For MS Trust - Help with devising Fact Sheets

[Marina]

Another call for help from the MS Trust. If you can help my colleague, please email her at alice.hamilton @ mstrust.org.uk (remove spaces)

 

Thanks

 

Simon

Info Officer

MS Trust

 

The MS Trust is currently devising a series of factsheets on MS topics where there is no good basic introduction elsewhere in the literature. The intention is that they should help our information service when responding to specific enquiries. They are also designed to provide a 'peg' on which to hang more detailed research information as necessary. As you may know, the MS Trust provides information with a health focus.

 

A big gap that we regularly encounter is the lack of helpful information about all types of progressive MS. We'd like to write something to help plug that gap. However, it is difficult to know where to start, which is why I'm asking the experts - anyone who has progressive MS.

 

These are some of the things I'd like to cover:

- how progressive MS is different from relapsing/remitting MS

- why diagnosing primary progressive MS, or the change to secondary progressive MS, is difficult

- why research trials seem to ignore progressive MS

 

But is this what would be useful? What would you like to know about? How should I approach the topic?

 

Additionally, I'd like to collect a group of people who would be willing to act as a readers' panel for this factsheet. That means, reading the draft when it's been written, and feeding back comments, which will be used to shape the final version of the document.

 

I can promise that I will answer all responses to this email - though it may take a little while!

 

Many thanks in advance for all your help, and if you have any questions, please don't hesitate to ask.

 

Kind regards,

 

Alice Hamilton.