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On BBC website interesting…

Multiple sclerosis patient walks after taking HIV drugs

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This is the link to BBC South Today page on FB. Scroll down and there is a video on the same article.

https://www.facebook.com/BBCSouthEastToday/?fref=nf

It’s weird. I read this article this morning and came to the MS Society website to find out more, but there is no info that I can see. This website really should update the homepage with info when these sort of reports are in the news, as they should know a lot of MSers will come here for more information.

However there was an article on the homepage about a woman called Shana https://www.mssociety.org.uk/dance who is the same woman from the BBC article. No mention of HIV drugs or her walking again. She is pictured using a scooter and saying how she longs to dance again.

It’s all very strange.

Funny enough I just read the same thing on the homepage. There is a piece saying ‘we’ve mad an amazing breakthrough’ or suchlike and asks for donations but doesn’t give any details.

This is an old story dating back to 2012 and would like to know if the improvements have been maintained, before getting too carried away.

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Is it that old whammel? The article says she took the HIV drugs about a year ago

But I agree it’s important to know if her improvements were maintained. I found her on facebook and thought about asking her, but decided it would be too intrusive. Her profile picture shows her on her scooter so I think it’s fair to assume she’s not running around.

It’s so hard not to get carried away with false hope when these ’ amazing breakthrough’ stories hit the press.

For Shana’s side of the story, which she wrote for the MS Society :

https://www.mssociety.org.uk/ms-support/community-blog/2015/10/headlines-and-hiv-drugs

Best wishes

Stewart (admin)

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There was a comment on the Barts Blog today that indicated this was the case, although the whole entry has been deleted now, so possibly not.

Thankyou Stewart, that is very interesting and certainly helps put the story into perspective.

I think if I was her I would have done anything to source the drugs myself! Anyone seen Dallas Buyers Club?

Thanks for the link Stewart and nice to hear the true story rather than reading comments on facebook. It’s very sad that she wasn’t allowed to continue on the drugs and see if there was a long term benefit.

It does look really positive and like a longer trial might be of value, which it appears is happening. Shana ends her story with the link to email your MP and ask them to support the Off-patent Drugs Bill. Good advice.

Sue