Tag: research

Join over 1,000 people and vote for your ME/CFS research priorities

Over 1,000 people have now voted for their ME/CFS research priorities. People with ME/CFS, carers and clinicians in the UK are all asked to take part. The ME/CFS Priority Setting Partnership is particularly looking for more people from ethnic minorities, carers and health care professionals to take part. So far: Just 4% of respondents are

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Choose your top ten ME/CFS research priorities – UK survey launched

Take the survey The ME/CFS Priority Setting Partnership (PSP) is giving you the opportunity to define your top ten priorities for future ME/CFS research. In partnership with the James Lind Alliance, the ME/CFS Priority Setting Partnership is launching their second survey today. The research questions in this survey are based on over 5300 ideas submitted

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Stanford study enrolling now

Who: Ron Davis’s lab at Stanford University is conducting a functional microbiome study in collaboration with Harvard University and Vassar College. They are looking for severely Ill, primarily bed-bound patients within the United States to participate. What: Participants will be asked to provide a one-time fecal swab which can be collected at home and sent

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Register for the IACFS/ME Conference

Join IACFS/ME, the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and people with ME, supporters, clinicians, and researchers for the 2021 IACFS/ME Virtual Conference, held August 19-21, 2021. Attendees will have access to three days of virtual workshops, lectures, and updates on recent developments in ME/CFS research.  Some of the conference events include: “Orthostatic Intolerance

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Cochrane redux

Get caught up!  Start with Cochrane Analysis: What’s Here, What’s Missing, Conclusions What has gone on before Cochrane Reviews are well-known systematic reviews of studies in healthcare, and are internationally recognized — enough to be considered the last word in healthcare as far as some medical publications are concerned.  In 2019, Larun et al. wrote

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£3.2million granted for largest ME/CFS DNA study ever

Funding for the world’s largest genetic study into myalgic encephalomyelitis (ME), led by a partnership of patients and scientists, has been announced. Thanks to £3.2 million funding, awarded jointly by the Medical Research Council and National Institute for Health Research, work can begin on DecodeME, the ME/CFS DNA study that hopes to reveal the tiny differences in a person’s DNA that may affect their risk of developing ME/CFS, and the underlying causes of the condition.

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The UK ME/CFS Biobank: a rich resource of samples and data

It is a strange time to be writing about the work of the UK ME/CFS Biobank (UKMEB); as I write, our office has been closed for over two months and clinical visits have been paused indefinitely; samples cannot currently be distributed. COVID-19 has created many challenges to our work and the research of many others,

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Washington Post Editorial Says Some COVID-19 Patients Will Develop ME

The Washington Post published an editorial last Saturday about how researchers are warning that COVID-19 may lead to long-term, debilitating illnesses, like myalgic encephalomyelitis (ME), in some patients. The editorial was written by former Washington Post reporter, Brian Vastag, and #MEAction co-founder, Beth Mazur, both of whom have ME. Many people infected with COVID-19 are

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Citizen science highlights non-recovery in COVID-19 patients

Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. The Body Politic COVID-19 Support Group surveyed over 600 participants who had experienced/were experiencing COVID-19 symptoms for at least two weeks, revealing insights

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