All News 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

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.

MillionsMissing/MillonesAusentes, únete a la protesta en español

September 23, 2016 2 Comments

This is a blog created by spanish-talking pwme to spread the knowledge about ME/CFS and increase activism. Este es un blog sobre SFC/EM en español para visibilizar la enfermedad y aumentar el activismo!

US: #MillionsMissing Protest Demands

September 22, 2016 7 Comments

Overview Ahead of the May 2016 #MillionsMissing protests, members of the US protest steering committee drafted a set of demands to the US government relating to research and medical treatment for ME. After the protest, we solicited broader community feedback via an online survey, which was completed by 191 respondents. The survey demonstrated overwhelming support

Patients’ reanalysis sinks PACE’s “recovery” claims

September 21, 2016 2 Comments

Patients and statisticians have used the recently released data from the PACE trial to show that cognitive behavioural therapy and graded exercise therapy did not help patients in the study to recover. Alem Matthees, an Australian patient who obtained the data after a two-year battle over his Freedom of Information request, applied the study authors’

Sign the UK and Global Petition: It's time to stop GET trials for ME/CFS

September 12, 2016 6 Comments

After months of hard work from #MEAction, #MEAction Network UK, and many others including advocates, government officials, lawyers, and PACE experts, a group of concerned global citizens have crafted a petition to the UK government to stop graded exercise therapy trials in ME/CFS. If this petition reaches 10,000 signatures from UK citizens, its content will

QMUL releases the PACE data

September 9, 2016 44 Comments

Queen Mary University of London (QMUL) has released the PACE data to a patient who requested it under the Freedom of Information Act, as ordered by a recent tribunal, on the last possible day to lodge an appeal against the court’s order. The move follows the publication three days previously of an open letter from

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

Bateman Horne Center Announces New, Larger Location

September 9, 2016 No Comments

Bateman Horne Center has moved into a new, larger facility; plans to expand staff to accommodate increasing numbers of patients, will increase research enrollment, and is expanding patient and provider education efforts.

Category: All News