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Thank you @NelliePledge. I lost power .....rather dramatically....when a local substation blew up just after I sent my post. No WiFi, lights, power etc. Fire service needed to put out fire. Was unable to research further. But thank you for your explanation.

https://www.meassociation.org.uk/2007/11/house-of-commons-adjournment-debate/ Have just found this when looking for the announcement from last week. Is there anyone around who can explain it a bit more? @Stewart

Carol Monaghan was sitting towards the right end of the front row in the House of Commons this afternoon, Nicky Morgan on back row well behind PM. Not relevant to debate I know but I was interested. Have already written to my MP to say debate has been agreed so I really hope it has been. Can’t...

Just seen on facebook ETA: off to bed. Busy day tomorrow.

Not feeling very hopeful @Sunshine3 especially since I am having a really bad day ( much worse than usual) and have to go for heart tests at the Brompton tomorrow. Just feel we should push them to answer our questions but I am not fit to do it for the time being.

I have read somewhere something to the effect “template question.......template reply.” But yes, it takes much energy to do an individual letter and my carer/DH does ours. Would not be possible for me to do it. It takes a lot from him too but we copy in our MP and have sometimes seemed to get...

Copied across from other thread. ETA: Nice: co-signees Burton letter We sent an individual letter by post on 1st November. No reply received so far. Like @Michiel Tack we hope the individual points made will receive full attention but are not not holding our breath either......

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...