#MEAction petition: Stop GET trials, stop MAGENTA ("PACE for children") ***UK deadline 12th March***

Sasha

Fine, thank you
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Last edited:

Sasha

Fine, thank you
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UK
From another thread:

JaimeS said:
And here we go, ladies and gents. Fasten your seatbelts.

http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/

And do read FAQ on main site (www.stopGET.org) before describing how it would have been done differently/better if only YOU had been there to advise, lol.

I love my community, and I also know my community! :D Done w/advice from many realms. Worked on by a small, dedicated, very ill team with advice from patients and non-patients alike, with backgrounds in gov't, law, statistics, PACE in specific, and research in general. Please be respectful of the effort that went into this, which was enormous.

POST IT EVERYWHERE. Really we gain the most exposure when everyone who decides to sign tweets or Facebooks their signature. If social media exhausts you, please consider emailing the link to others.

Thank you so much for your support -- it means the world.
 

Sasha

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We were on the thread that's going to be deleted, Jaime! :)

JaimeS said:
The first 100 signatures showed up in an hour, which is great! We now have nearly 200 in the global petition and it's only been an hour and a half.

However, we really, really have to push to get that 10,000 for the UK. Please tell everyone you know about this effort -- it is vital for UK citizens to start getting proper care.

For those of us who are not UK citizens, it is vital this support petition be huge. We all know that studies over there end up in our medical literature over here and in our governmental websites for recommendations, like the CDC's.

Please help us ensure that this is the death-knell of GET for ME patients, most especially children.

We in the UK need to blast this through the stratosphere because MAGENTA - the only GET trial that's happening now, or even planned, AFAIK - is a UK trial. Pressure from UK citizens and especially from the UK government is going to be what stops it. Let's tell the funding and ethics committees what we think about this trial!

Getting 10,000 signatures on the UK government petition automatically triggers a response from the UK government. So let's make them pay attention!

Let's get those 10k signatures in and make this the biggest ME/CFS petition the UK has ever seen.

Go, go, go! :rocket::rocket::rocket:
 

JaimeS

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Very excited to see the numbers shoot up on global -- over 300 signatures and it's barely been a handful of hours. Our community feels strongly on this!

Please keep pushing. It's important that we garner as many signatures as possible. Using exercise to treat ME is outrageous -- let's let everyone know about it.
 
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Have signed and will share on FB. Thanks to all who have worked to set it up and also the website.

I clicked through to look at the trial info on Bristol's site, and not impressed at several typos in the parent information document. Even basic editing should have caught them. And my stomach churned at the statement that GET isn't harmful, have they completely ignored the major surveys by MEA and others?!

Lastly I glanced at the questionnaire for older kids, and there's a whole section obviously looking for mental health issues, including one 'I am afraid of dogs.' :mad: WTF does that have to do with ME?, (I am not usually a swearing person but this one in particular made me very angry.) some of the other statements are equally bizarre.
 

MeSci

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All hands on deck!

http://www.meaction.net/2016/09/12/uk-and-global-petition-its-time-to-stop-get-trials-for-mecfs/

There are two petitions - a global #MEAction one (everyone can sign) and one especially for UK people, aimed at getting at least 10,000 signatures to get a government response (it's on the UK govt site, where that happens automatically).

UK government petition

Global petition

Sign and share - let's get it out there and break all records!
Signed them both! I was worried that I wouldn't be able to due to my inability to access the ME Action messages, but I did it.
 

A.B.

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@JaimeS Would you like a statement by someone who doesn't seem to be at risk of permanent harm by exertion but doesn't find it an effective treatment either?

Could be useful, because some could try to argue that GET helps a subgroup.