Tuesday, 10 May 2016

ClinicSpeak: should we stop prescribing DMTs?

Should therapeutic nihilism rule the day? #ClinicSpeak #MSBlog #MSResearch

"A few commentators (trolls and non-trolls) have suggested our Blog is a proxy for Big-Pharma as we are far too pro, prescribing, high-cost DMTs. I don't agree with this criticism because; (1) when the need arises we take an anti-Big-Pharma position, (2) we actively support and promote off-label prescribing, (3) we try to manage expectations and don't pull our punches, (4) we don't always agree with each other (there is no party line) and (5) we declare our conflicts of interests. Our posts are what they are, opinions based on personal interpretations of the data. If we lack credibility please ignore us; a blog is just a medium for communicating our position. Similarly the guest posts are the opinions of the guests and not ours."

"It is important to stress that this blog is run using freely available software provided kindly by Google. We have deliberately kept it advertising free, despite numerous opportunities to run paid-for-posts and other adverts. As a group of bloggers we devote significant amounts of time to keep the content current and hopefully useful to the community. Please note we commit a significant amount of our free time to this blog. As we are running the blog to update people with an interest in MS we would find it very difficult not discussing DMTs and treatment strategies."

"For those of you who 'believe' DMTs don't work and make little difference to the course of MS need to propose a testable hypothesis. This blog is based on science and not religion. The difference between the two processes is quite distinct. A belief system cannot be challenged, but a hypothesis can be tested and then rejected, or accepted, based on a set of experiments. The latter is how scientific knowledge accumulates over time."

"The following hypothesis addresses the position proposed by some readers that relapses don't count and that DMTs don't alter the progressive phase of the disease."

Null hypothesis: The proportion of people with relapse-onset MS, on DMTs, entering the secondary progressive phase of the disease has remained unchanged over time.



"Do we have enough evidence to reject the null hypothesis? If we don't then we should accept the null hypothesis and stop prescribing DMTs."

CoI: multiple

43 comments:

  1. Ignore the nay-sayers, Gavin. They are tragically ignorant and/or trapped in the netherworld of paranoid conspiracy theories. As a person with MS, I really appreciate your work and your blog.

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  2. Should therapeutic nihilism rule the day? No! The evidence is already there to support DMTs, just look at the number of peer-reviewed journal articles that show that a delay in starting DMT can worsen the course of MS. Also, now the long-term data is coming out for the more effective DMTs, the EVIDENCE is there for starting a highly effective DMT early. The pharma industry is run in the most undesirable way possible, but that does not mean that the treatments they producing are not effective. Please, keep pushing early effective treatment, you are empowering and giving hope to a generation of MSers.

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  3. Please know that your blog is making a difference. I'm an Australian female, diagnosed RRMS 2 years ago, one new lesion on interferon & zero disability. Information & discussion on this blog played a major part in my reading & research & my decision to have my first course of Lemtrada this year. Without this information, I likely would have escalated to an oral DMT & potentially missed my window of opportunity. I'm confident in my decision to front load my risk & this blog empowers readers to be their own advocate and make informed decisions.

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  4. Yo, Don Giovannoni , remember me! It’s your main dude, Dre. The geezer who gives it breezer. The bloke that’s never broke. The kid that holds the world of Big Pharma to tasker. It’s me, baby. What’s up!

    I can see that the year has slipped into 2016, yet Don Giovannoni is banging his ‘oh, these toxic neo-DMTs are pretty groovy, baby’ drum still. That’s what I love about this blog. The world moves on yet the lads at Barts and the Big Smoke remain stuck somewhere in the noughties, drinking alchopops and watching Big Brother on Channel 4.

    Bro, these drugs are pants. They always have been, bredrin’. You cannot fix a disease when you still remain all Alicia Silverstone of why it’s happening. You don’t know why MS happens, clonal. You do not know what is driving it All that public money (Big Pharma didn’t contribute a bean, I noticed) you’ve ploughed into the Charcot was a total waste of funds, an international embarrassment every bit as humiliating as the CUPID trials four years ago that your bosom chums, MouseDoc & Mini-Mousedoc, helmed. My words may seem a tad harsh like, but you folks have seriously got stuff wrong too many times previously. You’ve kinda failed a lot, dude. Therefore, you can understand our reluctance to wholesale buy your pro-DMT mantra.

    But I’m back, baby, I’m b-b-b-back. Let the good times roll again. We’re gonna be giving it large and havin’ fun just like we used to. Love you, man.

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    Replies
    1. Good to have you back Dre, your snarkiness is always a joy, a touch of the cacumen campana.
      You are (as always) quick to reach for the broad brush but re CUPID, yes the headline was it failed BUT there was evidence of neuroprotection in those with lower EDSS but the study was underrepresented in this group.
      PS Us meeces did NOT helm the trial (being non-clinicians), if we had perhaps the result would have been more positive ;-)
      Still, we'll keep on keepin' on, spurred on by your ceaseless enthusiasm for our work.
      Pob hwyl

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    2. Oh my gosh! It's Dre. Where have you been???

      So cool to have your input again.

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    3. Re - "drinking alchopops and watching Big Brother on Channel 4."

      Excellent summation of the years 2000 to 2009, Dre. Throw in a diet of KFC too. The noughties were weird in Britain.

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    4. lol is this like the stockholm syndrome or something?

      Bojana

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    5. If DMTs not say that the work of a doctor who then decided to become athlete and epiphany decided to stop its DMT? Everything was fine until the bullet train of MS hit her again in less than 02 years she stopped garbage Interferon, and this time with more power.
      Yes, the science does not yet know what causes MS but because to do real science in this world "contemporary" one needs a lot of money, and this is very complicated, beyond the egos fight that exists among academic- scientific. To gather real efforts for example to find out what causes the disease, it certainly would have happened to the both of technological resources that we have today.
      However people still think we are in the Enlightenment period or post-Enlightenment in which where "it hit the foot" and was a new discovery, truly scientific epiphanies in every corner of the planet, we still have the idea of ​​Neurology being taken in times of Charcot, he was and was the face of Neurological Medicine but would have exceeded the immensity of what has come to do? Would he have realized that MS is autoimmune relationship?
      Of course we're not, we arrive at the point of Genetic Science and nanoparticles, where everything happens in "atomic" level. No longer gives more to imagine science as "to open any body" and shouted "Eureka, the answer is here!"
      But everyone must have drawn that there is a clear link between autoimmunity (genetics), low rate of vitamin D and viral infections! It is increasingly clear that, just do not focus on it because I do not know or do not want or is the giant wheel damn money, investment, blah blah blah.

      In Brazil, for example, we have a TV actress who discovered MS around the year 2000. She neglected all treatments because she did not accept the disease (I know who is accepting a disease, but the best thing to do is to face it and go it is, unless you want to stay debilitad or die ...) and has had a 07 outbreaks in these 15 years, all very strong, all affecting cognition it (difficulty in reasoning, speech , etc., all very clear). You know what she did now? Did the transplant did HSTC because she knows that the disease is evolving, she does not want to treat but without taking action there would be no possibility of her return to TV ...

      I'd rather be in some DMT than nothing, because so far not know anyone who is out of a DMT and that within 05-08 years crap MS has not returned in full force. If Big Pharma already know what causes the disease there is another matter but we can't say that DMTs do nothing because it is apparent that they do bad with them worse without them...

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    6. Dr. Dre's insulting comment should have been disallowed. He is wrong. He knows nothing. The blog was better without his comments. His pro-disease mantra is most upsetting. Dre's philosophy is to let MS do its worst and to live with it. How is that helpful?

      Can't stand him/ her.

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    7. You don't need to know how a watch works to tell the time! Same applies to MS, the cause is irrelevant if treatments work. In time, the treatments might lead us to the cause!

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    8. Personally, I agree with you but some don't and I think its good to have a debate now and again despite the negative side-effects of raising your blood pressure. Now and again he/she has a good point, not in this case though.
      The caveat is we don't know whether Dre has MS or a family member/friend has so view his/her comments accordingly.

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    9. My comment was directed to Anon 1:58.

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    10. lol you've already had the tired old debate - http://multiple-sclerosis-research.blogspot.com/2012/03/guest-post-prof-george-ebers.html

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    11. I thought that was rather a good debate, with some great points made in the accompanying comments.
      Thanks for reminding me lol (lots of love).

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    12. Yes 'The blog was better without his comments'

      Yes 'You don't need to know how a watch works to tell the time'

      Yes 'the cause is irrelevant if treatments work. In time, the treatments might lead us to the cause'


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    13. This comment has been removed by a blog administrator.

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    14. Re Dre:

      Have no issues but would wish he keep assaults of people off the table. Constructive dialog is good, debates are good, personal targeted statements that are not productive, even hurtful are not only unwarranted but have an effect on people here. Even if it does not bother Prof. G it does bother readers who attend to better interface to the informational and research side of MS.

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    15. Oh, Dre is the man. I love his approach to debating. I'm laughing my head off at the Alicia Silverstone remark. Bloody brilliant!

      Stay with us, Dre. Love your comments.

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    16. My fiance' just made me laugh... He said, "Relapsing remitting comes to mind and wants me to refer to him now instead of Rick (his name, software engineer) to Don Codamechi"

      :P

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    17. "I'm ’m b-b-b-back"...Just lost election for Mayor of Bradford?..or are you really Zac Goldsmith and now have some free-time on your hands?
      On parole? Just got back from some far off land after a bit of HSCT? Only joking I'm sure your fans will be happy and for the non-fans you won't care less:-)

      However, just so you know Charcot 1 was paid for my US Merck, so it was not public money.

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    18. "I'm laughing my head off at the Alicia Silverstone remark."

      An unfortunate consequence of not being treated?

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    19. That was a good one Dre. Perfect!

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    20. The analogy that you don't need to know how a watch works to tell time is a pretty rediculous comment as it pertains to MS

      It should be more like if your watch is malfunctioning and giving you the wrong time, you have to understand what is the problem for a proper analogy.

      What Don G and the rest of pharma have essentially done is stop the watch by promoting immunosuppression therapies to stop MS, but this doesn't really solve the problem, it only creates new ones (you can no longer tell any time).

      But this is where the safe bet money can be made and it looks like there will be no real cure or therapy for MS because no on wants to find out how the watch works. There is no money to be made going this route.

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    21. With respect Anon 12:04:00pm, it isn't as simple as spending more research money to find the cause of MS. Just look at the oncology world. Vast research budgets that eclipse our little corner of medical science. Yet all that time and money later, and still nobody can pin down exactly what causes breast cancer to happen in some people. However, what they do say is that if it's caught early enough, chemo does a pretty good job of fighting it. So the watch analogy seems okay to me.

      Now I absolutely agree that more neuro research money should be directing to looking for a cause, but we can't pretend that it would necessarily make a difference. There's every chance they could quadruple efforts and still not identify a definitive cause. It's basically a game of luck.

      And for those of us fortunate to have early stage RRMS, the new generation drugs can potentially make a big difference, just ask someone seeing the benefits of tysabri or lemtrada whether they think the research budget for these drugs should have been spent on fruitless EBV studies instead?

      Basically... it's really complicated.

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    22. I agree with anon 12:04 if no effort is made into finding the cause, generations of people will be reliant drugs and treatments. What's wrong with wanting to know the cause? where would we be if there was no interest in trying to eradicate TB, Polio, Smallpox, anthrax and now a vaccine for meningitis coming along. Prof G is doing his best with the tools he has, but it can't be the long term answer.

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    23. The cause of MS is known. Doesn't anyone read? It is an autoimmune demyelinating disease of the CNS. The cause is auto-reactive lymphocytes targeting myelin of the CNS. Treatment is dampening or resetting the aberrant immune response.

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    24. So how does one stop developing MS in the first place?

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    25. Widespread vaccination against EBV?

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  5. As well stop prescribing DMTs? Disregard the negative comments Team G.

    I can speak for myself just so yesterday I got my picture examination result by MRI, I am NEDA, EDSS 0 exact two years since the diagnosis and treat myself with Copaxone and Vitamin D3 daily.
    If I am in Copaxone, which is a drug that I am fully aware of being of low efficiency and doesn't prevent progression to SPMS, I am NEDA for now, imagine so if I could have access to more powerful drugs, such as Cladribine, or Fingolimod or maybe even Ocrelizumab since my diagnosis?!
    And that's what I intend to have access to more powerful drugs because I don't want to wait for the bullet train of MS me again achieve with a devastating outbreak.

    I don't know if the people who follow this Blog are privy about this but has yet to redo the myelin old injuries! So the best we MSers and our doctors can do for us is to try to get access to more effective remedies from the onset of the disease because dead neuron is dead neuron, game over ...

    So Team G ignore naysayers comments and continue promoting real awareness about MS and its treatment ...

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    Replies
    1. Actually the 15 year extension study of Copaxone shows that of those on continuous therapy for 15 years, 57% had stable or improved EDSS score and 65% had not transitioned to SPMS:

      http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2850588/

      It also shows that if you begin treatment with a low EDSS score your chances of progression are slight.

      This extension study is just as valid as any of the extension studies cited by Team G for their "highly effective" marketed drugs but they disregard this evidence above.

      The thing Team G doesn't like about Copaxone is it takes 6 months for it to take effect and is a immunomodator, not a immunosuppressant. So they base a drugs effectiveness on how fast it halts relapse activity in a two year trial (or in a mouse lab), but this has no bearing on the longterm effects on the course of MS.

      So if you have highly active disease Copaxone is not a good choice, but it has helped many stabilize their disease (me included).

      I think Team G puts forth the notion that you have to have the most aggressive, toxic immunosuppressant to have any impact but the evidence does not support this notion and neurologists know this, but they are slandered by Team G.

      So it makes you question what is their underlying motives?

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    2. The underlying motive is to improve the treatment of MS, stop the development of disabiltiy and hopefully move to a cure and put ourselves out of a job (I quite fancy garden design as an alternative).
      Glad Copaxone seems to be working for you (it may not be the Copaxone but something related to you) but it doesn't for many which is why we need alternatives and the more the merrier.
      Ultimately, we're all on the same side here.

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  6. Does anything like this blog exit for other Long Term Conditions.

    Just keep it going, it really does keep us (the great unwashed) aware as to what is going on out there

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    1. It would be awesome if there were blogs like this one for other illnesses. I'm not aware of any but I've never searched for any other illnesses, so I don't know, but wish you well if you are looking for one.

      Bojana

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    2. There are blogs for other illnesses, they're there if you are unfortunate enough to be diagnosed with them.

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  7. Well, knock me down with a feather. Dre lives.

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  8. Dr Dre youre so boring, but you obviously amuse yourself, shame really, I guess your mother didn't give you enough attention as a child

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  9. We do have data in respect to some DMT's from trial extensions.

    Do we have have long term data in respect to sized patient populations when it comes to the newer generation DMT's? No. Will we have it anytime soon, no. I cant imagine a sized share of neurologists putting forth patient data nor in many nations can they.

    To not cover or report on these meds is certainly "Blog choice" but I for one appreciate the coverage.

    There will always be naysayers in any forms of dialog. Granted, many do not seem to have proper manners.

    As I said in another post as well in a differing thread. One never knows the extent of a persons MS. From ability of higher cognitive function to downright anger. Bi-Polar syndrome is common in MS for example. I've experienced this with friends. They attack and feel better (or not).

    I've learned in life not to attack if it can be avoided. I think first, then again before launching statement.

    I think the blog is fine and does an excellent job of reporting.

    I do think breaching new territory such as "MS Life Matters" is important. Very important. But Team G needs realize that in doing so attacks are going to happen.

    99% of the healthy population will not understand the complexity to make real change happen. What is required to create and put forth real doctrines towards changing the global management of MS more or less acceptance thereof.

    I do. We have probed it. Talk about high mountains!

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    1. Change happens slowly, it can often take at least one generation and often "belief systems" rather than science is the culprit.

      That doesn't mean change should happen slowly. Are "attacks" conducive to change processes? I work in a combative profession where "attacks" (not name calling) are a way of life and so I can't agree that "attacks" should be avoided.

      I have put "attacks" in quotations because of course there are different types of attacks with different consequences. "I think Team Barts smells, don't shower enough and don't care about anyone other than themselves" is a personal attack without merit (I'm in Australia so wouldn't have a clue how often Barts showers). But if I attack by saying a peak body organisation is not doing enough to share knowledge amongst stakeholders because their website is not user friendly then that 'attack' can lead to change. Someone on this blog recently drew comparison between the gay movement and people with MS in the context of disclosure of their illness. The gay movement essentially "attacked" the society by banding together and being aggressive - and eventually, it led to some changes.

      I'm pretty sure Barts do realise attacks are going to happen - apart from the trolls which are a fact of life on the internet, they've been dealing with Dr Dre since at least 2012 if not before.

      I didn't take this blog entry by Prof G as complaining about being attacked, I took it as a dare for the nay sayers to formulate their arguments in a more scientific way.

      That Dr Dre refuses to play by any 'social' or scientific rules is nothing new and I almost wondered if the blog entry was a secret unconscious call for his return lol.

      Bojana

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    2. I did not see the blog entry as an attack or response to others claims either per se.

      You are right in that attacks will happen thats the internet disconnection syndrome in large part.

      The LGBT community did not attack society but did protest in favor of their constitutional rights and now lefts apparently. The bathroom stuff is really fringe. Its just a topic I am versed on as my fiance' had at one time created the web presence for the oldest LGBT entity in the USA. Then he realized some things and exited stage left. But thats a long story!

      In software engineering attacks do result in better quality software more often than not. Again, information from my fiance' as he wrote video games for mainstream publishers for quite a time.

      If the topic is attacks or constructive criticism of research I am cool with that. When its, "Your team consistently fails and has a poor track record" when in science when a hypothesis is wrong and results are not as expected thats the nature of the beast.

      There are research papers in MS that go back and back and back in time some appear to have correctness to this day where as others are oops but back then were construed as correct.

      Towards disclosure I wrote a rather long post in respect to it in the poll results thread.

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  10. Re Dre Re Hey...

    Good cheap entertainment is always a blast but it can also be dangerous when used irresponsibly.

    Aka: Don(ald) TRUMP, aka: The TRUMPette's call.

    Aka: "For whom the Trump troll's toll... they troll for thee"

    One can listen to him berate, intrude, flip flop, insult and the crowds gather as "He's our man" whilst bar trollops discuss complex issues and vote based on anger, frustration and what is created is a reality show. Except, this reality show is real.

    A radio reporter yesterday said it well, "Here is a man who attacks, belittles, slanders, entertains, works satire, is representative in his life of few yet convinces that he is for the many. Reverses statements, will readily dive to insults, will turn people against one another and point fingers never taking responsibility in self. While this is all interesting to watch, this is probably not the type of person who we should entrust with a nuclear arsenals launch codes." <--- That is reality.

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