Sunday, 6 April 2014

The World according to Dre

Dr.Dre has a fan club...who would have thought rap was so popular? Based on recent comments


He thinks the BLOG is more M & S than MS and we are selling a fanatsy, or is that Sci Fi?

Is that what you think?

Make sure you do your homework.....all treatments come with side-effects....know the risks of your actions as best you can and remember you can always get second opinions, as not everyone's world views are the same. 

The Ostrich's is not a particularly good one

33 comments:

  1. But there is too little data to assess risks properly. e.g we do not know long-term side effects, there is no reliable disease prognostic tools to say where would you be in N years without/on less effective treatment; and on second opinions... As of my experience they are often more confusing then helpful, and again, we don't have neuros with crystal ball to know your future in the absence of data

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    1. I agree, that is why I said as best you can. Maybe Pharma should be made to collect such data. Countries with effective data bases may be able to answer this, but they are few and far between, which is unbelievable in the Computer age.

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  2. I was shocked at first to see Dr. Dre on this sight. He certainly does not look like he has ms, but I guess most of us don't.

    I wonder why he is so silent about ms in his public life? He hardly mentions it. It would be great if he could focus some of his celebrity status on MS causes instead of trying to be a tough thug.

    http://www.dr-dre.com/

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    1. I think it is fair to say that Dr.Dre of Beats and Rappin fame is American and may or may not have MS. I suspect may not. People chose to be in or out of the closet. It is their choice.

      I suspect that Dr.Dre on this web site is not American and is British, Bruv . His or her real name is not Dr. Dre or Andre Romelle Young maybe be more Rommel and suspect that both of the Dres' have not earned a PhD

      If you hunt through the comments you will find that the moniker has been adopted as some form homage to the name sake.

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    2. Never the less, if the black American Dr. Dre and the British Dr. Dre got together they might do some good. Maybe new organizations; "rappers against ms" and "concerned citizens against Big Pharma" comes to mind.

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  3. Now, now, MouseDoc, this is getting a bit too much. I'm honoured you're devoting entire posts in gratitude of my great wisdom and intricate intellect, but haven't you got a real job to do that involves trying to understand the pathology of a disease? All this mocking extracurricular activity is beneath an educated, middle-aged, PhD doctorate holder like you.

    Yup, I remember your cousin from Lexie and mine English class. She was a huge Spice Girls fan kind of looked like you in a skirt. Gorgeous, she was.

    And to the well wishers and haters of mine: Ta very much. I assume those accusing my comments of being long-winded are either Americans for whom written words are like kryptonite, or Brits that watch too much ITV. My growing fandom because of this blog is most humbling. My mum says she spied groupies hanging around my front door the other day. They must have been appreciative MSers who love a well-groomed and charismatic bloke.

    Kiss you on both cheeks and bid you farewell. xx

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    1. Oye! I'm not American. Not British either, never watched ITV . And I love long reads of all sorts.
      But I'm not a fan of the Dre school of writing
      Even if I was, as the other Anonymous said, blog comments are not the place for op/eds.

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  4. Dre please set up your own blog, you are the only person who speaks with reason.

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  5. I thought this blog was about research and therapies on MS if I wanted to read op/eds I'll pick up the NY Times

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    1. Whoops. You took a wrong turn. I think you're looking for the National MS Society website. Happy people in their wheelchairs having picnics by the lake.....yes?

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    2. Slick rhetoric is nice but in the end where does it get you?

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  6. What about a special section on the blog where Dre, the CCSVI nutters or any of the other misfits are allowed to express their opinions. Maybe you could call it "The Crazy Corner" and have an instant link to it at the top of the home page. It may provide for some entertaining reading.

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    1. "Compost corner" for the potty-mouths not a bad idea but there are gems littered throughout the blog

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    2. It's funny you call Dre a misfit because believe me when I tell you that the wider British neurology community views Prof G and co. argument on early and aggressive treatment as very unpalatable. If anything this blog's views are those of misfits on the peripheries of acceptable MS treatment.

      Dre has been a critic of CCSVI as I recall. It seems wrong to dump him in that camp. He is the reason why I look forward to some posts because his commentary is always entertaining. He annoyed me at first and sometimes seems unreasonable, but his contribution is usually welcome.

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    3. ".... wider British neurology community views Prof G and co. argument on early and aggressive treatment as very unpalatable."

      Not sure if you are correct here. The fact that the EMA and now NICE have given alemtuzumab an early first-line license tells you that the wider British Neurology Community are the misfits. Britain is way down the league tables when it comes to looking after its people with MS; this is something we should be ashamed of.

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    4. Sorry to put Dre in the same came as the CCSVI nutters. I don't know what his position is on this, but I noticed he does share some if their sentiment regarding neurologists and bug pharma being part of the problem in MS. As someone who was struck with ADEM before being diagnosed with MS I can sympathize with those msers that have highly active disease. ADEM is the most aggressive demyelinating disease there is. You need to stop damage as quickly as possible and you don't have a lot of time evaluating if a first line drug is going to work. If you are in this position you are willing to try anything and I don't think Dre can contemplate what Lemtrada can mean to some people. HSCT would be better, but the approval of this drug gives a lot of people hope. Maybe Lentrada is not the best therapy for most msers but it could be a savior to those with aggressive disease.

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    5. Re: AnonymousWednesday, April 09, 2014 11:43:00 am

      ".... wider British neurology community views Prof G and co. argument on early and aggressive treatment as very unpalatable."

      So do you and "the wider British neurology community" regard the general stance of "let's all sit back and do nothing for people with MS" as palatable? That seems to have been the attitude here for decades. Sitting back and doing nothing for decades will lead to people ending up in wheelchairs.

      The general attitude to MS treatment in the UK is distinctly unpalatable. I think neurologists here were always going to have big trouble adjusting to any disease that might actually become treatable, as they have treatments for so few other neurological disorders. They've often been extremely good at diagnosing and documenting people's decline into disability or death and have become accustomed to shrugging and not doing very much about it. Maybe everyone proposing early aggressive treatment is entirely wrong, but to sit back and do nothing and not offer anything up seems to be an act of complete hubris. There are many with MS who will be willing to go for the 20 year experiment (I agree that at the very least registries would be required) of trying 'highly effective' treatment to see if it has long term benefits.

      I'd like to know what your alternative is? If you have MS, you're welcome to take that option, and for others to make their own choices.

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    6. Going off on a bit of a tangent here: I heard of a young doctor who wanted to specialise in Neurology and then had a change of mind and chose a different field instead. He said he would rather work in a field where patients do get better. Neurological problems are mostly all incurable or even untreatable

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    7. Relapses and progression are not simpatico. If it was then PPMS is not a multiple sclerosis disease. To fend off relapses does not evade progression. 10% to 15% of MSers will never progress but that is down to biology, not DMTs. To insinuate otherwise is unprovable. Neurologists know that. No neurologist I know of in the UK is complacent. To say otherwise is unacceptable. We don't know how to identify who will benefit from the high risks that come with Lemtrada. Caution is professionally tantamount.. People need to understand that.

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  7. The neurology community view.......

    i would be very grateful if you could share your source of information. Is is a personal view your neuros view. Maybe you are a neuro you can reveal a source without giving away who you are. This is very important to know because i know some neuros are risk averse so the question is how many. The data should be there for tysabri and lemtrsda how many people treated early are NEDA verses how many late are NEDA with this data you can make a choice. With that data a neuro can help you make a choice


    so go on give me the source because this is the type of info we need

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    1. Anon 18.47 said

      I know of two neurologists, one in XXXXXXXXX and the other in XXXXXXXX, that have empirical data, one of whom showed me, revealing that on a long enough timeline all MSers on even the latest treatments will become progressive. Furthermore, one neurologist said that despite NICE's green light, he wouldn't give Lemtrada to all young MSer asking for it. The risks are magnificently potent. This is why the FDA remains wisely resistant. For professional reasons I cannot disclose any names. Sorry.

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    2. Well let that Neurologist discard the amphioxus mantel, gain a spine and publish the data.

      We are going to die one day the question is when and how far in the future after all life is a sexually transmitted disease with 100% mortality.

      The figures mentioned by Dr Coles yesterday was no where near and ai mean no where near 100% conversion in his cohort...time will tell.

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    3. The majority of people diagnosed with MS are of an age that they are allowed to make decisions for themselves. There is massive uncertainty in many many approved medical treatments (and often no good evidence base for many accepted medical treatments). What many but admittedly not all people want, is a frank discussion with their doctors about potential benefits, potential risks *and* the uncertainties involved in doing nothing/doing option a/doing option b... and so on. Paternalism should be dead.

      Nothing in life is certain, but what we need is honest discussions to occur so that no matter what option a person with MS picks, they can at least look back at it and decide that it was their own choice and that they made the best decision based on the available information at the time, without regret.

      This will not be what everyone wants, but most people diagnosed with MS are not children. They also won't necessarily feel as clear headed about these decisions later in the course of the disease as they will have at the start as the disease is downright nasty.

      I speak as one who has sat on both sides of the fence.

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    4. You are citing one sample. Dr Coles' results have to be replicated a few times over to find out for sure.

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    5. It should be a matter of clicking a computer button as paper records should have been converted and each neuro will have their records it is unbelievable that full registries are not up and running in many places. However, as I do not have access to NHS computers I can't have a look.

      "RMS typically begins in the second or third decade of life and after a medium time to conversion of around 19 years approximately 70% of the patients subsequently develop secondary progressive MS (SPMS). The rate of conversion to SPMS is approximately 2-3% per year." (Data before second generation of DMT)

      We do need to know what happens pre and post the highly effective DMT. The data on tysabri should be to hand. However we need ZeTo to maintain NEDA and when the drug was delivered. I can predict what will happen but lets see the data.


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    6. I know you can't comment on Dr. Coles unpublished data, but has he given an indication of when it will be published? Is he still looking for a publisher, or is Genzyme Sanofi waiting for the outcome of the FDA re think before letting him publish?

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    7. The problem is you have data of a treatment and nothing to compare it to.Do you base it on old Canadian data before the invention of DMT. The Cambridge group have generated a comparison group that puts their data into some form of perspective, but the referees of the publication are arguing they would not accept this for a phase III trial so why accept it now.

      The data has already been submitted to a number of journals and a problem of the control group has I believe reared its ugly head a number of times.

      As mentioned before, academics get judged on where their papers are published and so you do go through a few journals some times until you get bored and just publish it. After all generally but not always, the paper gets seen on pubmed no matter where it is published. If it is in the big five-ten people take notice, if not them maybe not.

      The Cambridge Group have shown that they have the stamina...as can be seen by the length of time it took to get Alemtuzumab developed. So you will have to wait until it is published or reported in an open meeting where journalists are ready with pen and paper of should I say twitter.

      This is Cambridge UK data outside direct control of Pharma, if Cambridge USA were more for coming with their data, we would know more....however I think that the data supporting licencing has to go into public domain now so maybe one interogate data to see if their are predictors of NEDA.

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  8. Britain is towards the bottom of the pile when it comes to treatment ad the post about NEDA an oz where their doctors thought the softly softly approach was unethical.

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  9. Dre is not a misfit he speaks alot of sense...........sometimes

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  10. Nowadays everybody wanna talk like they got something to say
    But nothing comes out when they move their lips
    Just a bunch of gibberish
    And mother#@%&rs act like they forgot about Dre

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    1. Dude! Long live all the Dres!

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