We have secured funding for a very large study to analyse DNA from the saliva of people with ME/CFS to see whether the disease is partly genetic and if so, help pinpoint what causes it. The study should help us understand the disease and ultimately find treatments. Press Release: £3.2m Read more…
(CNN)Shortly after 11 a.m. on December 16, 2019, Cindy Siegel Shepler drew her last breath in a spartan room in Basel, Switzerland. The 62-year-old American twisted a knob on her IV pole and soon fell asleep for the last time. I had stayed with her and her husband David in Read more…
Dialogues for a neglected illness – or Dialogues for ME/CFS is a new project being made with an award from the Wellcome Public Engagement Fund. More information here. The project will consist of a website with a collection of about a dozen new short videos, accompanied by links to existing educational and reference material. Read more…
A singer seriously ill with a severe form of ME has asked musicians and studio technicians to help finish her debut album. https://www.bbc.co.uk/news/uk-england-derbyshire-52647259
Last year on his birthday, we presented Alem Matthees with an award and framed certificate on behalf of the Australian ME/CFS community, and state and national ME/CFS organisations. Alem was being honoured for his extraordinary contribution in fighting for information that allowed the PACE trial to be debunked. https://may12th.org.au/australian-me-cfs-advocacy-award-honours-alem-matthees/?fbclid=IwAR0uixNdUotd37BCuEwIz9hpxW6K7QqQI0VgOKKZjlqzFBh2ruIb6V70mDU
More than 21,000 Scots suffer from ME which is also known as chronic fatigue syndrome Scottish ministers are being urged to withdraw a controversial treatment that is prescribed on the NHS to treat myalgic encephalomyelitis (ME) but is blamed for leaving many victims housebound or crippled. https://www.thetimes.co.uk/article/me-sufferers-demand-end-to-exercise-treatment-9ncc9nw6n
A. whereas the Committee on Petitions has received several petitions raising concerns over the absence of treatments and the current underfunding of biomedical research on myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) within the EU; https://www.europarl.europa.eu/meetdocs/2014_2019/plmrep/COMMITTEES/PETI/RE/2020/04-30/1200263EN.pdf
The Countess of Mar, Britain’s only female hereditary peer, is stepping down from the House of Lords after 45 years As the only female hereditary peer in the House of Lords, at first glance the grandly-titled Countess of Mar would strike many as the type to rail against reforms to Read more…
Press Releases PETI Today An estimate of 2 million Europeans affected by the disease EU research remains fragmented and lacks coordination ME/CFS is still poorly understood and consequently, underdiagnosed https://www.europarl.europa.eu/news/en/press-room/20200425IPR77906/underfunding-of-biomedical-research-into-myalgic-encephalomyelitisis-unjustified
Why is this important? The Government has chosen to ‘focus on new claimants’ by providing an extra £20 a week for people claiming Universal Credit. By doing this, they are discriminating against millions of disabled people on other out of work disability benefits. https://you.38degrees.org.uk/petitions/stop-leaving-disabled-people-behind?bucket&source=facebook-share-button&time=1587996856&utm_campaign&utm_source=facebook&share=8d39b44c-2153-4b83-a42c-7c2948eac0e9&fbclid=IwAR0QbP6PwyQSYPjLaAzw3YqpaRMBW5-VF_3Uou_PTn3nCSpykuwDqCVLGI8