Tag Archives: MEAction

The Chronic Illness Survey Adventure – an international study of symptoms

The Chronic Illness Survey Adventure What is it?  An international survey-based study to probe more deeply into ME/CFS, long COVID, POTS, hEDS and MCAS – ‘Symptom Cluster Characterization in Complex Chronic Disease’. Who is behind it? It is a partnership … Continue reading

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Long Covid: overlap emerges with ME – including debate over treatment

Guardian article: Long Covid: overlap emerges with ME – including debate over treatment by Linda Geddes, Science correspondent, Thu 19 Nov 2020   This article features people with long Covid, and looks at the similarities in symptoms of ME and … Continue reading

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Video: I got a virus, I didn’t die, but I never recovered

ME Awareness Week:       I got a virus, I didn’t die, but I never recovered     #MEAction network video, May 2020 A short film by people with ME and experts, warning of the long term consequences that viruses can … Continue reading

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EU parliament ME petition response: ‘we do not fund specific diseases’

#MEAction blog post, 3 Oct 2019: ME activist testifies before EU parliament Evelien Van Den Brink spoke powerfully and brilliantly to the Committee on Petitions in the European Parliament from her stretcher. Evelien laid out both an emotional and scientific … Continue reading

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The UK debate on ME has been granted – 24 January 2019

#MEAction blog post, 17 January 2019: Take Action Now! The UK debate on ME has been granted We are delighted that Carol Monaghan MP has managed to secure a debate in Parliament on Thursday afternoon, 24th January. This debate has … Continue reading

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Westminster Hall debate could be a ‘turning of the tide’ for ME

#MEAction blog post, 21 June 2018: Westminster Hall debate could be a ‘turning of the tide’ for ME Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for … Continue reading

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Dr VanElzakker’s ME research using PET, MRI and Tesla-7 scans

MEAction blog post, by Jaime S, 12Dec 2016: Dr VanElzakker: two new ME/CFS studies at Harvard #MEAction recently interviewed Dr. Michael VanElzakker regarding two, new studies on ME/CFS. The first aims to discover evidence of increased activity where the sensory … Continue reading

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Canada: officials turn down grant application because CFS “isn’t real”

MEAction blog post, by Jaime S, 26 August 2016: Canada: officials turn down grant app because CFS “isn’t real” For many months the Canadian Institutes of Health Research, the Canadian equivalent to the NIH, has advised that: “The IMHA [the Institute … Continue reading

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The UK ME/CFS Biobank paves the way for bigger & better research

MEAction blog post, by Simon McGrath, 11 August 2016: The UK ME/CFS biobank paves the way for bigger and better research Simon McGrath reports that the UK ME/CFS Biobank is open for business, with blood samples available from 300 patients, … Continue reading

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Rehmeyer makes statisticians’ ‘jaws drop’ over PACE

MEAction blog post by Alex Anderssen, 8 August 2016: Rehmeyer makes statisticians’ ‘jaws drop’ over PACE Science writer Julie Rehmeyer presented a critique of the PACE trial to North America’s largest gathering of statisticians in Chicago earlier this week. Her talk was titled, “Bad … Continue reading

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