Just a few off 11,000 now. 15,000 to match the 2017 petition doesn’t seem unrealistic
Eta it’s tipped over 11k
Eta it’s tipped over 11k
Last edited:
-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Petition: #MEAction: Publish the NICE ME/CFS Guideline Now
- Thread starter Andy
- Start date
About to tip over 12k only 70 more, looks like good support from international ME community
Could go past the 2017 one if it keeps going like this.
Could go past the 2017 one if it keeps going like this.
Simbindi
Senior Member (Voting Rights)
It's very good considering so many PWME don't normally engage with community advocacy for various reasons, not least they are struggling to just manage their day to day lives. I was in that situation for the first 20 years of my ME, then spent the next years sorting out my benefits and the autism diagnosis so really only became involved when I discovered this forum, without which I'd probably be in ignorance of what has and is happening with NICE.
Hopefully another positive to come out of this 'pause' will be the increased exposure of how badly our community has been treated and thus more people getting actively involved in ME advocacy, if only from their homes and beds.
I used this petition to email family members to explain the situation and some did sign the petition in support of me. That also provided me an opportunity to explain more to them about ME and the research being done/still needed.
Hopefully another positive to come out of this 'pause' will be the increased exposure of how badly our community has been treated and thus more people getting actively involved in ME advocacy, if only from their homes and beds.
I used this petition to email family members to explain the situation and some did sign the petition in support of me. That also provided me an opportunity to explain more to them about ME and the research being done/still needed.
Last edited:
Yes so far I’ve had three people confirm they have signed. Others may have done too without letting me know…….perhaps
I am posting daily updates on Facebook because you can’t rely on your posts actually surfacing on people’s feeds due to that being influenced by FB not a simple case of follow someone and you see all their posts
I am posting daily updates on Facebook because you can’t rely on your posts actually surfacing on people’s feeds due to that being influenced by FB not a simple case of follow someone and you see all their posts
Updated now gone over 13,000
Last edited:
Good
wondering how many more by the end of the week, 17500, maybe even 20,000 is achievable
wondering how many more by the end of the week, 17500, maybe even 20,000 is achievable
Peter T
Senior Member (Voting Rights)
I think the commenting facility is separate to the signing process. I signed the petition a few days ago, but now when I go back to the petition page (https://www.change.org/p/the-nation...ellence-publish-the-nice-me-cfs-guideline-now) if I scroll down the left hand column after the Updates box at the top of the comments there is a space where I can add my comment.
[added - I have just successfully added a comment as per the above]
Last edited:
Well it’s definitely going to be over 16k before 3pm as only 40 more needed
will it reach 17k? I think it is possible if there’s another rush hour in the morning
will it reach 17k? I think it is possible if there’s another rush hour in the morning
Peter T
Senior Member (Voting Rights)
I shared the petition on Facebook the day it came out and got little response. However I shared it again and got one comment and one share, and then interestingly I shared it for a third time yesterday and instead of annoying people I got a better response and seem to have encouraged more people to sign than the two previous postings.
Yes @Peter Trewhitt FB is so rubbish for finding posts that if someone sees a post and thinks I’ll have a look at that later they probably will struggle, even if they do remember. And if they’re someone who likes lots of stuff your post might not even pop up on their list. The only way you can get through is if you do quite a few posts and do it regularly, that’s why @Tom Kindlon is so effective on FB. Also the messaging that 15,000 have already signed supposedly does influence others to sign.
Binkie4
Senior Member (Voting Rights)
@Andy @Gecko
Mr B has just had a report from a friend who signed the petition. After he signed it, there was a link directing him to another petition about ME.
Link follows- do NOT SIGN-it leads to a petition about ME recommending osteopathy and the Perrin technique. It has about 1300 signatures.
https://www.change.org/p/national-i...ign&utm_term=1c0b28d902334b699f171a1e4599f6cb
What is going on? Could someone get this taken down?
edit: on reading the comments, this petition seems to have been around since Feb/March. Does the Change.Org process link petitions about the same topic? Not helpful.
Mr B has just had a report from a friend who signed the petition. After he signed it, there was a link directing him to another petition about ME.
Link follows- do NOT SIGN-it leads to a petition about ME recommending osteopathy and the Perrin technique. It has about 1300 signatures.
https://www.change.org/p/national-i...ign&utm_term=1c0b28d902334b699f171a1e4599f6cb
What is going on? Could someone get this taken down?
edit: on reading the comments, this petition seems to have been around since Feb/March. Does the Change.Org process link petitions about the same topic? Not helpful.
Last edited:
Wonko
Senior Member (Voting Rights)
Actually, at least in my case, it says there are 10 further petitions I may be interested in - this is a lie, on both fronts.
There were more than 10, in fact I don't know how many but it didn't stop at 10, and I had no interest in any of them.
It makes it seem as if it is compulsory to at least view these to get a signature accepted, by use of a 1-2-3 stage indicator, which never reaches 3, for the process of getting a signature recognised/accepted.
I do not like change.org, or petition sites in general, because of this sort of misleading deceptive rubbish.
I did however sign this one.
There were more than 10, in fact I don't know how many but it didn't stop at 10, and I had no interest in any of them.
It makes it seem as if it is compulsory to at least view these to get a signature accepted, by use of a 1-2-3 stage indicator, which never reaches 3, for the process of getting a signature recognised/accepted.
I do not like change.org, or petition sites in general, because of this sort of misleading deceptive rubbish.
I did however sign this one.