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

Can't find more recent tweets than this one
https://twitter.com/user/status/1429488194630914058

 

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.

 

https://twitter.com/user/status/1430084146106355721

 

Probably going to hit 15,000 today, now at 14,755.

I never ask F or F to sign petitions, but I did make an exception with this one.

 

15,013

 

https://twitter.com/user/status/1430461954766802947

 

Impressive. I assume it will lose speed but technically the longer the delay goes, the more signatures will go up.

 

How come I never get the option to make a comment when I sign?

 

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]

 

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.

 

17 000 now !

 

@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.

 

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.