United Kingdom: Petition: Set up a national harms reporting scheme for non-pharmacological treatments

[NelliePledge]

Signed.

agree @Lucibee the 2 petitions are complementary

 

[Andy]

245 signatures, https://petition.parliament.uk/petitions/601237

 

[Peter T]

245 signatures, https://petition.parliament.uk/petitions/601237

sad that this petition has not got going yet.

 

[Andy]

sad that this petition has not got going yet.

Without the same sort of organisation and engagement as there was for the recent German petition then they won't come close. One advantage that we have at the moment with this petition is that there is over 5 months left for it to run, so that support for it might still materialise.

 

[NelliePledge]

Yes from the experience I had trying to use social media to promote a local MillionsMissing event it takes a lot to get any traction and you have to get the word out through a range of people. I found it surprisingly difficult to achieve. ME social media seems to be rather a bubble.

 

[Andy]

 

[Andy]

Hopefully this will give the petition a boost as it's only managed to attract 259 signatures so far.

 

[Ash]

Hopefully this will give the petition a boost as it's only managed to attract 259 signatures so far.

Could we perhaps formally if necessary ask ALL the charities to prioritise this?

And then probably possibility of getting LC groups on FB (heard they are massive) and Twitter where there are loads of health professionals with LC who now don’t appreciate the poor offer.

And also Mind not sure what other charities….

I think we urgently needed an organised collective effort.

Promoting petitions is actually very hard work and we will discourage and wear ourselves out if we try to do this haphazardly and on our individual behalf’s without a plan.

I think most people don’t know that this sort of thing isn’t already monitored if it’s publicly funded and that they would expect it to be. They would expect evidence.

So this is one area where we don’t actually have to change minds, not to get support for the petition, we only have to raise awareness

Also if people expect monitoring for safety that undermines the MUS, FND, LC, FM and ME protocols along with many others. All of us could expect better and meanwhile escape harms. It would be a huge win for all of us.