Tuesday, 13 September 2016

Petitions: Changing the world one signature at a time.

So what makes a petition massive? And how can petitions for causes like ME be promoted, so that they too gather massive attention?

One petition that received rapid popular support was the one asking for Jeremy Clarkson to be re-instated as the producer of Top Gear.  It didn't actually succeed, but apparently in just ten days it collected over a million signatures.  I guess being a huge celebrity, and a controversial one at that, can really help.

Other viral petitions have children or pets, tugging at our heart strings. They often challenge some nonsensical bureaucratic decision that offends our sense of justice. So we sign, because we all want the world to be made right.

Yet a petition, that highlights only one individual case, doesn't necessarily challenge the root cause of the issue.  The specific case may get resolved but the problem issue might remain.

It's a tricky call for petition writers. Focusing on one individual case, might elicit greater public sympathy, but focusing on the root problem - the one that changes the system for the better - doesn't always grab as much attention.

So what does all this mean for petitions about ME?

If we want petitions to move beyond ME circles then maybe the lessons from the examples above could be used to help us. Here's what I suggest:

  • If you share a petition online, add your own short comment because people respond better to individual stories.
  • If you happen to know any celebrities (or even just some-one with a huge media following) then encourage them to share your post too.
  • When you share a petition consider making your comment public, so that even people you don't know can hear your story.
  • Share that important petition more than once, because most of us don't sign the first time we see a petition.
  • Think about places beyond ME circles, where people might sign if you asked them.
Escalate the Impact!

It might seem that each petition we sign makes little impact on its own, but I think globally our message is starting to get louder.  ME advocates world over are adding their voices to the ME cause.

Soon I suspect we will create the perfect storm.  A storm that will change the whole paradigm of how ME is regarded.

The #MEAction petition of last year calling for the Lancet to review and retract the PACE Trial collected over 12,000 signatures.  It has been referenced in many subsequent letters and articles. The petition was even mentioned in the recent tribunal report that ordered Queen Mary University of London to release the PACE Trial data.

So could we be on the cusp of huge change?

Every action we take now builds on the achievements of earlier advocates, and  adds greater strength to the actions of future advocates.  ME patients can't march the streets, but we can sign petitions. We can share campaigns. We can each make a noise, each in our own way.

The #MillionsMissing demonstrations on 27th September have the potential to have a huge impact. Rows of empty shoes representing lives lost to ME will create a very dramatic image.

Right now there is massive potential for creating momentum to change how people with ME are treated, and every one of us who simply signs a petition is helping.

Your voice matters.
Your signature on a petition matters.

We matter.  

Let's let the world know it!

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Petitions worth signing:

The Opposing MEGA Petition:
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Two #StopGET petitions:
Both petitions are linked on this #MEAction page.  At the moment Graded Exercise Therapy is being used on children in the MAGENTA trial.  This must stop:

PETITIONS: SUSPEND ALL TRIALS OF GRADED EXERCISE THERAPY IN CHILDREN AND ADULTS WITH ME/CFS

Ongoing Dutch Petition:
ME is not MUPS: Change Dutch Health Council Committee and adhere to the advisory report assignment (MUPS = Medically Unexplained Physical Symptoms)

Please also consider endorsing Alem Mathees for a WEGO Health Award for his substantial work on questioning the PACE trial, and for successfully challenging the PACE authors to release their data.  You can give him a vote for an award at this link:
https://awards.wegohealth.com/nominees/12435 

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