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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...

Isn't @MEMarge our second representative, proposed by @Graham, and duly seconded?

https://www.healthrising.org/blog/2018/05/16/montreal-me-cfs-i-metabolism-the-main-matter-more-exercise-issues-plus-bad-brain-motor/ Maureen Hanson and Betsy Keller both reported on issues which related to oxygen transfer to the tissues at the Montreal conference. I hope that is correct?

Still no minutes of the 1st May meeting on the Forward ME website. Since Carol Monaghan is now deputy Chair, I had hoped to read something about where the Parliamentary campaign is going.

Well done @Bill. Thanks for writing from across the pond. I do think we need to be pushing our MPs more, but not sure how to do that to those who are determined not to be pushed. Logical persuasion? Hearts and minds?

Good to see my MP there now. I have an email expressing strong support for our cause. He has also written to Jeremy Hunt, and Esther MeVeigh enclosing notes I sent him on the Westminster Hall Debate. I wish I had edited them more carefully- just not enough energy. Hopefully there will be a lot...

Also politicians need our votes at times. If we are persistent enough, it is in the interests of politicians to listen. Our seat changed hands recently, and the previous incumbent was " a new boy" looking to build his majority, and not of a party we supported. It was still possible to get him...

> On 15 May 2018, at 15:22, MORGAN, Nicky <nicky.morgan.mp@parliament.uk> wrote: >> >> Dear ……………....…. >> >> Thank you for your e-mail and I am sorry to hear about your illness. I hope you are feeling better than you were at the end of your e-mail. …………………………………… ……………………….………… >> >> I...