#MillionsMissing today, 12 May - post news, tweets, etc. here

Arnie Pye said:
http://www.bbc.co.uk/news/newsbeat-44094429
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A statement to Newsbeat from some of the country's leading ME researchers and clinicians says: "These therapies help many people with CFS/ME by reducing symptoms, increasing what they can do, and improving their quality of life."

It goes on to say that using GET "is based on good evidence from multiple studies and randomised controlled trials showing that these treatments are safe and useful for some patients.

"Right now there are no alternatives for patients, so it is vital that they are not deterred from accessing therapies that can help them."

The Department of Health also admits ME is "poorly understood" and says "over the past six years we have invested £3.35 million in research to improve understanding of the condition and to look at new approaches to treatment".
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We need to be ready for this next time, when interviewed spokespeople should probably say the "leading" researchers continue to cling to their debunked and poorly conducted studies that claim therapies that make patients worse are good for them and in the UK "experts" commit people against their will, force harmful treatment on them, make them sicker before releasing them and calling it a success.
 
I went with my son today to the Millions Missing event in Santa Monica (Los Angeles).

It was very moving to meet so many people who are living with this illness and their loved ones and others who care.

About a hundred people were there. Jen Brea spoke via iPad/internet, being too unwell to attend in person. I met her husband Omar, who did speak.

I spoke when it was time for people to share our experiences. It meant a lot.

My boy took a selfie of us (after I left my camera in the car, d'oh!). He'd just broken his iPhone screen so the image has a weird ghostly glow to it. Somehow seems right.

Bill

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Alvin said:
We need to be ready for this next time, when interviewed spokespeople should probably say the "leading" researchers continue to cling to their debunked and poorly conducted studies that claim therapies that make patients worse are good for them and in the UK "experts" commit people against their will, force harmful treatment on them, make them sicker before releasing them and calling it a success.
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Yeah, they specifically chose to end the article on that note, too. "Here is the actual story... now let's close with a word from our sponsors."
 
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