Carol Monaghan granted a Backbench debate (UK Parliament) Thursday 24th January 2019

Crumbs. I just dont know what to think about this. I mean in many senses its a huge victory. But if it doesnt go well because those speaking for us dont really understand the issues & start saying things like 'ME is real, it's not psychological', then we're in deep trouble... & then we wont get another opportunity until we have a major scientific breakthrough.

There is a terrifying amount riding on this & i hope people arent going to get their hopes up too much. They've squeezed it in during the brexit debacle so it wont get any coverage I wouldnt think. It's short notice & goodness me, i hope our advocates are ready!

Personally I think we'll be very lucky if it is a draw. not to be a nay sayer, but i know how powerful, well connected & skilled in political manoeuvring Wessely, Sharpe et al are, and how well practised their bogus whitewashing arguments are.
Not to be a naysayer, i hope it'll be the watershed moment that the Canary are promoting it as. But if i'm honest I feel quite worried about it. As i did about the judicial review of NICE GL.
I hope my fears are proved wrong this time.

Regardless, I'm hugely grateful to Carol & all involved.

I might disappear for a bit & bury my head, i dont think i have the courage to watch it play out.

 

Hopefully MEA and MEAction will be drafting their press releases as soon as the MP letters advice is out.

 

I wrote to my MP this afternoon and he has already replied. He has a “major diary clash”. His office is seeing if anything can be done.....

He (Sir Ed Davey) spoke very well at the last WH debate so am very disappointed. Just keeping fingers crossed for the time being.

I do think it is very important for us to present a good argument so I hope the charities prepare the briefing documents well. I hope pwme have time to see and brief their MPs too. Not much time......

ETA: anyone know if Nicky Morgan has confirmed her attendance?
ETA2: am still hoping Ed Davey can sort something out

 

Oh no, there’s a real problem with this short notice

 

I have no idea how much notice is usual. Anyone know?

 

I seem to remember that the SMC do an ME press release a day or so before positive news.

 

MEAction MP contact tools

https://act.meaction.net/page/7340/action/1

 

You got there before me @Andy! Thanks!

The tool lets you both email and tweet your MP. Please do share widely.

Also #MEAction UK article here

And parliamentary briefing here

 

Does this new call to action need a thread of its own?

I'm not a fan of thread-proliferation generally but a call to action can easily get buried in a thread that has announced some news and that people don't feel they need to keep reading. This is an important call to action - maybe one of the most important we've ever had...

 

I think you are somewhat misguided, Simon Wessely retired from ME years ago.

 

I've sent the following to my MP via https://act.meaction.net/page/7340/action/1

"As previously stated to you, my life has been wrecked by ME since 1995. Luckily I have not been subjected to the appallingly-dangerous and ill-advised Graded Exercise Therapy, or Cognitive Behaviour Therapy, but I experienced a very-worrying worsening in March 2016, six months before I was due to get my pension, and as a result of which I was unable to claim my last 6 months of benefit.

I am sure that many people with ME (pwME) have much worse outcomes than myself, and I know that a significant number die - some deliberately due to the appalling way they are treated, and some probably because they simply cannot access services.

I hope that you have found time to watch the Oscar-shortlisted documentary Unrest (now available on Netflix: https://www.netflix.com/title/80168300)

I also hope that the short notice given will not prevent you from attending this important debate. An estimated 250,000 people in the UK are sufferers - approximately 400 patients per constitiency.

Yours in anticipation,

..."

Added at 1556:

Title of email "Upcoming House of Commons Main Chamber Debate on Myalgic Encephalomyelitis"

 

If people want to use a template letter most of the charities are providing them. I personally think #MEActions is the best here, as linked above too.

https://act.meaction.net/page/7340/action/1?locale=en-GB

 

It's his brain child, his crowning achievement. He pretends to maintain some distance and independence from it but he was very much involved in it. His involvement is probably much more significant than we already know. Not that we could show much or that it makes a difference, but he will be defending it like his reputation depended on it. It absolutely does. It will probably be behind the scenes, though, so not much we can do until people see him as a liability.

 

You aren't alone in not remembering..

https://www.s4me.info/posts/82339/

 

Possible, but the SMC's influence over the UK press means we should not expect much. Maybe this will be the tipping point where the SMC's role as PR representatives to Wesselly's work is too obvious to ignore. Any good journalist should expect that their own reputation will be hurt by continuing to be compliant stenographers for what is clearly an ideological agenda.

No one wants to admit they were so easily conned. It's particularly embarrassing for any news media because their blunders are very visible in some of their past uncritical "reporting" and having given ideologues a platform to say anything they want unchallenged. Especially for the outlets that published the harassment allegations, doing a 180 will require acknowledging they have failed massively in their role, which is a huge can of worms to open since it would put some of the embarrassment on the SMC and how much influence it has gained over the years.

 

Sure, just like Sharpe. Who keeps publishing despite claiming he has been chased out of town. Same with Crawley.

Wessely was very much involved in PACE. From a certain distance, sure, but this was too important to his career. He's directly named as center leader in the TMG notes and trial protocol and this is all built on his career's work. His legacy depends on it and will turn very sour once it is discredited. That is way too much to lose.

 

Thank you. So SW was involved in PACE, at least regards writing the manuals, albeit he forgot that ...

... and this ...

 

When I filled in the form and sent my email, I got an autoreply from my MP asking me to provide my full name and address if I hadn't already - so I sent a second email.

@Andy, I don't know if you want to mention this in your post above? There's space where you could provide your full address if you realised you needed to.

 

This issue has now been fixed by MEAction. The form now requests full address and postcode.