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    Functional Neurological Disorders - discussion thread

    Trial By Error: Shaky Evidence for Signs of Functional Neurological Disorders http://www.virology.ws/2019/12/30/trial-by-error-shaky-evidence-for-signs-of-functional-neurological-disorders/ 30 December 2019 By David Tuller, DrPH One of my goals next year is to write more about so-called...
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    Eastern Daily Press: ME sufferer was told by doctors condition was 'in her head'

    Eastern Daily Press: ME sufferer was told by doctors condition was 'in her head' https://www.edp24.co.uk/news/health/emily-canwood-from-fulmodeston-on-suffering-from-me-1-6440557 A woman left bedbound with an incurable illness revealed her fight simply to be believed. Emily Canwood, 24...
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    Lancashire Telegraph: Realities of living with ME this Christmas

    Lancashire Telegraph: Realities of living with ME this Christmas https://www.lancashiretelegraph.co.uk/news/18126222.realities-living-christmas/ By Aban Quaynor Chief Reporter A MUM-of-two has revealed the realities of living with a misunderstood, debilitating illness this Christmas. Gemma...
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    Open Medicine Foundation (OMF) fundraising

    Merged thread Dr Ron Davis shares an update on research at the OMF-funded ME/CFS Collaborative Research Center at the Stanford Genome Technology Center. He shares holiday greetings and hope with the entire ME/CFS community.
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    Open Medicine Foundation (OMF) fundraising

    Merged thread https://www.omf.ngo/2019/12/13/2019-year-end-message-stanford/ An End of Year Message from Ronald W. Davis, PhD, and Janet L. Dafoe, PhD We have accomplished so much with the amazing donations generously given to OMF and we are grateful. We have collected huge amounts of data in...
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    The Grace Charity for M.E.: Letter from NHS Digital (Data Co-Ordination Board)

    A letter sent to The Grace Charity for M.E. (www.thegracecharityforme.org) from NHS Digital (Data Co-Ordination Board) confirms that the NHS still mandates ME as a neurological illness – see https://www.thegracecharityforme.org/wp-content/uploads/2019/11/Myalgic-Encephalomyelitis_letter.pdf
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    A Life Hidden - Blog posts by Naomi Whittingham

    Congratulations to Naomi – A Life Hidden – the First Year https://alifehidden.com/2019/11/25/first-year/ by Naomi Whittingham A Life Hidden is a year old this week. This milestone is an opportunity to look back on the year that has passed, and also to thank everyone who has supported my...
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    ME Association: “Get Well Soon” – Guest Blog by Louise Shepherd

    ME Association: “Get Well Soon” – Guest Blog by Louise Shepherd https://www.meassociation.org.uk/2019/11/get-well-soon-guest-blog-by-louise-shepherd-22-november-2019/ I was recently sorting through some of my belongs and came across my “Keepsake box.” As I dug my way through it, I found a...
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    Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), 2019, Polo et al.

    Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) https://www.tandfonline.com/doi/full/10.1080/21641846.2019.1692770 Olli Polo, Pia Pesonen & Essi Tuominen ABSTRACT Background: Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is...
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    ME Association: Speak Up for M.E. in the General Election: Contact Your Candidates!| 19 November 2019

    ME Association: Speak Up for M.E. in the General Election: Contact Your Candidates!| 19 November 2019 https://www.meassociation.org.uk/2019/11/speak-up-for-m-e-in-the-general-election-contact-your-candidates-19-november-2019/ Dr Charles Shepherd, Hon. Medical Adviser, ME Association. This...
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    DanvilleSanRamon.com : Tri-Valley Hero: Vidhima Shetty, sharing others' stories

    DanvilleSanRamon.com : Tri-Valley Hero: Vidhima Shetty, sharing others' stories https://www.danvillesanramon.com/news/2019/11/17/tri-valley-hero-vidhima-shetty-sharing-others-stories Teen author, journalist from San Ramon receives Rising Star award by Dolores Fox Ciardelli Vidhima Shetty...
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    Dialogues for a neglected illness - videos on experiences of people with ME (funded by Wellcome Foundation)

    Now mentioned on the ME Research UK website - ME Research UK: Dialogues for ME/CFS http://www.meresearch.org.uk/information/dialogues/ This is a collection of videos created by Natalie Boulton, funded by an award from the Wellcome Public Engagement Fund. The full series will cover different...
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    Naltrexone restores impaired transient receptor potential melastatin 3 ion channel function in NK cells from ME/CFS patients, Cabanas et al, 2019

    MEA Summary Review: Low Dose Naltrexone (LDN) in ME/CFS | 14 November 2019 https://www.meassociation.org.uk/2019/11/mea-summary-review-low-dose-naltrexone-ldn-in-me-cfs-14-november-2019/ Charlotte Stephens, Research Correspondent, ME Association. A recent publication by researchers from...
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    A Life Hidden - Blog posts by Naomi Whittingham

    Part 3 Beneath the Surface, Part 3 By Naomi Whittingham https://alifehidden.com/2019/10/28/beneath-surface-3/ The third and final part of a series analysing the British Association of CFS/ME (BACME) guidelines on severe ME. I have chosen to write extensively on this subject, as the...
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    Trial By Error: Where Is Bristol’s Review of Professor Crawley’s Ethics Missteps?

    Trial By Error: Where Is Bristol’s Review of Professor Crawley’s Ethics Missteps? http://www.virology.ws/2019/10/02/trial-by-error-where-is-bristols-review-of-professor-crawleys-ethics-missteps/ 2 October 2019 By David Tuller, DrPH I have repeatedly raised concerns about Professor Esther...
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    3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

    OMF Community Symposium on the Molecular Basis of ME/CFS 2019 The individual talks are now available on YouTube – https://www.youtube.com/playlist?list=PLl4AfLZNZEQPiRL9zpis8LtfaHBEMy4jS
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    A Life Hidden - Blog posts by Naomi Whittingham

    Part 2 A Life Hidden: Beneath the Surface, Part 2 By Naomi Whittingham https://alifehidden.com/2019/10/02/beneath-surface-2/ The second of a three part series analysing the British Association of CFS/ME (BACME) guidelines on severe ME. I have chosen to write extensively on this subject, as...
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    Dr Myhill’s complaint to GMC about PACE authors.

    Merged thread Dr Sarah Myhill: My Complaint to the GMC about the PACE authors https://www.drmyhill.co.uk/wiki/My_Complaint_to_the_GMC_about_the_PACE_authors 1 OCTOBER 2019 - UPDATE - ICO SLAPS DECISION NOTICE ON GMC! You can download the full Signed Decision Notice here - ICO Full Signed...
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    Dead but it won’t lie down: The myth that ME (Myalgic Encephalomyelitis) = MUS (Medically Unexplained Symptoms).

    Dead but it won’t lie down: The myth that ME (Myalgic Encephalomyelitis) = MUS (Medically Unexplained Symptoms). http://www.oneagleswings.me.uk/dead-but-it-wont-lie-down/ (I did not write this article, but the author (who wishes to remain anonymous) has given me permission to put it on my...
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    3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

    OMF: An Exciting Week for Advancing ME/CFS Research https://www.omf.ngo/2019/09/16/an-exciting-week-for-advancing-me-cfs-research/ Linda Tannenbaum I’m pleased to share with the OMF community that the OMF sponsored Stanford ME/CFS Working Group and Third Annual Community Symposium on the...
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