2018

http://millionsmissing.meaction.net/ More details will follow. Adding this as a calendar event. ______________________________________________________ DAY OF ACTION Demand equality for people with Myalgic Encephalomyelitis #MillionsMissing is a movement to raise awareness for M.E., an...

A small group of ME/CFS patients with an interest in research, including Simon McGrath, Graham McPhee, Carly Maryhew and others, are asking for the help of fellow ME/CFS patients with an important issue that will affect biomedical research in the US and elsewhere for years to come. The NIH/CDC...

I've put both a report of my impressions of the meeting, and my list of points to raise, into this blog post. http://sallyjustme.blogspot.co.uk/2018/01/nice-stakeholder-meeting-for-cg53.html Both items also exist as "Notes" on my Facebook wall..... And now I need to sleep... xx

https://www.meaction.net/2018/01/15/the-public-testifies-about-me

New blog post from David Tuller: Trial By Error: My Six-Month Review Given the amount of reporting still left to be done, I will be deciding in the next couple of months whether to conduct another crowdfunding campaign to support another year of work after June 30th. :woot:

Posted by: "Dr. Marc-Alexander Fluks" Sent: Saturday 13 January 2018 10:46 To: LOCALME <localme@yahoogroups.com>; MEACTIONUK <meactionuk@yahoogroups.com>; MECHAT-L <mechat-l@listserv.icors.org>; Colin Barton <colin.barton@btinternet.com> Subject: Alastair Miller: The prognosis of CFS/ME The...

" The best thing for patients and their care is to admit you don’t know everything. As a doctor, it is unnerving to confront an ailment that you don’t immediately know how to conquer. All those years of training, all those hours of study — and yet at some point, every doctor is confronted by...

Just announced on the AfME Facebook page

Here's an excellent article published at independent.co.uk, plus on a number of other news sites: "Time for Unrest: Why patients with ME are demanding justice A new film sheds light on a condition that is largely ignored. Nathalie Wright reports on the struggles patients face to be taken...

http://events.stanford.edu/events/743/74379/ You may opt to attend the lecture in person at Hoover Pavilion (requires registration) OR choose to watch the live webcast. Presented by Stanford Health Library Chronic Fatigue Syndrome (CFS) is a complex, multifaceted disorder characterized by...

https://www.nytimes.com/2018/01/05/nyregion/how-howard-bloom-writer-and-former-publicist-spends-his-sundays.html

Paywalled at http://www.tandfonline.com/doi/abs/10.1080/21641846.2018.1419553?journalCode=rftg20

https://www.rcpch.ac.uk/events/annual-conference Despite the theme, Crawley will be there. Day One, "How to manage CFS/ME, fatigue and pain in children, Professor Esther Crawley" Other highlights Day One, "The role of systematic family work in the management of children with severe medically...

Another blog post from David Tuller Trial By Error: COPE to BMJ Open: More Details, Please! - To sum up: The activities in the school absence study do not qualify as “service evaluation” by any standard. As this response from the COPE forum makes clear, the investigators should not have...

https://www.bacme.info/upcoming-events, information from https://www.bacme.info/civicrm/event/info?id=2 (file will automatically download if this link is followed). National Conference 14-15th March 2018, Liverpool ‘Changing Times’ The Science… Prof Ben Z Katz, Children’s Hospital of...

Elevated brain natriuretic peptide levels in chronic fatigue syndrome associate with cardiac dysfunction: a case control study Cara Tomas,1Andreas Finkelmeyer,1,2Tim Hodgson,2Laura MacLachlan,1Guy A MacGowan, 1,3Andrew M Blamire,1,2Julia L Newton1,4...

Mentioned by Dr Alain Moreau in this evening's CIND webinar - more details to come, he says.

I've heard that NICE have sent invites out to Stakeholder groups for a "Guideline stakeholder engagement workshop" to be held in January 2018. This is for the CFS/ME Diagnosis and Management Guideline (October 2020) Any members of registered Stakeholder groups here and anyone attending?

Just in case this is of interest to anyone. Not a journal I'm familiar with from memory so may not have much status.

Galway Premiere of the award winning medical documentary film 'Unrest' (97 mins) about Myalgic Encephalomyelitis (M.E). " The screening of Unrest will be preceded by a brief introduction and followed by a 15-minute Q&A session, where M.E patients will reflect on their experiences of being...