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Graeme Kidd's avatar

Another vote for keeping the Newsletters the same.

The alternative for pwMS is generalist non-technical advice which allows clinicians to be gatekeepers. Yes, the newsletters are technical and demand investment in the subject matter to understand them, but are the most accessible route for non-clinicians to grasp what might be going on in their bodies. Also, your newsletters provide a springboard to more technical papers if further research is sought.

As someone with Smouldering PPMS (4th straight MRI showing NEIDA in 2 years), I fully intend to challenge my MS Consultant into finding a solution/ treatment plan to my advancing condition and/or get me onto a trial (BTKi looks promising...). I can honestly say that I wouldn't know or understand enough to challenge my Consultant if your Newsletters didn't exist.

Keep it up Gavin, you're making a difference!

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tiny's avatar

I've said it before, but I think your information level is at the more "medical" end of lay/accessible, but I think that's right where it belongs. There are many other sources that are less technical if people want them, and you are very good about responding to questions.

As for the policy document, I agree "Flipping the Pyramid Matters" is not perfect - it requires extra definitions/context/prior knowledge to be understood! Perhaps something like "start strong" etc.

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