Category: Science

The ME/CFS Harvard Collaboration Holds its First Symposium

 By Christopher Armstrong, PhD, OMF Science Liaison  When the Harvard ME/CFS Collaborative at Harvard Affiliated Hospitals was initiated last year with funds from Open Medicine Foundation (OMF), it was considered a commitment to co-leaders, Ronald G. Tompkins, MD, ScD, and Wenzhong Xiao, PhD, to begin a research operation in one of the world’s most respected academic institutions. The Harvard

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Introducing #MEAction’s 2019 ME Research Summary

We are thrilled to announce the release of our 2019 research summary reviewing the most current and important research into myalgic encephalomyelitis (ME) and ME/CFS of the past 10 years. Our research summary provides essential stakeholders with access to a compiled, digestible resource that can help them excel in their respective areas of expertise, including clinicians,

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Enrolling: EDS Genetics Study

What: The Ehlers-Danlos Syndrome (EDS) Society is recruiting individuals to participate in a genetic evaluation study. ME/CFS and EDS have a range of similarities and overlap. EDS is a connective tissue disorder in which musculoskeletal pain, joint pain/hypermobility, and fragile skin are considered common manifestations. Who: 1000 individuals with Hypermobile EDS as well as their family

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Read #MEAction’s Request for Information response to the NIH

The story so far NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis.   With only a few weeks’ turn-around, the #MEAction NIH working group produced a compelling response based on information conveyed in

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Enrolling: Stony Brook University ANS Study

Who:  Researchers at Stony Brook University– funded by the National Institue of Health What: The goal of this study is to use data obtained from participants to compare the relationships between fatigue, physical activities and autonomic function (heart rate variability). Individuals with ME/CFS as well as healthy controls are needed. Those who participate over the entire

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$1M Biobank Project for Australia

A charitable trust, the Mason Foundation, is asking researchers to submit proposals for a biobank and patient registry as well as a research project that uses the data and specimens. The trust will grant $200,000 a year for five years for the biobank project, $1 million in total. Applications are now open and close on 30 April 2019.

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#MEAction Medical Travel Scholarship Award Winners

#MEAction Medical Travel Scholarship   Because of the generous donation from a private family foundation, #MEAction has been able to provide travel scholarships to medical practitioners and medical students to attend the National Institutes of Health conference on ME this Thursday and Friday.   The goal of the meeting is to showcase high-quality studies to

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CBT and GET survey results published by Forward-ME Group

In January 2019, a survey investigating the impact of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for people with ME, CFS or PVFS diagnoses in the UK was made available online. It was intended to provide up-to-date data on the impact these therapies have had on people who have been offered or received

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GET and CBT are not safe for ME – summary of survey results

Listen to the recording:  #MEAction UK Lay Summary of the 2019 Forward ME Group CBT & GET Survey Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME

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Australian Government Announces $3M for ME/CFS Research

Australia’s Health Minister Greg Hunt has today announced $3M for research into ME/CFS. Minister Hunt notes that “funding will be provided through the National Health and Medical Research Council (NHMRC) to help researchers develop a better understanding of the cause and condition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Diagnosis of ME/CFS is difficult, with no diagnostic test and a diverse range of symptoms. Research will drive a better understanding of the condition along with its causes and the mechanisms that lead to its debilitating symptoms.”

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