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Latest News
- Diagnostic test research: Autoantibodies & receptors correlate with symptom severity, autonomic dysfunction & disability in ME/CFS
- House of Lords Q&A: NICE & ME/CFS
- Research: Neurochemical abnormalities in CFS
- Legal challenge to NICE ME/CFS Guideline delay
- NICE releases further details of ME/CFS roundtable meeting
Archives
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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Tagged carers, severe ME, Severe ME Artists Project, severe me day, The invisible, Underexposed
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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
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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Tagged extremely severe ME, Fennell Four-Phase Model, grief, Nancy Dorr, Patricia A Fennell, severe ME, Shane S George, stress, suicide, trauma, uncertainty
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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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Tagged extremely severe ME, severe ME, suicide, Whitney Dafoe
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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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Tagged housebound, Prof Julia Newton, severe ME, Tracy Collins, Victoria Strassheim
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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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Tagged aetiology, Caroline Kingdon, case study, diagnosis, Dr Charles Shepherd, Dr Nina Muirhead, home visits, management, severe ME
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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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Tagged disability aids, home adaptations, hospital admissions, Independant living, National Institute for Health and Care Excellence, NICE guideline ME/CFS, severe ME
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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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Tagged Anita Franco, Catherine Beaudin, Christian Godbout, Corinne Leveau, Dawei Li, Dr Alain Moreau, Emi Kanamaru, Evguenia Nepotchatykh, Iurie Carausus, Lynda Chalder, microRNAs, PEM, Post-exertional malaise, Renata Kosovskaia, Saadallah Bouhanik, severe ME, Shawn Lauzon, Viorica Lascau-Coman, Wesam Elremaly, Yaned Patricia Gaitan, Yanick Maillet
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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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Tagged children, National Institute for Health and Care Excellence, NICE guideline ME/CFS, paediatric ME, severe ME, young people
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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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Tagged CBF, cerebral blood flow, Dr Linda van Campen, Dr Peter Rowe, Fibromyalgia, Frans C Visser, head-up tilt test, OI, orthostatic intolerance, postural orthostatic tachycardia syndrome, POTS, severe ME
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