Awareness Archives

Director Collins responds to 55 Congressional Representatives' Letter of Concern

October 17, 2016 1 Comment

Recently, #MEAction in conjunction with other advocacy organizations and many individual advocates have also successfully lobbied Congressional members to achieve: Favorable language to ME in the FY 2016 House appropriations report; Congressional tweets of support for the #MillionsMissing Day of Action on Sept. 27, 2016, which called attention to the millions of Americans struck down by

No more 'should': the aim to stop punishing myself for having ME

October 15, 2016 5 Comments

Have you ever noticed how so many of us beat ourselves up for having this chronic illness, almost as if it is invisible even to us, even as we feel the pain and exhaustion? While we feel the need to not give up and keep a hold of all we can of our lives, I’m becoming aware that I for one often get this fight tangled up with a lot of damaging self-judgement.

Increasing Efficacy of the CDC’s ME/CFS Educational Program

October 13, 2016 4 Comments

INTRODUCTION The Centers for Disease Control (CDC) is revising and creating new educational materials for its Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) educational program. The hope is that this fourth try at producing ME/CFS educational materials will result in equality of care for ME/CFS patients and they will, for the first time, experience appropriate care throughout

Fiscal Year 2016 Request for Applications Tally

October 12, 2016 1 Comment

Despite advocates’ expectations, Fiscal Year 2016 ended with no RFAs issued for ME research.

SPEECHES FROM THE FRONT LINES OF #MILLIONSMISSING: TASHA & ZARA

October 11, 2016 1 Comment

FROM THE FRONT LINES OF #MILLIONSMISSING ROUND 2: SPEECHES BY TASHA AND HER DAUGHTER ZARA (AT NYC PROTEST)

Join the 'Patient uprising from our beds': Melbourne MillionsMissing on 12 October

October 10, 2016 No Comments

Melbourne’s MillionsMissing will be on the steps of Parliament House, Spring St, Melbourne, from 1pm to 2pm on Wednesday 12 October 2016.

Attend the IACFS/ME conference this month

October 10, 2016 No Comments

Where does rituximab fit in among the treatment options for ME/CFS? What is the US government’s research plan? How can I increase the chances my disability application will be or continue to be approved? What medications can I try for fibromyalgia now that morphine and related prescriptions are restricted? Come to our international scientific

Join us in the #isignedfive challenge!

September 23, 2016 No Comments

Want a way to raise your voice this #MillionsMissing but don’t know how? Perhaps you’re unable to attend a protest in person, or want to do a little something extra to make a difference. The stopGET petition against graded exercise therapy trials is one of the most vital actions circulating at the moment. With a

The PACE Trial Fiasco

September 22, 2016 5 Comments

This study is the worst kind of science, and noticing flaws does not mean we are sociopaths or psychopaths. Neither does it mean we’re close-minded members of a group that’s only interested in our own views.

A Plea for Decency to White, Chalder & Sharpe

September 21, 2016 1 Comment

The time for decency in the face of the overwhelming failure of PACE for many has justifiably passed you by, but potential futility aside, I make this appeal regardless. Every day there is a new ME/CFS patient. Today you can spare that patient from harm. You can spare them from being accused of malingering by their own friends and family. You can spare them from wrongful imprisonment in a psychiatric ward. Today you can set ME/CFS research on an expedited path that leads to real treatments and ultimately a cure. End this tragedy now.

Category: Awareness