2021 UK: ME Association - NICE and the unpublished ME/CFS guideline - contact your MP

Split from NICE pauses publication of updated ME/CFS guideline hours before publication was due - 17th August 2021


Recent ME Association post on twitter, with link to template letter for MP's

https://twitter.com/user/status/1430109321535369227


Edited to add direct link to ME Association page.

https://meassociation.org.uk/2021/08/contact-your-mp-about-the-nice-guideline-delay/

 

I have sent a slightly-altered version to my MP Scott Mann.

 

Thanks - done. Very helpful to have a template.

 

Have adapted template to write to Anneliese Dodds

 

I emailed my MP, Clive Betts, on Sunday before the template letter appeared so have had to email him again to ask him to support the APPG letter. I've had a reply back to say that he will add his name to that and is also doing his own letter to NICE.

He had been previously supportive, which made it easier, as he wrote to the then Chief Exec of NICE, Sir Andrew Dillon and Seema Kennedy MP in 2019 to try and get GET & CBT suspended whilst the guideline review was taking place.

 

Incredibly useful - thank you!

 

Just to encourage others who may be considering sending their own version of the ME Association template letter to their MP (or asking family and friends to do so), I have received written confirmation today from my MP that he has made representations to NICE on my behalf. I also intend to meet my MP, who attends cabinet, in person next week to keep up the momentum.

Other forms of advocacy and awareness raising will be equally important, but I'm pleased - surprised, even - that this route has yielded useful and quick results.

 

Apologies for the further message but I wanted to suggest that those with the energy and inclination could - in addition to emailing their MP - also ask family members and close friends who live in different constituencies to send a similar version of the email to their MPs. This way one person's efforts could lead to multiple MPs being contacted, a multiplier effect.

 

Sent mine to Andrea Leadsom