Wednesday, 7 June 2017

More cure rubbish in the media

In the past couple of days we have had more verge of a "cure" hysteria created by Cambridge, and this has been picked up by the media.

Please be aware this is an experimental treatment. 

It is poor reporting to be making these claims, when there are no clinical results. In fact it is a plea for investment if you read the report in the mirror

CoI: We are conflicted and have been involved with this, but this type of reporting is frankly irresponsible.

19 comments:

  1. First I've heard! Must be reading the wrong paper ;-)

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  2. Irresponsible is a society that keeps cures a secret in an effort to sell medications for huge profits, is not a civilized society , it is a mental institution ruled over by psychopaths .

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    1. Sadly this is not a cure, at least in the foreseeable future. And it has not been kept secret. It has been on this very blog.

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  3. Not the most flattering thumbnail of me here! Can I just point out that this image is taken from an MS Society video that has been used in the Mirror's article to describe what it's like to have MS and that I'm in no way linked to the research or the claims being made in the article! This is a real pet hate about thumbnails for links - it just picks up whatever is on the page!

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    1. Thanks for explanation Trishna, I'm sure this wasn't intended by the Blog team. You're off the hook!

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    2. Lol. Ah don't worry - I knew it wasn't intended! :))

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  4. I have just read the mirror report as it is the first time I have heard about this. where can I read a more level report about this?

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    1. Covered by Team G back in 2015 -
      http://multiple-sclerosis-research.blogspot.com/2015/05/myelin-repair.html

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  5. Non-myelo HSCT should be given from CIS in pretty much every case, in my opinion. Properly performed, with the correct chemo drugs, it's incredibly safe.

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    1. Over what time period of reliable data do you base this assertion?

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  6. MD why do you always have to rain on our parade? Don't you know it is tough to sell papers.:-)

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  7. This hype in this story is unlikely to be due to the investigators' but the journalist. What we have learnt over the years is that the headline matters when it comes to selling newspapers and getting eyeballs to see your content.

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    1. More likely, someone in the University PR section who knocked up the press release. They often don't even bear a passing resemblance to the research published.

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    2. I first saw it here. http://www.cambridge-news.co.uk/business/technology/meet-cambridge-scientist-verge-curing-13129687.

      It will be a press release from university somewhere, but we have become our own worst enemy.

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    3. lol.

      i do enjoy this.

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    4. Just having an internal too and frow about our press release, the thing that will catch the media eye is being removed, and no the C word was not mentioned

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  8. Yet one more time... We wont publish this stuff.


    Simply considering what patient populations define as "cure" varies.

    Some say, cause found and mitigated. Aka: No more new MS.

    Some say, "stopping my MS in its tracks."

    Some say, "Stopping my MS and reversing damage to my CNS"

    On and on...

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  9. I've said it before, the landscape of MS across the globe is a complete disaster and patients / families need understand exactly what that means as it impacts them CONSIDERABLY more than they are aware of.

    In media, Professor G. is spot on. Its all about page views which result in advertising prospects. What Professor G. did not say is those media entities, even those entities, even specific towards MS never give a red cent back to MS research or outreach. In fact, the actual advertisers (often Pharma which everyone hates apparently) give back far far far more than the entities which the MS patient community holds in high esteem.

    Even those that a patient might think are patient oriented. Dig deep. Find out real fast. Authors who are patients paid for writing, you all visit, company makes money selling Pharma ads, what comes back to you the patient in outreach or towards research is $0.

    Whens the last time you saw, "Health this or MS that or Med this" as media entities announce any significant gift to research or outreach?

    When did you see in news headlines this one or that one donates $50,000 to Barts London to aid in EBV research efforts?

    There are some entities out there looking to change this and as patients we should all rear up and support them.

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