#MEAction petition: MISLEADING PACE CLAIMS SHOULD BE RETRACTED

[Sasha]

Over 1,600 now, just since I wrote that post!

 

[Sasha]

Over 1,700! This is bloody amazing! It just keeps rocketing up!

 

[Sasha]

1,800! Can't keep up!

 

[Scarecrow]

1,800! Can't keep up!

Do you need a new denomination?

=

 

[snowathlete]

Sent it to my family and friends. Doing great. Such an important petition,

 

[Sasha]

Do you need a new denomination?

=

Brilliant idea because my clicking finger was getting tired!

 

[Snookum96]

Signed and shared.

 

[Sasha]

Using @Scarecrow's new system where

= 100

= 1,000

we now have

!

 

[Sasha]

Another 100!



Have you signed?

Have you sent it to your friends and rellies to sign?

Can you put it out on FB, Twitter, etc.?

Know other PWME who can help get it out there?

 

[Sasha]

This is just incredible - if you scroll down a bit and look in the right-hand sidebar, you can see that three or four people are signing every minute.

http://my.meaction.net/petitions/pace-trial-needs-review-now

We're on fire! And we've got another 100!

 

[Sasha]

I tell you what's fun - refreshing the petition page every few minutes and reading out the names of the new batch of people who just signed. It's like being in the same room as everybody. I feel as though we're all standing together in a long, happy queue at a desk with the petition on it, each of us picking up the pen and signing it in turn.

You can see names from all over the world - PWME everywhere are affected by PACE. It's not a UK issue (and I'm so sorry that my country is the source of this utter crap!).

 

[Sasha]

Can't see numbers on the petition now - think I might have clicked on there so many times that I've broken the website!

But last time I saw, it was



Sign! Sign now!

http://my.meaction.net/petitions/pace-trial-needs-review-now

 

[snowathlete]

2,530....correction, 2,531...

 

[Kyla]

In order to get this going even more and raise some awareness I think it would be useful to try to reach outside the ME community.

I'm trying out the strategy of posting in some facebook groups that are NOT specific to ME (other chronic illnesses, POTS etc). we'll see if this garners any interest, but its worth a try.

Here is what I posted, feel free to use any or all of this if you have other ideas of where to post and don't feel up to composing your own:

This trial has been called "the height of clinical trial amateurism"(Dr. Bruce Levin), "a mass of un-interpretability" (Jonathan Edwards), and one prominent researcher stated "I don’t understand how it got through any kind of peer review" (Dr. Ronald Davis).
more info here:
http://www.meaction.net/…/david-tuller-tears-apart-pace-tr…/

Yet it has informed public policy around the world, and contributed to misunderstanding and mistreatment of patients.

Even if you don't have ME or CFS, please sign this petition to support patients with invisible illnesses, and scientific integrity in medical research:
http://my.meaction.net/petitions/pace-trial-needs-review-now

(I linked to ME action summary instead of the Tuller piece as I thought it would be easier and quicker for those unfamiliar with the disease or with PACE)

 

[Kyla]

..also, its at 2700!

 

[Sasha]

In order to get this going even more and raise some awareness I think it would be useful to try to reach outside the ME community.

I'm trying out the strategy of posting in some facebook groups that are NOT specific to ME (other chronic illnesses, POTS etc). we'll see if this garners any interest, but its worth a try.

That's fantastic, Kyla, great going - a model of what to do.

 

[Valentijn]

2,980 ... almost there!

 

[Sasha]

3,000!!!



Look who's signing - people all over the world:

• Stephen
  less than a minute ago
• Nikolaj
  less than a minute ago
• Nicolette
  about a minute ago
• Heinz
  about a minute ago
• Teresa
  2 minutes ago
• Bridget
  2 minutes ago
• Paulina
  2 minutes ago
• Annie
  2 minutes ago
• Beverley
  3 minutes ago
• Leandro
  3 minutes ago

 

[Valentijn]

3,000!

 

[moosie]

I tell you what's fun - refreshing the petition page every few minutes and reading out the names of the new batch of people who just signed. It's like being in the same room as everybody. I feel as though we're all standing together in a long, happy queue at a desk with the petition on it, each of us picking up the pen and signing it in turn.

You can see names from all over the world - PWME everywhere are affected by PACE. It's not a UK issue (and I'm so sorry that my country is the source of this utter crap!).

I saw people I asked to sign pop up before my eyes minutes after I asked them