Author Archives: wames

Elements of suffering in ME/CFS… in the severely & very severely affected

Elements of suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: the experience of loss, grief, stigma, and trauma in the severely and very severely affected, by Patricia A Fennell, Nancy Dorr and Shane S George in Healthcare 2021, 9(5), 553; [doi.org/10.3390/healthcare9050553] 9 May … Continue reading

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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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Understanding the economic impact of ME/CFS in Ireland

Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study, by John Cullinan, Orla Ní Chomhraí, Tom Kindlon, Leeanne Black, Bláthín Casey in HRB Open Res 2020, 3:88 [doi.org/10.12688/hrbopenres.13181.1]   Article abstract: Background:  Myalgic encephalomyelitis/chronic fatigue … Continue reading

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If you are living with ME – #YouAreNotAlone #MillionsMissing

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Blue Sunday Tea Party 16 May 2021 – raise awareness & funds

Blue Sunday 2021 – the Tea Party for ME Anna Redshaw began her Blue Sunday Tea Party 9 years ago. The idea caught on and on Sunday 16th May 2021, people from all over the world will meet up online … Continue reading

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ME Awareness day 12th May 2021 – Post-viral illness is not new!

May 12th is International ME Awareness day   During 2020 and 2021 the world has been shocked, particularly in the West, by the indiscriminate damage that a virus can have.  Chronic post-viral illness has been catapulted into the spotlight. But … Continue reading

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Mass Observation – Record your ME / pandemic experience, May 12th

Wednesday 12th May 2021: Would you like to keep a one-day diary for Mass Observation?   On the 12th May 2021, the Mass Observation Archive will be repeating its annual call for day diaries, capturing the everyday lives of people … Continue reading

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Humility and acceptance: working within our limits with Long COVID & ME/CFS

Humility and acceptance: working within our limits with Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, by Simon Decary, Isabelle Gaboury, Sabrina Poirier, Christiane Garcia, Scott Simpson, Michelle Bull, Darren Brown, Frederique Daigle in Journal of Orthopaedic & Sports Physical Therapy Vol 51, … Continue reading

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From DNA to drug development. Five success stories show the potential of DecodeME

DecodeME Study blog: From DNA to drug development. Five success stories show the potential of DecodeME   How do you find treatments for a disease like ME/CFS, where nothing is known for sure about its causes? One way scientists can … Continue reading

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ME/CFS: whole genome sequencing uncovers a misclassified case of glycogen storage disease type 13 previously diagnosed as ME/CFS

ME/CFS: whole genome sequencing uncovers a misclassified case of glycogen storage disease type 13 previously diagnosed as ME/CFS, by Donna Brown, Camille Birch, Jarred Younger, Elizabeth Worthey in Molecular Genetics and Metabolism Vol 132, Supp 1, April 2021, Pages S194-S195 … Continue reading

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