Carol Monaghan has applied for a debate in UK House of Commons main chamber

I have to say I'm extremely disappointed with #MEAction and the MEA, because I took what they said in good faith (as did @Sasha very reasonably), and posted this very encouraging 'news' to a FB group where hope, as always, can be in very short supply for PwME. I now find I have been the purveyor of fake news, and don't feel good about it! Especially given the rapturous enthusiasm it received. Not happy.

 

Dear Barry and friends,

This was posted on social media, via Facebook and Twitter, by both charities as it was communicated at the time, in GOOD FAITH! NO ill faith was intended as you can understand, on the contrary! Business might be taking longer than usual for parliamentary things at present. That's MY understanding and my take.

Best,

Espe

 

just to add: If you have any questions or suggestions, do email me! -> espe@meaction.net

I AM HAPPY to chat and exchange private emails with you all!

Night!

Espe

 

I don't think it's fair to blame the charities. As per the message from Carol quoted above, she understands that it will get a slot but doesn't want to count her chickens before they've hatched. Note that she's also said she doesn't see the need to retract the statements.

 

Yes, I do very much appreciate the comments will have been made in good faith, not suggesting otherwise at all. I just feel that these charities must have the connections needed to double check the facts before reporting as facts. Because those statements very much were counting chickens before hatched. But anyway, water under the bridge now, and I'll be a little more cautious in future.

 

I think that, as a patient group, our history makes us unusually intolerant of any sort of positive spin. Given our situation this is a good (even necessary) thing, but I suspect that it's different to the attitude of a lot of campaigning groups.

 

This post and the following have been moved from this thread: Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

Apparently the House of Commons debate was offered for this Thursday, declined for reasons below. I don’t know when it was decided, maybe has some relevance to today



I hope there’s awareness we need advanced warning otherwise MPs don’t be briefed

 

Makes sense. A debate just before Christmas is unlikely to get the engagement it deserves.

 

Also I heard other... things... are happening in UK politics. Small detail, I know.

 

Carol Monaghan has just released a short film summarising what she's been up to in 2018. It starts off with the two major debates on ME treatment and research