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Do we have confirmation that this interpretation of voting rights is correct?

I am sorry to see Alem’s family having to deal with this as well as seeing him so very ill as a result of his efforts on behalf of people with ME. To write that tweet was shameful, Michael Sharpe.

Did not someone say that one was a 19 year old patient? Cannot remember where I read this.

I’m whistling in the dark a bit here, but is there not a process that can be applied for if a decision making committee ignores the evidence presented to it and makes a nonsensical decision? In the recesses of my mind something is stirring but maybe I made it up.

Great work @Graham. Am pleased to see they are being tweeted. ETA: I ended that with a smiley face which disappeared. Just imagine a grin.

https://www.nice.org.uk/guidance/indevelopment/gid-ng10091 Trying to look for an announcement from Nice re above. As far as I can see, the last announcement for the group was on 24/10/18. I could find nothing on MEA or AfME fb pages, nor on their web pages ( added)

Statement from INVEST in ME Addendum II - 03 November 2018 The latest news from NICE is that they have now decided to open two new positions in the working group for “Physician with an interest in ME/CFS”. This shambles of a selection process continues to break new ground in levels of...

MEAssociation has posted @Brian Hughes’s blog. I think I read that they weren’t planning to be on the website this weekend for energy reasons so that is great. Spread the word.

After a pretty rough 2 weeks, with the Cochrane issue, the Nice guideline development group formation, the Guardian podcast, it has been wonderful to read Brian’s blog today. I’ve smiled all morning while posting it on fb and starting individual letters to a number of people, including my MP...

He discusses the Guardian podcast. It’s bang up to date.

I am hugely grateful for your interest and commitment to the ME community but I am struggling to accept the “behind the scenes” agenda. I truly hope it works out.

I think we need to be writing individually to Nice and our MPs. My DH stepped up and has just posted our letter to Sir Andrew. Then we need to use the Parliamentary process to the greatest effect to support Carol and others in their efforts on our behalf.

Stay strong @ladycatlover. My walking limit is about the same as yours and same age as you, and it’s a nightmare. I was distraught yesterday after 4 days in bed but the H of C cheered me up. I want to be here to see that lot get their comeuppance. Even more cheered this pm when I saw the...

Thanks @It’s M.E. Linda

Can anyone fill me in with the names of the 4 speakers to the Back Benchers Committee? As well as Carol and Nicky Morgan, please can someone tell me the names of the men who spoke. Also I didn’t understand the reference to three and a half parties being represented. I know where Carol and Nicky...

Just too pem’ed to post currently partly as a result of seeing grandchildren last week. Truly felt so, so sad at having to say ‘no’ to granddaughter asking me to play a board game with her.

Why has Nice revealed the names of the members of the GDG in different sized groups? How does CS know there are more to come? Curious.

Sorry @rvallee It is ‘edited to add.’ It would be more efficient to post a photo but that’s beyond me currently.

https://www.facebook.com/meassociation/ I have found some comments by Dr Shepherd. I do find the order in which posts come up is erratic so I hope the relevant one isn’t omitted. It’s during the course of a long discussion started about ME care in Wales. Dr S talks about informed consent and...

Should not the ME charities be involved with this? We are going to be scuppered with this gdg. Why are they releasing them piecemeal? @Afme @MEA ETA: rewording of last sentence