Tuesday, 11 June 2013

Time Matters: ENS debate on early treatment and early switching

Early switching; how important is it? Time matters; time is brain. #MSBlog #MSResearch

"The following are my slides from yesterday's debate."

Monday, June 10, 2013, Plenary Hall 11:45 – 13:15

Novartis Satellite Symposium: Time matters: early and enduring treatment options in MS

11:45 – 12:10 MS pathology: inflammation and neurodegeneration Chair: Montalban (Barcelona, ES)
12:10 – 12:35 Treatment decisions debate: early vs. late switching. B. Kieseier, G. Giovannoni (Düsseldorf, DE; London, GB)
12:35 – 13:15 Panel discussion: when to switch treatment, T. Vollmer (Colorado, US)



"Several very challenging questions came up during the question time that need to be readdressed on this blog. For example, what is benign disease? I personally don't think you make a call on benign disease until the MSer concerned has had the disease for 25 or 30 years. Simply labelling someone as having MS is non-benign. Should we be denying people early active treatment because we may be treating a few MSers who will turn out to have benign disease 20 years later. More on this another time."

CoI: multiple

13 comments:

  1. Lets face it, most people with MS are not going to adhere to early treatment anyway. There is the notion that drug companies are only out to make money and neurilogists are in cohoots with them so why should they spend any time looking at data regarding drug efficacy or long term results. They would rather jump on the latest patient generated hysteria such as CCSVI.

    Once they start to progress and it is too late to do anything about their situation, blame is again assigned to the drug makers and neurologists. It is a viscious cycle.

    The only way you are going to halt MS is with a one time therapy or drug which will not rely on patient adherance:

    http://www.ncbi.nlm.nih.gov/m/pubmed/21515501/

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    1. CCSVI is most commonly pursued by patients with progressive disease, older age, greater disability and male sex, according to research presented at ACTRIMS. That does not sound like the MSer with benign disease considering whether or not to opt for early DMD treatment.

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    2. What research (please provide a link).

      Have you been diagnosed? What is your EDSS score? Did you attempt CCSVI and what was your EDSS level when you had this done? Are you on any DMD's now? If so, why?

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    3. Here's the article on what was presented at ACTRIMS. This was data from Dr. Marrie of the University of Winnipeg. It's at the end of the article: http://www.medscape.com/viewarticle/805565

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    4. I don't think we need to get into a debate about CCSVI because the science that has come out about it speaks for itself.

      As for the snippet about the distribution of people who seek out CCSVI, I think the assumption that this translates to the MS community as a whole is a stretch. CCSVI is the realm of housewives who want to feel important in that they scoured the internet and found an obscure paper by an obscure radiologists and started an uproar.

      I can imagine some people with progressive MS might try treatment for CCSVI because there is little hope for them. The thing that is disgusting are the people who promoted this "theory" (many who don't even have MS) to give hope to people based on shoddy science.

      I guess in this age and time, the internet can make you a celebrity:

      http://www.biomedcentral.com/content/pdf/1472-6939-14-6.pdf

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    5. My point was that you cannot blame CCSVI for lack of adherence to early treatment, since people who seek out CCSVI tend to be further along in the disease. It's a minor point.

      It's ironic to read "CCSVI is the realm of housewives" right under a slideshow that includes information on how often a person with MS will become unemployed. I don't think there is shame in being unemployed or underemployed or a homemaker as a result of MS.

      I am interested in the topic of benign MS. I had heard 15 years til you can be confident it's benign, but now Dr. Giovanni is saying 25-30 years? There's the idea that benign MS may not really MS at all, and there's the Olmsted county Mayo Clinic study that made it seem as if benign MS should go untreated so as to spare pwMS any adverse effects of DMDs.

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    6. sure you cannot blame ccsvi for lack of adhrence......why bnot sticking you head in the sand is a problem

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    7. Thank you for that BioMed Central article, Anon 7:38:00. I have a friend who teaches medical ethics at a university in the States. Will pass it on to them.

      As for "housewives", you don't know how right you are. I agree wholeheartedly that the actions of these unscrupulous scammers who promoted it and took advantage of the more desperate of us are disgusting! But that's why there's karma (or a Hell, for those who are so inclined).

      Maren, The Anon comments had nothing to with MSers who sought CCSVI or who are otherwise un/underemployed or housewives. The first set of comments were directed at MSers in general. CCSVI was just used as an example of a "patient generated hysteria". The second set is referring more to its promoters as being "in the realm of housewives who want to feel important in that they scoured the internet and found an obscure paper by an obscure radiologists and started an uproar" and "the assumption that this translates to the MS community as a whole is a stretch." As Anon pointed out, quite a number of the promoters don't have MS.

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  2. Most newly diagnosed MSers (in the UK)will not be under the care of a MS specialist neurologist so they won't be aware that early treatment could prevent damage and delay progression. Like many of us in our non-MS medical events, if the symptoms go away then we don't want to / forget to take our meds. Isn't that part of the cause of growing antibiotic resistance ?

    The sad fact is that it's a lottery to get to see a neurologist who is at least up to date and informed about MS treatments - I was lucky (eventually) many aren't.

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    1. Is there a dearth of MS Specialists in the UK?

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  3. Given what is known about MS it would be foolhardy to assume your disease is benign at dx. Gray matter damage occurs early in the disease even if you are not experiencing the effects. With what is available now and possibly in the future, people can have an impact on the course of their disease, but there has to be a commitment. Once you reach the secondary progressive stage the cat is out of the bag and you cannot turn back time.

    http://www.ncbi.nlm.nih.gov/m/pubmed/23124789/

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  4. I am a bit confused by term "benign". My dx was made at least 3yrs too late (after sx started), and had no option to start dmts. This was nearly 12yrs ago. EDSS 0 (sometimes 1 depending on when exam is done). Never been on dmt or corticosteroids. No new relapses (that we know of) since mild sensory one over 5yrs ago. Physically, no disabilities or limitations. However, I do have cognitive problems: working memory, attention span, apathy (not depressed), fatigue. No one notjces these, probably able to compensate due to cognitive reserve. Neuro says probably benign ms, but whats the definition? I have no relapses that i can discern for a very long time, no changes on mri for many yrs, no physical limitations.

    How do u determine that ms is benign if no physical relapses?

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