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

[rvallee]

A comment from an Australian signee


@rvallee

 

[Sly Saint]

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

 

[Gecko]

it might be worth contacting this organisation
https://twitter.com/chronicinclude

they tweeted the other petition

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

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

 

[Sly Saint]

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).

 

[Dx Revision Watch]

Now 7,225.

 

[Simbindi]

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).

 

[TiredSam]

Getting some high-level signatories now:



Priti Patel signed one minute ago.

 

[Sly Saint]

@Gecko Miranda Hart?

 

[NelliePledge]

@Gecko Miranda Hart?

Good idea

 

[NelliePledge]

I decided to take a deep breath and post it to my small group of FB friends and WhatsApp group - don’t do that very often at all. I did get a few for the original MEAssociation petition in 2017 to get the guidelines reviewed so hoping some will do this one too.

ps it’s not far off 8500 now and ticking over quite well

 

[MEMarge]

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

 

[Sly Saint]

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

 

[Sly Saint]

can someone on twitter let Sten Helmfrid know also

 

[Gecko]

@Gecko Miranda Hart?

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

And yes I'll contact Sten.

 

[Sly Saint]

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

 

[Sly Saint]

Re alternative means of protesting

 

[Sly Saint]

@Gecko re a possible local news item



@RuthT

 

[Simbindi]

Re alternative means of protesting

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).

 

[Daisy]

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

 

[Gecko]

Mark Harper who I contacted and told about S4ME (the other petition from the Cambridge support group) has retweeted Ben Marshes link to this petition.
He's on twitter:
https://twitter.com/markcapltd

the Cambridge ME support group
https://twitter.com/CBMEgroup

@Gecko I'm guessing that somewhere you have a list of email addresses for the various support groups?

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.