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Atlanta Residents Rally to Raise Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

September 24, 2016 No Comments

MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Madison Donzis | [email protected] | (210) 488-6220 TUESDAY 1PM: Atlanta Residents Rally to Raise Support for Patients Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Thousands Worldwide Join an International Day of Action Urging Public Health Officials to Ramp Up Funding for ME/CFS Research, Clinical Trials and

Protests Across the UK Highlight the Lack of Support for Patients Suffering from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

September 24, 2016 No Comments

MEDIA ADVISORY FOR: Tuesday, 27 September, 2016 TUESDAY: Protests Across the UK Highlight the Lack of Support for Patients Suffering from Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Thousands Worldwide Take Part In International Day of Action Urging Government Officials to Ramp Up Funding for ME/CFS Research, Clinical Trials and Education On Tuesday, September 27th, hundreds

Thousands Protest in 24 Cities Worldwide Demanding Support for People Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

September 24, 2016 No Comments

MEDIA ADVISORY FOR: Tuesday, September 27, 2016 CONTACT: Brett Abrams | +1-516-841-1105 | [email protected] 09/27: Thousands Protest in 24 Cities Worldwide Demanding Support for People Suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome #MillionsMissing International Day of Action Urges Public Health Officials to Ramp Up Funding for ME/CFS Research, Clinical Trials and Education Myalgic Encephalomyelitis

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

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

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?

Canada: Research Reviewers as Disease Denialists

September 5, 2016 5 Comments

Press Release Toronto – August 28, 2016 – “This is ludicrous!” writes Dr. Ian Hyams about the Canadian Institute of Health Research (CIHR) decision to deny funding for a networking grant for the neurological disease Myalgic Encephalomyelitis (ME). Dr. Hyams, Medical Director of the Chronic Pain and Fatigue Clinic, expressed further concern stating that “the

Urgent: Take part in the US Congressional Call to Action

August 25, 2016 15 Comments

#MEAction reported recently that the #MillionsMissing protests led to a number of meetings with government officials, including a meeting with Assistant Secretary for Health and Human Services Karen DeSalvo, and several meetings with congressional representatives. Continued work from the Congressional team at #MEAction has yielded fruit. [pullquote align=”left” cite=”” link=”” color=”” class=”” size=””]Reps Zoe Lofgren

Empty shoes

August 15, 2016 2 Comments

A few years after getting ill, I discovered that I can write interesting stories about things that happen inside or close to my home. For instance about birds or cats visiting our garden (preferably not at the same time), books, music or even what we had for dinner. This time it is about my shoes, my empty shoes. Who needs shoes while lying on the sofa, anyway?

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