SIGN NOW! Jeremy Corbyn's e-card needs 20 signatures to reach 1,000! INTERNATIONAL SIGNATURES WELCOME!

[Sasha]

Great idea by @Jo Best to express our gratitude to Jeremy Corbyn (leader of the Labour Party and the parliamentary opposition, for non-UK PWME!), who has provisionally accepted Invest in ME's invitation to give the opening speech at their 2018 conference.

The more we show our gratitude, perhaps the more likely he is to keep this high on his list of priorities.

Here's the card that Jo kindly created - you don't need to register to sign it. Quick and easy!

Please sign and share widely - deadline for signatures is 30 November.

HIS TALK WOULD BE A MASSIVE DEAL! Please support this.

 

[Awol]

Thanks @Sasha and also @Andy for inspiring the idea and @NelliePledge for spotting the update by IiME Research on social media
https://www.s4me.info/index.php?thr...fill-in-agenda-j-corbyn-to-be-confirmed.1108/

 

[Sasha]

167 signatures already, folks - keep 'em coming.

@Jo Best, were you thinking of contacting IiME to ask them to share the link to the card on their social media?

@Andy, how about sharing it on S4ME's?

@Tom Kindlon, fancy sharing this?

While I just sit here, obv.

 

[Awol]

@Jo Best, were you thinking of contacting IiME to ask them to share the link to the card on their social media?

I'd emailed IiME the link for their info, posted it in their Facebook group and I see a few people have tagged them and JC with the link on Twitter with the usual hastags so hopefully all covered for now.

 

[Andy]

@Andy, how about sharing it on S4ME's?

https://www.facebook.com/sci4me/posts/489054568147624

 

[Sasha]

302 signatures now. Wouldn't it be great to get 1,000!

Hard to back out when you know so many people want you to attend...

We should be pushing this as hard as any petition, IMO. This is a major opportunity for advocacy. Hard to overstate it.

 

[Sasha]

587 signatures!

Keep the signatures coming, folks...

Share, share, share...

 

[Sasha]

660... heading for that 1,000...

 

[Allele]

Done! Thank yous all around!

 

[Esther12]

Thanks Jo, and Sasha. Good to do what we can to make the most of these sorts of thing.

 

[Sasha]

689 signatures this morning, and only until 30 Nov to go. I'd love to see it go over that 1,000 mark, because it would be great for IiME to be able to write to Corbyn's office and say that over 1,000 patients were thrilled that he was going to speak and that they really hoped he could fulfil the engagement.

I hope other UK charities would push this, if anyone is able to contact them...

 

[MeSci]

It's a shame that several signatures are duplicates.

 

[Sasha]

It's a shame that several signatures are duplicates.

I'm impressed that you've read them all!

@Jo Best, as the card-owner, can you clean out those duplicates before the card is sent (or have Groupcard remove them)?

 

[Awol]

It's a shame that several signatures are duplicates.

@Jo Best, as the card-owner, can you clean out those duplicates before the card is sent (or have Groupcard remove them)?

There's a glitch on the group card site whereby duplications of some signatures are generated automatically and it's easy to check by means of the list of names on the home page of the card. If I can't edit out the duplicates or if it goes crazy I'll contact the company for help to sort it. I appreciate the heads up.

 

[MeSci]

I'm impressed that you've read them all!

I haven't read them all, just come across them when looking through quickly.

 

[Andy]

Just spotted this on the MEA Facebook page......

 

[Sasha]

That's disappointing, and rather confusing, because Charles did a 16-page report on last year's IiME conference, that he made available on the MEA website and that was included in the print magazine:

http://www.meassociation.org.uk/201...ce-report-dr-charles-shepherd-22-august-2017/

This was an interesting, encouraging and informative conference that covered a number of important new approaches to the way in which the investigation of the underlying disease process in ME/CFS, as well as the development of diagnostic biomarkers, is moving forward. Hopefully, these developments will also lead to much needed treatments that are aimed at causation rather than symptoms control – as is currently the case. Thanks to everyone involved in both the organization of this event and the people who gave the presentations.

So if he's willing to support the conference by attending it and praising it after the fact, I can't understand his reluctance to help get Jeremy Corbyn there.

I think Charles and the MEA do great work, and I hope he'll rethink his approach to this.

 

[Trish]

We should not assume it was Charles Shepherd who made that decision. He is the medical advisor, he doesn't run the MEA facebook page.

 

[Sasha]

We should not assume it was Charles Shepherd who made that decision. He is the medical advisor, he doesn't run the MEA facebook page.

That's a good point - my apologies to Charles.

 

[Allele]

I'm also confused by that response, as I don't see what it has to do at all with "other charities"? It is more about the entire patient population potentially benefitting from the attention of a high-profile government figure. That comment makes no sense to me at all.