Friday, 28 April 2017

#ThinkSpeak & #ClinicSpeak: blog links

Can you please let us know which web links you want us to support? #ThinkSpeak #ClinicSpeak



During the AAN a neurologist from the US came up to me and thanked me for our blog and said that it had become his go to resource for information and that he used our landing page for all other MS resources. He specifically asked me to put back our PML infographic and other web links. Do others feel this way? If yes, which other web resources should we support and are there any other MS-related resources out there that you would recommend we link to? Please note we don't want the list to be overly long and nor do we want to support sites that are commercial. 




9 comments:

  1. The PML info graphic is something that you post and support and update.

    Most of the other links are charities, journals (aren't you picking the papers) and the company sponsored sites. Makes you wonder do they pay you for this link, so how do you select sites to link to?

    You could make buttons in the tool bars perhaps but nothing prominent.

    The MS Discovery Forum is a dead site it stopped updates in 2016

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  2. Too many posts in a day already. Too long.

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  3. The most important feature that has to be fixed is the search functionality.

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    1. I agree it is pretty useless but that is the one available. Do you know of a third party search engine to be inserted into blogger

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  4. Why have links to other blogs at all, if you're going to link to other blogs, please let the links be to reputable researchers or medicos that have something interesting to say! This is the reason I follow your blog, because it's reputable and interests me as a MSer.

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  5. No links that have adverts and no pharma companies.

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  6. I appreciate MS Unites being added to the list. Whilst our work gets quite a bit in the way of global page views most patients are unaware of our long term goals nor the fact we are a patient driven resource with clinical oversight.

    We are very young to the MS webs scene, very motivated and as an independent entity not bound by predefined boxes we need exist within. Not borders, not ideas, not sponsors nor a red cent from patients or pharma.

    It *IS* our goal to get information into patients hands online and offline, facilitate and support the patient, research and clinical community in very real, achievable ways on a global scale and bring unity to a extremely fragmented MS landscape.

    The ACP Discovery has been shut down, lack of funding. We did reach out to them but have not as of yet heard back. It is an important asset in the MS Community in our opinion and want see it reborn.

    Amazingly, given our position on the web the support has been wonderful for our continued work as it is our goal to "Put a dent in the MS universe"

    I am not sure we are ready for "Primetime" but we are making progress!

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  7. Shut down because lack of funding.....

    Yes because of lack of pharmaceutical company funding. With this the model the chance of substaining activity is slim, because priorities change. However if you are funding loads of people that is loads of cost.

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  8. 99% of patients we've talked to do not understand the relationship between Pharma, associations and them as individuals and patients.

    We are not Pro or Anti Pharma per se. There are aspects good and aspects bad.

    The MS community is a complex landscape. As researchers/clinicians you might be unaware of the patient principles landscape but are aware of the frontline associations landscape lets say.

    Patient landscape, online... quite different.

    Many entities, many players, and often quite predatory in nature.

    I've said it many times... Yep, Pharma's no angels, its business. But look at a Genzyme .vs. a Facebook. Facebook is a far richer company and makes it money be literally selling people per se. Walmart is far richer and nearly everything in the store they consign, markup significantly, resell.

    People tend need have targets to direct anger at.

    With webs, often patients online have no idea how much work it actually is. "This one or that one is in Pharma's pocket!", hear it all the time.

    "Are you guys at MS Unites paid by Pharma or companies?"

    Truth - We've never made a red cent. The website has well in excess of 3000 hours of work into it. So how many pwMS out there more or less not want put 3000 hours of their time into helping us? Or 1000? Or 500?

    This is why there are LOTS of unrealized plans out there by many entities in the patient community. Its real work and if one is expecting to be paid then think again as thats doubly as hard as the work itself.

    Its not impossible to create a machine mutually beneficial to all parties, research, clinical, patients, business and frontline MS entites and thats exactly what we are doing.

    My fiance' has funded all of MS Unites, over $8000 out of pocket and over 1000 hours easy of his time free. He's a software engineer, so, do the math, $42 per hour at 1000+ hours.

    What you said MD is very true. Money does make the world go around and money talks. We do have a revenue model and plans. Those plans are to give back in very big ways to the MS community essentially the "Robin Hood" model of take from the rich and give to the poor. That requires being well connected.

    My fiance' is well connected and we spend the time making more connections.

    But in order to make progress towards goals the work need be done, that simple and if anyone thinks its easy then by all means, we welcome all help but we wont do that on a "when I can" basis.

    Its real work, if someone wants volunteer to put in 10 hours a week, 2 hours a day then thats whats expected to happen. Anything other than that things go off track. "Well we are waiting on 'Mr/Miss XXX' ." So now other work gets put on delay due to that. When volunteer's are told, "2 hours a day" then they are "Well I should get paid then, gonna treat it like a job!"

    Ummm, didn't ya just yell about people getting paid for their time?

    They often want volunteer on their terms and for some things that works, for others, not so much. Often when they see the workload, "Sorry... I cant do this."

    Its not like Run or Walk MS volunteer where "I see the day and the end of this work." At MS Unites, the work does not end.

    How many able patients volunteer for their local patient associations say 20 hours a week like a part time job? They'll gladly accept the help and make real things happen for patients.

    We realized going into this many things. We did not realize how hostile the landscape is. But thats ok. Nobody said making a real difference was going to be easy.

    You all run this blog, are your wallets filled for doing so? Uh uh.

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