The MS treatment I want to explore

deflated scull and crossbones balloon

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!

Author: deezll

I have spent half my life with a chronic disease and have spent a fair amount of that time addressing some of the common symptoms that a long term condition can bring. Living well is a smart choice and we all know it makes sense.

6 thoughts on “The MS treatment I want to explore”

  1. as Dr Schelling wrote:
    “In view of the given facts we must ask ourselves whether the MS patient’s shameless exploitation for senseless profitable drug experimentation, grounded in an illogical MS ‘definition’ and ‘identification’ does not form an ethical issue”

  2. this is how Professor Alastair Compston, Head of Neuroscience at Cambridge treated Dr Franz Schelling who actually does know what is going on

    and here are Compston and Coles reaping the rewards – $6million from Genzyme – for recycling a £2000 a year cancer drug into a £56,000 a year MS drug

  3. It is outrageous that here in Canada, people with MS cannot even get their neck veins looked at for blockages. We had to go to California. The CCSVI condition is even stranger than just blocked veins or blocked valves. My wife did not have blocked valves. The surgeon told her after the operation “your veins were fine” but he ballooned her veins to treat “autonomic dysfunction” which he diagnosed based on her symptom set and a heart stress test when she exercised. (Her heart did not speed up when she exercised). The jugular vein has little stretch detector nerves built into its walls. With the ballooning, maybe for the first time in 4 years, these nerves sent a signal to the brain! Within hours, her right arm was warm to the touch (first time in about 4 years) and she had perfect balance! And she was able to empty her bladder. I would have not believed the improvement if I had not seen it with my own eyes. People are never going to know about these results if we do not spread them. Can angioplasty repair myelin coating around nerves? Of course not, so this improvement means that some of the symptoms are NOT myelin related. AT ALL. But they are clearly related to blood flow. Brian

    1. same in the UK Brian, It seems the private insurance model in the US works best for chronic conditions. See an earlier post entitled ‘The NHS is tip top… and not’.
      Money, much like alcohol in the Simpsons could be the cause of and solution to all our problems?

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