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@Gecko I would need to think about your theory but I am going away in 12 hours time! It would be good to understand a bit more about the workings of Parliament; how the Parliamentary process can be used to progress our agenda. I think we need to use that. This is a big story. I am not sure...

When I wrote to my MP a while ago, he later sent me a copy of a letter he has sent to Jeremy Hunt and Esther McVeigh (DWP)so very glad he is pursuing this two Dept approach. Have not heard if he has had a reply from either. I hope to see him soon.

Thank you for the link @Gecko .@Andy, and any others. I watched it and have just written to my MP to ask him to use his influence to progress the issue to a full debate. We have already had the WH debate in Feb. I don't know if it's usual to have more than one. Nicky Morgan spoke well again...

http://www.forward-me.org.uk/1st May 2018.htm Long agenda with some interesting topics: 1. Carol Monaghan becomes deputy Chair 2. Afme's new advocacy member based in Geneva is introduced 3. An ME patient, Mrs Nina Muirhead was introduced by CS. She is a doctor, a surgeon, did not cover ME in...

In so far as the Davis/Dafoe's spiritual life is anything to do with us, and I don't think it is- freedom of belief etc-, I think they follow the Native American Indian Cherokee tradition. If I remember correctly, Ron and Janet led a song from that tradition at the first #MillionsMissing...

For me there are two issues 1. Is the Whitney plea. I didn't want to participate in that and didn't. OTOH I don't feel so strongly as others that it's awful. It's an advocacy tool, and not all advocacy tools are wise etc ( I do think #MillionsMissing, #CanyouseeME now? And the shoes are great...

Have posted whole article in a new thread. MOD- do we need to combine.

https://www.thetimes.co.uk/article/me-sufferer-merryn-crofts-who-was-dismissed-as-hysterical-vindicated-in-death-lq9j2lc7w The Times today, page 25, also online. Such a different tone from previous articles. Great quote from Charles Shepherd "the difference between ME and just feeling tired is...

Open Medicine Foundation's second conference is coming up and I think they have added a third day. Date currently escaping me. EDIT:https://www.omf.ngo/community-symposium-2/ 29/09/18 Livestream available. Cannot find reference to 3 days on above link but will post if I come across it.

https://www.omf.ngo/2018/05/25/omf-funded-research-overview-2018/ OMF has just posted a list of their funded research. Lots going on. I expect as a group we'll have different interests. I am watching the red blood cell lack of pliability with considerable interest. EDIT: title should read...

http://www.meassociation.org.uk/2018/05/nice-draft-scoping-report-published/ NICE is holding its scoping meeting today so hopefully we have several members there including @Jonathan Edwards and @MEMarge representing this group. The ME Association has helpfully published the timetable for the...

@Gary Burgess . Just listened to this week's programme and then posted it on my fb page. Excellent programme. You are really good at drawing in the listener. Thank you for your work.

@Esther12 I wish that this bit had not been included in the EDM, I really don't see any benefit to it, and think it would be stronger without: "recognises the fantastic work campaigners and charities are doing to highlight ME as a physical condition which is not all in the mind". Maybe just...

I have just been back on to the hospital's fb page where comments have continued to flood in about the deletion of posts. Several have asked for evidence of offensive posts. The discussion taking place is engaged and informed: real people with ME passionately discussing issues. Link below. The...

@AR68 Please feel free to contact the hospital. I am down for a root canal treatment today so will be inactive.

I have received the following reply to my post from the Royal Liverpool and Broadgreen University hospital. @Joan Crawford of Chester MESH whose members have experience of the hospital has taken up the issue. Hi Gill. Thanks again for your message and apologies for the delay in responding, the...

Thank you for getting in touch Emilia Bona. I commented but my comment is still there reproduced on this page. I commented relatively late. I wonder if @Tom Kindlon is able to help. I also see that someone called Alisha Whittam commented above in the first post asking people who had had their...

Lecturer in child health. Esther Crawley? Mustn't be negative befor he begins his work.

@MEMarge Seems strange that different rules are being applied to different groups. I think this is going to be a highly important period; also it will be important who is Chair. Any news on that?

https://www.nice.org.uk/guidance/cg53/documents/draft-scope-for-consultation-chronic-fatigue-syndromemyalgic-encephalomyelitis2 Nice scoping document. EDIT: perhaps there is another thread since this one hasn't been active since end of March and doesn't include discussion that took place about...