#meaction

" #MEAction will host a seminar for clinicians recognizing and addressing post-viral ME/CFS. The seminar will be panel-style with time for questions from the audience, and it will feature a toolkit of the panelists’ most useful resources. This seminar is only for clinicians and medical students...

email from #MEAction

https://www.meaction.net/2020/03/04/invite-your-doctor-to-learn-about-me-medical-education-event-in-london/

#MEAction has posted an interview with Dr. Lucinda Batemen of the Bateman Horne Centre of Excellence (BHC) for ME/CFS and Fibromyalgia. https://www.meaction.net/2020/02/18/meet-the-scientist-interview-with-dr-lucinda-bateman/

https://www.meaction.net/2020/02/05/the-eu-committee-on-petitions-is-preparing-a-resolution-on-me/

#MEAction UK has a new project called "Take ME Seriously" Update: Anyone can join in this advocacy action. It is not just for UK residents. They are collecting comments and signatures regarding the NICE (National Institute for Health and Care Excellence) ME/CFS treatment guidelines in the UK...

From an e-mail from #MEAction: It’s already time to start thinking and planning for #MillionsMissing 2020! This year #MillionsMissing global protests will take place between May 9th-May 17th. Our registration pages and toolkits will be available soon. #MillionsMissing is a global campaign...

MEAction has an article reporting on their "Cards to Koroshetz" campaign. They asked folks to send holiday cards to Dr. Koroshetz, Director of NINDS (National Institute of Neurological Disorders and Stroke) at NIH, to tell their stories about living with ME...

MEAction performed a survey earlier this year, gathering data to submit to NICE for their review of the ME guideline. I think there’s already a link to the full report on the forum but just in case, it can be found here...

I haven't seen this posted. It's a personal account by a UK pwME who participated in a study, pre-PACE, using GET/CBT. Very unfortunately, and fairly predictably the author of this story worsened from this treatment. She notes that some others in the study did not have symptoms like hers...

An excerpt from today's ME Action email about the #NotEnough4ME campaign: The idea (in brief) is to make a video saying his response is not enough and post it on social media with hashtag #NotEnough4ME and tag Dr. Koroshetz and NIH. Link with full instructions -...

https://www.meaction.net/2019/11/14/demystifying-the-diagnostic-criteria/

Your experience of ME services - Survey report by #MEAction UK Article: https://www.meaction.net/2019/10/17/me-services-in-the-uk-not-fit-for-purpose/ Full report: https://www.meaction.net/wp-content/uploads/2019/10/Your-experience-of-ME-services-Survey-report-by-MEAction-UK.pdf Results...

After a brief pause the "Postcards to Doctors" project has been relaunched as of Oct. 1. The aim of this project is to have patients (as well as friends, family and other allies) write doctors to urge them take a continuing medical education course. See Unrest medical education for information...

https://www.meaction.net/board-of-directors/ I don’t think this has been posted. The meetings are by video conference you don’t need to be US based.

News about Evelien's testimony to Parliament has already been posted on the thread about the EU Petition but I thought the testimony deserved its own thread. This article by #MEAction includes a video: https://www.meaction.net/2019/10/03/me-activist-testifies-before-eu-parliament/

https://www.meaction.net/2019/10/03/inside-outside-activism-why-we-must-shout-in-the-streets-and-sit-at-the-table/

I would like to send the following proposal to ME Action, as it is currently in the process of specifying its core values and principles. I’m inviting other ME/CFS advocates and members of ME/CFS community to co-sign the statement if they agree with the proposal. I prefer to make the statement...

From an email newsletter. On behalf of #MEAction International’s board, staff, volunteers and everyone who form a part of our wider community, I want to welcome and invite you to participate in what we are calling “Values and Policy Initiative” an ambitious, six-month initiative to learn...

https://www.meaction.net/2019/09/21/meaction-advocates-will-speak-at-stanford-medx-conference-this-weekend/?mc_cid=d8cd069995&mc_eid=c1fdea04b1 eta: 10.30 pm GMT eta2: