Where do you get your Info from?

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I was recently listening to an MSer, about where they go to get their info about MS. 


Many people use the Internet for info….be careful


Do you go to the info sites provided by Pharma companies? 
Are they Really the “Devil”?
Do they have an Image problem?


Do you get the best info from your neuro or MS Nurse-the Angel?





This Weekend April 26-27, there is MS life Meeting in Manchester. Maybe you can get the infor from the horses mouth. 


There are going to be some Neuros present….


Dr. Coles for Cambridge is there. Will he present their data on the long term follow-up of early MSers on Alemtuzumab?


Do they convert to SPMS? 
Maybe ask the question and you may get an answer that you want to know? 




Köpke S, Solari A, Khan F, Heesen C, Giordano A.Information provision for people with multiple sclerosis.Cochrane Database Syst Rev. 2014 Apr 21;4:CD008757. [Epub ahead of print]

BACKGROUND:People with multiple sclerosis (MS) are confronted with a number of important uncertainties concerning many aspects of the disease. Among others, these include diagnosis, prognosis, disease course, disease-modifying therapies, symptomatic therapies and non-pharmacological interventions. It has been shown that people with MS demand adequate information to be able to actively participate in medical decision making and to self-manage their disease. On the other hand, it has been found that patients’ disease-related knowledge is poor. Therefore, guidelines have recommended clear and concise high-quality information at all stages of the disease. Several studies have outlined communication and information deficits in the care of people with MS and, accordingly, a number of information and decision support programmes have been published.
OBJECTIVES: To evaluate the effectiveness of information provision interventions for people with MS that aim to promote informed choice and improve patient-relevant outcomes.
SELECTION CRITERIA: Randomised controlled trials, cluster randomised controlled trials and quasi-randomised trials comparing information provision for people with MS or suspected MS (intervention groups) with usual care or other types of information provision (control groups) were eligible.
MAIN RESULTS: Ten randomised controlled trials involving a total of 1314 participants met the inclusion criteria and were analysed. The interventions addressed a variety of topics using different approaches for information provision in different settings. Topics included disease-modifying therapy, relapse management, self-care strategies, fatigue management, family planning and general health promotion. The interventions contained decision aids, educational programmes, self-care interventions and personal interviews with physicians. All interventions were complex interventions using more than one active component, but the number and extent of the intervention components differed markedly between studies. The studies had a variable risk of bias. We did not perform meta-analyses due to marked clinical heterogeneity. All four studies assessing MS-related knowledge (524 participants; moderate-quality evidence) detected significant differences between groups as a result of the interventions indicating that information provision may successfully increase participants’ knowledge. There were mixed results from four studies reporting effects on decision making (836 participants; low-quality evidence) and from five studies assessing quality of life (605 participants; low-quality evidence). There were no adverse events in the six studies reporting on adverse events.
AUTHORS’ CONCLUSIONS: Information provision for people with MS seems to increase disease-related knowledge, with less clear results on decision making and quality of life. There seem to be no negative side effects from informing patients about their disease. Interpretation of study results remains challenging due to the marked heterogeneity of the interventions and outcome measures.


The more information you have, the more you know…NSS

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MouseDoctor

18 comments

  • When my son was diagnosed with MS 5 years ago I mentioned campath to his neurologist. He said a lot of people had died after having it. Maybe he meant after treatment with it for leukaemia, but he didn't qualify his statement. Maybe that's why we need to get info from a number of different sources, to enable MSers to understand their disease free from the bias or beliefs of one or two individuals or organisations.

  • For MS information, I go here:

    http://www.msdiscovery.org/

    http://www.msnewschannel.com/

    I come to your site mainly for entertainment purposes. I like reading the opposition from some of the regulars (Dre, etc.) as it provides for fun reading.

    The other sites I provided links to do not really have active input from researchers as your site does, which I think is unique on the internet. You may be well served to keep posting opposing positions from readers as it may be the only thing about your site that is differnt.

    Other than that, I think the information you provide and your commentary is quite biased.

    • MS News Channel has come up in the comments here a few times (maybe all from the same anonymous). I went over a few times last month, when the subtitle read something weird like "News for Neuro's and Their Wives."

      While some good nuggets show up there, it seems barely, if at all, unmoderated. So, rumors and miracle cures were mixed with good science with no analysis.

      For example, I just visited again today. And there are a couple stories on the front page from local-level news channels about what a shame it is that Lemtrada wasn't approved. You know, I think it's a shame too.

      That said, I write advertising and marketing copy all day long for a living, and those stories smell a lot like Genzyme's PR machine at work to me. You slip a news release and the name of a local guy who's willing to go on TV to the news stations. They eat that stuff up.

      MSNews channel is a slightly better source of ms news, than, say, setting up a Google alert. But it's not nearly on a par with MS Discovery or this site.

    • Agreed, Dre elevates this blog to loftier heights. His contribution and questioning of pro-medicine stance of Prof G and co. is verrrrrrrrrrrrry important, I think. He seems to have cut back on commenting because he always gets attacked by everyone.

    • "I come to your site mainly for entertainment purposes. I like reading the opposition from some of the regulars (Dre, etc.) as it provides for fun reading." Maybe I'm missing something…..what's so fun about MS? The lack of effective treatments? The disability that occurs from neurodegeneration? The lives that are affected by the disease? The decades of research that have still to yield the cause and cure? You're right, this is fun stuff.

    • Yes, just because you have MS doesn't mean you can't find the way Dre presents his arguments as entertaining.

      Steve S, maybe you should stick to reading medical journals and use your reasoning to figure out what you should do with your ms. I can only imagine why you haven't found a treatment that has any impact on your disease.

    • Bullied? Oh come on, now. Dr. Dre comes here because he (or she) benefits from it. Dr. Dre comments because he (or she) benefits from it. That's how humans work. Nobody does stuff they don't have unless there are rewards–intrinsic or extrinsic.

      Dr. Dre, like most of us, knows the culture and personalities of this blog. He (or she) knows that it's easy to push MD's buttons, and he (or she) digs the response from him and the readers. Why else would he (or she) come around?

    • Anon 2:58pm

      Dre does sometimes post very humane comments where he (she) asks for better access and political protection for MSers. MouseDoc and Dre have a pretty hilarious back and forth, with Dre usually coming on top. They do seem to deep down respect/ like each other.

  • All my information has come from online research. This includes finding and referring myself to my local MS Nurse following a whirlwind diagnosis, finding out that I needed to inform the DVLA and most beneficial of all having the information to challenge and overturn my neuro's refusal to put me on DMD's.

    Yes you need to sort the wheat from the chaff but overall Google has proved to be an excellent ally and a critical one given the lack of information I got at hospital.

  • Sorry, Dr Coles could not make it at MS lie and called off sick….Hope this post didn't scare him off.

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