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Sophie Mirza's story reaches national media

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There were a few articles in the Times this week.

http://www.timesonline.co.uk/tol/life_and_style/health/article7008987.ece They told dying daughter she was lying, says ME mother Criona Wilson
http://www.timesonline.co.uk/tol/life_and_style/health/article7008824.ece ‘ME is a diagnosis only reached by excluding other possibilities’
http://www.timesonline.co.uk/tol/comment/letters/article7003399.ece Keep in mind ‘real’ diseases and pain of long-term illness
http://www.timesonline.co.uk/tol/life_and_style/health/features/article6998742.ece ‘Doctors, school, friends thought I was faking chronic fatigue syndrome’
http://www.timesonline.co.uk/tol/news/uk/health/article7001848.ece ME: a debilitating illness with no known cure

I think these may have been the first time The Times mentioned XMRV and CFS.
 
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I am very confused. Why now? Didn't Sophia die years ago? And local news media covered it then. So what has happened recently to make this story relevant? Has she heard back from a complaint recently?

It's old news. Terribly tragic, but not new.

Help me out folks?

Tina
 
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I guess it may have opened some minds to the suffering that Lynn Gilderdale and her family went through. Also, Criona Wilson was in court to hear the verdict in the Gilderdale case.
Perhaps the Times were waiting for this case, so that they could combine the stories?
 

Mithriel

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Sophia's story is relevant now because it shows that Lyn Gilderdale was not an isolated case, that there are lots of severely ill people out there.

There have been people all week pushing the myth that 80% get better. One of our problems is that no one feels the need to research a disease where the vast majority get better with the treatments available (CBT and GET).

ME destroys lives and kills people, directly or indirectly, often after years of hell. That truth never sinks into the past. People are enduring it today. Children, never mind adults, are facing removal to locked wards, today.

It will never be old news until the threat of sectioning is lifted and the severely ill are acknowledged and given the help they need, never mind treated.

Mithriel
 
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I contacted a few media outlets to tell them how wrong the 80% figures is. I pointed them toward the CDC page on recovery.


Recovery from CFS

CFS affects each individual differently. Some people with CFS remain homebound and others improve to the point that they can resume work and other activities, even though they continue to experience symptoms.
Recovery rates for CFS are unclear. Improvement rates varied from 8% to 63% in a 2005 review of published studies, with a median of 40% of patients improving during follow-up. However, full recovery from CFS may be rare, with an average of only 5% to 10% sustaining total remission.

I don't like how the CDC have behaved on CFS, but this summed up the situation well. This is the response I got back from the telegraph.




28 January 2010

Dear ...

I am writing in response to your email concerning the article on Kay Gilderdale.

Thank you for making us aware of the error as shown on the CDC website and I have made the editorial team aware of this for their future reference and consideration when reporting on the subject matter in the future.

We appreciate your comments and value your readership.

Yours sincerely,

Andy King
Editorial Information Assistant
 
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Yes, I see now that the article included the recent trial news with Sophia's story. I got to start reading things thoroughly before commenting on them. But there is just so much stuff and so little energy and time.

Tina