MEAction UK has sent an open letter to Matt Hancock asking him to recognise the harm caused by GET

https://www.meaction.net/2020/07/15...arming-people-with-me-and-covid-long-haulers/

 

Done.

 

might be worth tweeting a few MPs?
eg Jeremy Hunt
https://twitter.com/Jeremy_Hunt

 

Done. To be fair, my MP Julian Sturdy has been supportive of pwME over the years.

 

Done.
My MP is Sir Ed Davey and I revised the ME Action letter to remind him of his statement in the WH debate in June 2018. He has also been very supportive.

"Real harm is being caused by some of the therapies recommended in the guidelines. If that is the evidence from ME sufferers—I am not a scientist, but from what I have read, that experience is widely shared—it is up to the Minister, working with the chief medical officer and others, to question whether the NICE guidelines should be suspended, at least with respect to GET. If GPs, perhaps because they have not been trained, are making medical prescriptions for treatment following NICE guidelines because Ministers and the chief medical officer have not acted, if that treatment is harming people, and if that continues until October 2020 there will, as I said in my intervention, be a case for those who are harmed to go to court and seek compensation. " ( Sir Ed Davey, Hansard)

 

I have tweeted a message to all 6 County MPs.

My own MP was very pleased to hear that DecodeME had been funded and assured my group that he continues to support us.

Update: email has been personalised and sent to my MP 16 July.

ETA update

 

I've also contacted my MP. The automated response is that his office is really busy at the moment because of covid so it's taking longer than normal to process peoples submissions, but hopefully it'll get through to him.