Arts & Letters 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

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

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

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.

Whether I like it or not

September 20, 2016 No Comments

Over the years I discarded several pairs of shoes. I no longer felt comfortable wearing high heels, nor needed aerobic shoes, or did not have the stamina for a pair of boots that were simply too heavy. With hindsight, I should have kept that pair of boots, because it might have been helpful with losing

Dozens of US representatives support letter to NIH for ME/CFS research

September 9, 2016 14 Comments

A total of 55 members of Congress have signed on to a letter asking NIH Director Francis Collins: 1) to consider in a timely manner the input received through the NIH Request for Information, and 2) to update Congress on the NIH’s plans for ME/CFS research through 2018. The letter was co-sponsored by Rep. Zoe

Visit the new #MillionsMissing website!

September 6, 2016 2 Comments

Ever since the #MillionsMissing protests in May, volunteers have been working on a new site design for #MillionsMissing, and we are pleased to announce that it has just launched. The new site is the work of professional designers and programmers who have generously donated their time to make this happen, as well as numerous volunteers

UK: Tribunal Orders Release of Withheld Data

September 6, 2016 1 Comment

This #MEAction in the UK press release on the PACE trial decision was written by a committed team of patient volunteers, and has resulted in much of the press coverage about this important tribunal decision. You can read the full press release by clicking in the upper right-hand corner of the document below. Incompatible browser?

Category: Arts & Letters