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
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.
#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
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
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
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.”
The Workwell Foundation issued the press release below about its meta-analysis of 20 years of studies that shows “overwhelming evidence” of chronotropic incompetence in people with ME/CFS, which contributes to activity intolerance in people with myalgic encephalomyelitis (ME). A normal response to exercise is an increase in heart rate. Failure of the heart to keep pace with an
Overview The objective of this research study is to look in-depth at the clinical and biological characteristics of ME/CFS. Participants with ME/CFS are inpatients at the clinical center at NIH for approximately two weeks on their first visit and another two weeks if they return for the second round of the study. There will be
‘Meet the Scientists’ is a series of interviews with researchers working on ME and chronic fatigue syndrome. We ask them about their current research and get to meet the people working to improve our health. The series introduces early career researchers through to interviewing scientists and clinicians who have been working on the problems for decades.
April is going to be an incredibly exciting month for advocacy and for research into ME! The NIH is hosting a conference on ME in early April along with a Young Investigators Workshop specifically geared towards early-career investigators with interest in ME. Concurrently, there will be a Congressional lobbying push hosted by #MEAction and SMCI
