ourselves that might help a little. I appreciate this isn’t a very rock and roll closing statement but it seems we, as owners of chronic conditions are in charge of improving our prognosis.