Petition: #MEAction: Publish the NICE ME/CFS Guideline Now

I can't see this petition posted on the S4ME twitter ac (?)

 

Have done already
Good suggestion though, they're a great org.

Any more ideas feel free to tag me and will send more emails!

 

I've put a note on the thread for the other petition asking people to consider signing this petition ( it's still getting signatures).

 

Now 7,225.

 

This has made me realise how much international collaboration we now have in the ME community, both at patient and at research level. We are so much further on than in 2007 in this regard and much stronger as a community. It is also showing up where any so called patient charity is an 'outlier' (thinking of Sussex and Kent for a starter).

 

Getting some high-level signatories now:



Priti Patel signed one minute ago.

 

@Gecko Miranda Hart?

 

Have started emailing family and friends with the link. Husband posted it on his Face Book.

 

https://twitter.com/user/status/1428641925998039040


eta:
maybe not imply it's only for those directly affected by ME, we need all the help we can get!

 

can someone on twitter let Sten Helmfrid know also

 

Checking with our social team - probs easier to contact on twitter but if they can't will email.

And yes I'll contact Sten.

 

Might it be worth 'promoting' this petition?
https://help.change.org/s/article/Promoted-Petitions-FAQs?language=en_US

 

Re alternative means of protesting

https://twitter.com/user/status/1428292510758100995


https://twitter.com/user/status/1428307544532033541

 

@Gecko re a possible local news item

https://twitter.com/user/status/1428412149269995520


@RuthT

 

Wish I had kept the pair of gardening boots I found out in my utility (side building on my house I use more as a 'shed') in the spring - they had had a brown house mouse (the ones that really stink, as opposed to a field mouse) living in them. It made me wretch when I pulled them out of the bag they had been in. Both the boots and the bag were full of mouse droppings and the mouse had eaten through all the lining to make a nest in one of the boots. That would have been a great 'symbol' to have sent to NICE!

Edit: I replaced the boots with new ones, unsurprisingly they still have the tag on them and haven't been taken out of their box since I bought them in the spring (I need to own a pair just in case I can use them one day, which is odd for someone who 'fears' exertion).

 

Over 10,250 this morning, at this rate it is going to end up near to the petition to have the Guidelines reviewed.

 

Yes, petition has been sent to the ones we have contact with.

And I did chat to Mark before we launched this petition, he's an excellent advocate and all round great guy and was happy to support both petitions.