2018

This is part one of my interview with The Canary about my song and the #MillionsMissing campaign. Part two will be published tomorrow: https://www.thecanary.co/feature/2018/05/12/bob-dylans-blowin-in-the-wind-has-been-re-imagined-for-the-millions-missing-part-one/ Edit: And here is part two...

Thought it would be good to have a thread to help people follow what's happening today, worldwide. If you go here and click 'Latest' (just below the blue #MillionsMissing bar), there's tons of tweets: https://twitter.com/search?q=#millionsmissing&lang=en Anybody got links to video coverage...

Perhaps this article demonstrates the value of @dave30th 's recent awareness-raising trip in Australia. To the #MillionsMissing with ME/CFS, something remarkable is happening...

http://www.virology.ws/2018/05/11/trial-by-error-may-12th-international-me-awareness-day/

https://www.bacme.info/patient-support-groups See link at the bottom of the page, "Message from the Chair on ME Awareness Month 2018" Dear Members, The merry month of MAY is not such a merry month for all of us, especially those who are ill; it is however a hardworking month for ME Awareness...

Another infection that leads to long-term symptoms including fatigue. I hope they follow-up patients again at a later stage. Free full text: https://link.springer.com/article/10.1007/s10096-018-3268-9 European Journal of Clinical Microbiology & Infectious Diseases pp 1–8| Cite as Long-term...

Also mentions her EDM: https://www.thecanary.co/exclusive/2018/05/10/an-mp-is-calling-for-a-debate-into-one-of-the-biggest-medical-scandals-of-the-21st-century/

https://www.huffingtonpost.co.uk/entry/because-of-me-i-can-only-imagine-being-the-mum-that-others-get-to-be_uk_5af2f208e4b00a3224ef5ca9

‘ME Awareness Week 2018’ New Early Day Motion Launched by Carol Monaghan MP | 09 May 2018 http://www.meassociation.org.uk/2018/05/me-awareness-week-2018-new-early-day-motion-launched-by-carol-monaghan-mp-09-may-2018/ An early day motion has been launched by Carol Monaghan MP, and she needs...

The Birmingham Mail is covering ME Awareness week with this story of a sufferer https://www.birminghammail.co.uk/news/health/illness-sucking-life-out-millions-14611319

http://jnnp.bmj.com/content/early/2018/05/06/jnnp-2017-317823 I'm not sure if this is the 'biomedical research' MRC claimed to be funding: http://gtr.ukri.org/projects?ref=MR/M02363X/1 They're similar but not identical. Perhaps an early spin-off? They like to make a meal from bad research...

Chronic fatigue syndrome treatment 'should be withdrawn' http://www.bbc.co.uk/news/newsbeat-44004882# A common treatment for chronic fatigue syndrome should be scrapped immediately, according to one of the UK's leading experts in the illness. Dr Charles Shepherd says graded exercise therapy...

http://www.virology.ws/2018/05/07/trial-by-error-my-visits-with-alem-matthees/ So terrible Alem had to pay such a price. Thanks @dave30th for visiting him.

Now Is the Time for PM Trudeau to Wake up to This National Disgrace! We Need the Voice of All to Help Amplify This Message We need this video to be seen and shared widely by those with ME & those without. Tag Canadian media and reporters on social media. Post to their pages. Send a link via...

The new #MillionsMissing campaign video 2018 was published today.

ME Awareness Week: ‘Missing behind closed curtains for 12 years’ – Woman describes living with M.E. http://www.meassociation.org.uk/2018/05/me-awareness-week-missing-behind-closed-curtains-for-12-years-woman-describes-living-with-m-e-07-may-2018/ Geraldine Scott, Eastern Daily Press, 6th May...

I don't think there is an existing thread for this yet? There are various posts about it in other threads but thought it might be useful to have its own thread. http://www.bbc.co.uk/mediacentre/proginfo/2018/19/me-and-me Now available to view at...

https://www.ncbi.nlm.nih.gov/pubmed/29100842 (paywalled) 2018 Jan;3(1):17-24. doi: 10.1016/S2468-1253(17)30338-2. Epub 2017 Nov 1. Faecal microbiota transplantation versus placebo for moderate-to-severe irritable bowel syndrome: a double-blind, randomised, placebo-controlled, parallel-group...

Exploring the Diagnostic Potential of Immune Biomarker Co-expression in Gulf War Illness Link to paper here * Patients with ME are control in this study Authors: Gordon Broderick, Mary Ann Fletcher, Michael Gallagher, Zachary Barnes, Suzanne D. Vernon, Nancy G. Klimas Abstract Complex...

A Q-and-A with Leonard Jason, on Case Definition A Brief Update: Berkeley’s crowdfunding period closed on April 30th–Monday night. I ended the campaign with $87,580. After Berkeley’s 7.5% in fees, the funds will cover my salary/benefit from July 1, 2018 to June 30, 2019, and some travel costs...