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A letter from the NIH ME/CFS Collaborative Research Center consortium Community Advisory Committee to Francis Collins, Apr 2021

"Dear Dr. Collins, We are a Community Advisory Committee established with the support of the NIH to advise the ME/CFS Collaborative Research...

Thread by: Andy, Apr 19, 2021, 2 replies, in forum: Epidemics (including Covid-19)
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#MEAction: press outreach campaign

from an email " Over the past year, #MEAction has focused on reaching out to the national press to educate journalists and medical professionals...

Thread by: Sly Saint, Apr 18, 2021, 0 replies, in forum: Advocacy Projects and Campaigns
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USA: News from #MEAction

From an email: #MEAction to Hold Press Conference on ME & long COVID! #MEAction is thrilled to announce that we are hosting a press conference...

Thread by: Trish, Mar 18, 2021, 5 replies, in forum: News from Organisations
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#MEAction: PACING AND MANAGEMENT GUIDE FOR ME/CFS

https://www.meaction.net/wp-content/uploads/2020/10/Pacing-and-Management-Guide-for-ME_CFS-8.pdf

Thread by: Sly Saint, Oct 28, 2020, 11 replies, in forum: General ME/CFS News
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Stop. Rest. Pace. Campaign

Stop. Rest. Pace. - New global information campaign around Long Covid, ME, and PEM. We knew this was coming. So many people with myalgic...

Thread by: Gecko, Oct 21, 2020, 3 replies, in forum: Advocacy Projects and Campaigns
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USA: #MEAction ME/CFS clinical seminars

" #MEAction will host a seminar for clinicians recognizing and addressing post-viral ME/CFS. The seminar will be panel-style with time for...

Thread by: Sly Saint, Jul 14, 2020, 2 replies, in forum: General ME/CFS News
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#MillionsMissing 2020 UK

email from #MEAction With support from a professional filmmaker, we are putting together a short film for #MillionsMissing 2020 in the UK. If you...

Thread by: Sly Saint, Apr 20, 2020, 1 replies, in forum: Advocacy Projects and Campaigns
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MEAction: INVITE YOUR DOCTOR TO LEARN ABOUT ME – MEDICAL EDUCATION EVENT IN LONDON, 1st April 2020

As part of #MEAction’s continued efforts to deliver medical education tools and events to healthcare professionals, #MEAction UK has organised a...

Thread by: Andy, Mar 4, 2020, 28 replies, in forum: Advocacy Projects and Campaigns
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ME Action: The EU committee on petition is preparing a resolution on ME

"Hi everyone! Time for an update: We have super important news! The Committee on Petitions is preparing a resolution on ME! This is the...

Thread by: Michiel Tack, Feb 9, 2020, 68 replies, in forum: Advocacy Projects and Campaigns
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#MEAction UK: "Take ME Seriously" project needs comments & signatures to send to NICE

#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...

Thread by: ahimsa, Feb 7, 2020, 14 replies, in forum: Advocacy Action Alerts
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Millions Missing events, 9th to 17th May 2020

From an e-mail from #MEAction: It’s already time to start thinking and planning for #MillionsMissing 2020! This year #MillionsMissing global...

Thread by: Trish, Feb 7, 2020, 7 replies, in forum: Advocacy Projects and Campaigns
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A Trial of ME - Elizabeth's Story. #MEAction article, November 2019

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...

Thread by: DokaGirl, Nov 24, 2019, 21 replies, in forum: General ME/CFS News
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MEAction: "DEMYSTIFYING THE DIAGNOSTIC CRITERIA FOR ME AND RELATED DISEASE"

We know that our community continues to wrestle over the appropriate diagnostic criteria for myalgic encephalomyelitis to the point that it has...

Thread by: Andy, Nov 14, 2019, 54 replies, in forum: Diagnostic Guidelines
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Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose'

Your experience of ME services - Survey report by #MEAction UK Article:...

Thread by: Gecko, Oct 17, 2019, 42 replies, in forum: General ME/CFS News
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Postcards to Doctors returns! (project from ME Action)

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...

Thread by: ahimsa, Oct 10, 2019, 3 replies, in forum: Advocacy Projects and Campaigns
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A proposal for ME Action: a commitment to evidence-based medicine

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...

Thread by: Michiel Tack, Oct 2, 2019, 154 replies, in forum: General Advocacy Discussions
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MEAction: Join Our Values and Policy Initiative! September 2019

From an email newsletter. On behalf of #MEAction International’s board, staff, volunteers and everyone who form a part of our wider community, I...

Thread by: Andy, Sep 25, 2019, 72 replies, in forum: Advocacy Projects and Campaigns
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#MEAction Advocates will Speak at Stanford MEDx Conference this Weekend (Sun 22 Sep 2019)

#MEAction advocate, Terri Wilder, and #MEAction board member, Ryan Prior, are co-presenting at the Stanford MEDx conference this weekend about how...

Thread by: Sly Saint, Sep 21, 2019, 3 replies, in forum: Advocacy Action Alerts
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Postcards to Doctors - new project from ME Action

A new project from ME Action: #MEAction is excited to announce the launch of our Postcards to Doctors medical education campaign. Send...

Thread by: ahimsa, Aug 1, 2019, 15 replies, in forum: Advocacy Projects and Campaigns
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ME Advocacy Network Australia (formerly MEAction Australia)

From their Facebook post We are excited to announce that as of today we are rebranding as ME Advocacy Network Australia, affectionately known as...

Thread by: Andy, Jun 24, 2019, 1 replies, in forum: General ME/CFS News

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