Last reply 2 weeks ago
Complicated and Overwhelming

I have been diagnosed with RRMS for 25y now. I have had steroids, Beta-interferon (Rebif), Glatiramer Acetate (Copaxone) and now Dimethyl Fumurate (Tecfidera) from the DEFINE trial onwards. I take high dose prescribed Cholocalciferol (Vitamin D3) 10000iu every other day in order to keep a level in the body of approx 5000iu as a constant, and after a filthy bout of neuropathic pain I am now prescribed a moderate dose of Duloxetine which is actually an anti-depressant but has been shown to work for neuropathic (I call it phantom pains) pain as well. I tried the usual one whose name I forget but theat sent me to sleep so I lobbied for a change. Additionally, I was prescribed Modafinil a while back for my fatigue.

I used to work in pharmaceuticals on the business side, hence my choice of generic names first as that helps clarity. Different proprietary (Brand) names are used in different markets and I can’t keep up with what is what.

In the last 5y I have gone to university (odd experience at time for an old guy with a kid) and I recently married again. I ended up doing an MSc in Politics with a huge statistical and research element. Stats being numbers the concepts cross subject areas.

One thing I have noticed over time is the bad effects the lack of understanding can have.

Receiving a diagnosis is a scary thing. I get it. I dealt with it by pretending nothing was wrong for the first five or so years. Just plain denial. Now I’d like to help people, where possible, be able to get their head around the information they hear/see with regards to MS. So much is just weak and untrue it beggars belief.

Whether you are newly diagnosed or a long-term sufferer the MS treatment world can be a baffling one. Staistics this, data that, AI is changing life, PML (Progressive Multi-focal Leukoencephalopathy in case you were wondering) as a terrifying sounding side-effect and so on.

How do you know what to make of everything? Concerned friends and family, and sometimes complete strangers, seem to know about the best things for your MS, without knowing the details of your diagnosis and having specifc (mediacal) training in neurology.

I am happy to try and answer a question – PM me if you like – but more importantly, read this. I didn’t publish this, but it IS a great guide for the layman. It will help you ask better questions and get better answers. Knowing the basics also works as a brilliant Bullshit Detector too. Something you’ll need to be able to develop now you have been chucked into this world of medical attention, treatment options and so on.

Please read it. Any issues or questions then DM with the page number and I’ll explain it to you.

http://senseaboutscience.org/wp-content/uploads/2016/11/Makingsenseofstatistics.pdf

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strictlysoca
2 weeks ago

This is really great. I get quite irritated by what I perceive as irrational decisions when folks can’t get it (whatever “it”is). Go you


highlander
2 weeks ago

@dominics
Mark Twain or Benjamin Disraeli
Plus many others have another way of making a judgment on this topic.
If you’re clever enough and wealthy enough you can convince most people most of the time to you’re way of dealing with things.
Whether they are right or wrong only time will tell.
Or a massive shift in opinion.
Keep smiling
I used to be uncertain but now I’m not so sure.


dominics
2 weeks ago

Dear @highlander,

I have read and reread your reply. I am obviously not clever enough as I don’t get it 😉 I am not sure what an American Author and raconteur,and a past British Prime Minister have to do with anything. I am also uncertain what the threshold for wealthy is but I am prepared to guess that I am not wealthy. By any stretch.

If I am guilty of trying to convince people of anything it is of the importance of evidence and the need (even if it wasn’t a life goal before diagnosis) to be able to understand what is to many an entirely new language. By doing this they can make informed decisions about their care, have better informed discussions with their care team all with the aim of ensuring they are getting the best care possible.

Ignorance is not stupidity and ignorance (of facts, data and stats) is not a good place to be.

It is petrifying to actually receive a diagnosis. If I can help anyone wade through some of the stuff I often had to figure out for myself, then I am happy to do so. I’ll plead guilty to that.

Opinion doesn’t really cut it in relation to science. Great lengths are gone to so that opinion cannot influence research outcomes. Opinion is great for political commentators.


highlander
2 weeks ago

@dominics
No offense intended….
Mark Twain and Benjamin Disraeli are both accredited with the saying.
Lies damn lies and statistics.
KBO


dominics
2 weeks ago

Not at all offended. Was slightly baffled and felt I hadn’t been very clear! The academic in me strives for clarity, often at the expense of brevity.

KBO indeed – Wasn’t that Churchill, or did he appropriate it from Disraeli?

Bad stats are bad stats. twain was correct when he said that.

Thankfully, in clinical trials these days it is far harder due to the transparency requirements. http://www.alltrials.net and Ben Goldacre are superb at keeping them honest. People mangle, torture and manipulate them. Sometimes on purpose and sometimes unwittingly. I write about this http://www.theproblemwithdata.com

Science done well is great. Done badly or ignored, very dangerous indeed.


highlander
2 weeks ago

@dominics
Wholeheartedly agree with you.
But I am always very conscious of the fact that it’ll always be driven by money.
Certa Cito


dominics
2 weeks ago

What will be driven by money? Research?

Pre-AllTrials I knew of some shockingly poor practices driven by industry. It is a great deal harder, nigh impossible in the developed world, to do this now. All data is published, good or bad.

Certa Cito – the Royal Signals Regiment?


highlander
2 weeks ago

@dominics
Swift and sure
Or the modern day interpretation
Sh!t or bust.
Keep smiling


dominics
2 weeks ago

Honi soit qui mal y pense


highlander
2 weeks ago

Evil to those who evil do.
Or word’s to that effect.


dominics
2 weeks ago

Correct 😉 Seen the odd cap badge in my day.


wilf
2 weeks ago

That’s good news, 25 years and still RRMS. Hope for us yet.
I’ve just been forced out of the 4.5 year denial phase by numb feet!


mermaidia11
2 weeks ago

@dominics
* “Facts are stubborn things, but statistics are pliable.”
*
“There are three types of lies — lies, damn lies, and statistics.” …

“All the statistics in the world can’t measure the warmth of a smile.”

We are human, we have MS , not mental incompetence….the site is here to openly ask questions so all can benefit, from the ansas; not have private tete a tetes with a pharma politician statistician.

You’re havin a giraffe mate.

Concentrating on quality of life and helping others with facts,from a place of radical transparency and honesty is where we are at here bro; and if you understood us at all; you wouldn’t have posted that tasteless cartoon either.

One of the most patronising posts I have ever read

MermaidyLadyBAHons (Law) ; LCCI;BAPC; CAE.


dominics
2 weeks ago

Who said anyone was mentally incompetent?

I’m not sure how an offer of help has elicited such an aggressive response.

The cartoon was from a similar style MS Community to this but in the US. Someone newly diagnosed using visual expression to come to terms with it. I suggest you go straight to that site and take it up with the cartoonist.

The lengthy post came after discussions with people on both sides of the fence -Nurses and patients, of whom I’m one- the things they struggled with. The unfamiliarity It seems that you are commenting without reading the article. If you were to skim it and take issue with it then I suggest you aim your invective towards Ben Goldacre and the team at AllTrials.

If offering to help someone who feels that they are not clear on separating facts from opinion is bad then so be it.

Out of interest; how does radical transparency differ from plain old transparency?

This unpleasant diatribe is delivered as if I differ somehow. I have MS, it is a bugger, it has affected all aspects of my life. I have emotions so when someone is deeply unpleasant it hurts. You obviously have an agenda, one I don’t even wish to understand.

I am not sure of the need for postnominals, especially on here. But hey, what do I know? Not much apparently.

Good evening.


highlander
2 weeks ago

@mermaidia11
Question for you……are you so aggressive in chambers or just in the courtroom?
None of us here wants to be here but we are all entitled to an opinion.
I may have not agreed with the post but I was never rude nor condescending towards anyone.
And I’m sure @dominics had no intention of upsetting anyone including me which he didn’t and you.
That’s just my opinion about the recent comments made by me you and Dom.
I always say this…
Keep smiling!
Que bono?


mermaidia11
2 weeks ago

‘He doth protest too much’ springs to mind!
@dominics
@highlander u yourself called into question the validity of statistics- but doing it tongue n cheek makes that ok, I’ll remember that in future.

So sorry for coming across as aggressive, that was not my intention, I call a spade a spade and the lawyer in me deals in facts – not statistics, which as l said can be massaged.

Forgive me if I called into question your motives @dominic; a pharma person privately advocating statistics, and the study of such; to apply to real people and real lives – seemed inappropriate to me, given that the statistics don’t reflect or take into account side effects, long term damage or effect on quality life.

I’ll always question and offer a different perspective .. And fatal brain virus as a side effect seems a big risk, no matter which way the odds are stacked or the numbers come out.

I did read your attachment for the record. I would never comment on anything without reading it first, and I guess i interpreted it wrongly. I won’t elaborate (lest I come across as aggressive ) I’m cynical after years of practice, apologies.

As for the cartoon; given that recently we have heard of not one, but two people who are staring death in the face; the ‘cartoon’ of the grave was in mind, bad taste.

Cartoons suggest laughs , and this wasn’t funny or helpful in my mind at that time.

I’d also say that for many young people, they need the support of their family and don’t have a choice about living with their parents, before during and after diagnosis- and are better off for doing so. It’s not a joke, it’s a reality and the ‘cartoons’ brought me back down to earth with a bump if I’m honest.

So Sorry for being over sensitive and aggressive; but I’m a passionate gal and I don’t tend to take things at face value – but I only have peoples best interests at heart, as you have. Apologies x


dominics
2 weeks ago

No harm no foul! I am not nor ever was offended.

Statistics can be bad or good. It is unfair and innacurate to dismiss them in the way you do. Done correctly it is the outcome of analysis of raw data to enable judgements and comparisons

That is the point I am making and any offer of help I am advancing. Knowing what are accurate and reliable statistics (a fundamental part of my MSC in research methodology and dissertation) is crucial. Sorting the wheat from the chaff if you like.

MS seems to attract a vast amount of fringe charlatans all trading on people’s desperation for a cure. Often at great financial cost for nothing. It pains me to see people’s understandable desperation being so cynically preyed upon. The pseudo-scientific claims use unreliable statistics to claim efficacy. As a lawyer, I imagine such distortions must grate on you too.

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