Tag Archives: severe ME

Severe ME: complex, unpredictable symptoms

Stonebird – the lived experience of severe ME

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The frail teenager set to spend all of her summer holidays in her bedroom

Wales online blog post: The frail teenager set to spend all of her summer holidays in her bedroom, by Mark Smith, 6 August 2019 Lola Brandrick, 13, from Swansea, is crippled by pain and is constantly exhausted While all her … Continue reading

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Cardiff woman with ME is fundraising for private brain photobiomodulation therapy

Fundraising for brain photobiomodulation therapy Jonathan Vaughan has despaired of getting help from his local health service, who are unwilling to even supply home visits in Cardiff for his seriously ill fiancée, and has set up a fund raising campaign … Continue reading

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Evidence of clinical pathology abnormalities in people with ME/CFS…

Evidence of clinical pathology abnormalities in people with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) from an analytic cross-sectional study, by Luis Nacul, Barbara de Barros, Caroline C Kingdon, Jacqueline M Cliff, Taane G Clark, Kathleen Mudie, Hazel M Dockrell, Eliana … Continue reading

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Defining the prevalence & symptom burden of those with self-reported severe CFS/ME

Defining the prevalence and symptom burden of those with self-reported severe chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): A two-phase community pilot study in the North East of England, by Victoria Jane Strassheim,  Madison Sunnquist, Leonard A Jason, Julia L Newton in BMJ Open Vol 19, #8, p e020775 [Published: … Continue reading

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August 8th 2018: Understanding & Remembrance Day for Severe ME

August 8th, 2018: Understanding and Remembrance Day for Severe ME, by Jody Smith in Phoenix Rising blog, 4 Aug 2018 Can you read these words I’ve written on this page? Good. Then you know that I am NOT an example … Continue reading

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‘A Girl Behind Dark Glasses’ book by Jessica Taylor-Bearman

‘A Girl Behind Dark Glasses’ book by Jessica Taylor-Bearman Book Description: From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M.E Monster. The severest form of a neuro … Continue reading

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Improvement of severe ME/CFS symptoms following surgical treatment of cervical spinal stenosis

Article abstract: Improvement of severe myalgic encephalomyelitis/chronic fatigue syndrome symptoms following surgical treatment of cervical spinal stenosis, by Peter C Rowe, Colleen L Marden, Scott Heinlein, Charles C Edwards II in J Transl Med 2018 16: 21 [Published online 02 February 2018] … Continue reading

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Severe ME remembrance day, 8 August 2017

Stonebird: the experience of severe ME At the Stonebird website you can find resources to help you understand the experience of severe ME and how to care for people with it. The Stonebird represents the idea that you don’t have to … Continue reading

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What is known about severe & very severe CFS? A scoping review

Review abstract: What is known about severe and very severe chronic fatigue syndrome? A scoping review, by Victoria Strassheim, Rebecca Lambson, Katie L. Hackett, Julia L. Newton in Fatigue: Biomedicine, Health & Behavior [Preprint June 19, 2017] Background: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) affects … Continue reading

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