Tag Archives: severe ME

Make severe ME visible – Severe ME day, Sun 8 Aug 2021

Making severe ME visible   An estimated 25% of people with ME are so ill they rarely leave their homes or beds. They feel invisible and ignored. On Severe ME day each year, 8th August, we make a special effort … Continue reading

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Introducing WAMES volunteer with severe ME: Michelle

Introducing WAMES trustee & social media volunteer: Michelle Penny   Hello, my name is Michelle. I was diagnosed with ME at the age of 10, although it is thought I may have had the condition for about 2 years before … Continue reading

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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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‘Having severe ME/CFS is so close to being dead’: extremely severe ME/CFS – a personal account’

Extremely severe ME/CFS — A personal account, by Whitney Dafoe in Healthcare Vol 9, #5, p 504, April 27, 2021 [doi.org/10.3390/healthcare9050504]   Article abstract: A personal account from an Extremely Severe Bedridden ME/CFS patient about the experience of living with extremely … Continue reading

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Experiences of living with severe CFS/ME

Experiences of living with severe Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, by  Victoria Strassheim, Julia L Newton and Tracy Collins in Healthcare 2021, 9(2), 168 [doi.org/10.3390/healthcare9020168] (This article belongs to the Special Issue ME/CFS – the Severely and Very Severely Affected)   Research … Continue reading

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Demystifying ME/CFS: talk by Dr Shepherd, Dr Muirhead & Caroline Kingdon RN

UK Cambridge University GP Society: Demystifying ME/CFS   On 14 January an online event about ME/CFS was held by the CUGPS for healthcare professionals, students and patients. Speakers: Dr Charles Shepherd (starts 3 mins) – Dispelling common misconceptions about ME/CFS … Continue reading

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NICE ME/CFS draft guideline – make adjustments to help patients access services

NICE ME/CFS draft guideline: provide help to access services   The draft NICE guideline is open for consultation until December 22nd 2020. Contact the helpline or use the contact form on this website with your comments for inclusion in the … Continue reading

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The profile of circulating microRNAs in ME & their relation to symptom severity, & disease pathophysiology

Profile of circulating microRNAs in myalgic encephalomyelitis and their relation to symptom severity, and disease pathophysiology, by Evguenia Nepotchatykh, Wesam Elremaly, Iurie Caraus, Christian Godbout, Corinne Leveau, Lynda Chalder, Catherine Beaudin, Emi Kanamaru, Renata Kosovskaia, Shawn Lauzon, Yanick Maillet, Anita Franco, … Continue reading

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NICE draft ME/CFS guideline proposes tailored, individualised approach to care in partnership with patient

NICE says there is no ‘one size fits all’ approach to managing ME/CFS symptoms. It stresses the need for a tailored, individualised approach to care that allows joint decision making and informed choice.   The draft NICE guideline is open … Continue reading

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Reductions in cerebral blood flow can be provoked by sitting in severe ME/CFS patients

Reductions in cerebral blood flow can be provoked by sitting in severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients, by C (Linda) MC van Campen, Peter C Rowe and Frans C Visser in Healthcare 2020, 8(4), 394 [doi.org/10.3390/healthcare8040394]   Research abstract: Introduction: In … Continue reading

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