A petition for more biomedical research funding for ME/CFS that was started in January is only 2,000 signatures short of the 10,000 needed to force the UK government to issue a response. The signatures must be gathered by 13 July.
The petition is on the UK Government and Parliament Petitions site, where any of the country’s citizens can start a petition with a view to getting the government’s attention. Ten thousand signatures guarantees a response; a hundred thousand offers the chance of a debate in Parliament. Only UK citizens or residents may sign.
The petition, started by Simone de Monerri, reads: “ME/CFS is a debilitating autoimmune disease currently affecting 250,000 people in the UK. Many sufferers are unable to work or care for themselves, and 25% of ME patients are bedbound. Most ME sufferers are on ESA or disability benefits, causing a significant economic burden.
“No universally effective treatment exists for ME. Current NHS treatments for the illness are based on the controversial PACE trial, and have been found ineffective or even harmful.
“Good quality research into the root cause of the illness is needed. The current annual budget for biomedical research works at roughly £1 per patient per year. We want the budget for research to be dramatically increased. We also ask for the formation of a work group focussing on the issues surrounding this disease.”
The petition is by far the most successful so far out of many ME/CFS petitions in the UK over the years, and reflects a growing tendency for the ME/CFS community to be able to mobilise more supporters via online networks, including #MEAction.
De Monerri, writing on #MEAction at the beginning of the year, called on “all British ME sufferers and allies” and said, “Inspired by our American friends and the progress that has been made over in the States with government funding and new research projects, we think it’s time for patients to put the pressure on the UK parliament.”
She added, “We think that with over 250,000 diagnosed M.E. sufferers and many more undiagnosed cases, as well as our families, friends, and M.E. allies, we can hit the 10,000 signature requirement for the government to respond to this petition. Let’s do this!”
ME/CFS funding in the UK is notoriously low: by 2014, only £2 million had been spent on the disease in total over 25 years.
The UK CFS/ME Research Collaborative was set up in 2013 to try to increase research funding and is developing plans for the world’s biggest biomedical ME/CFS study. Science blogger Simon McGrath has estimated the cost of the study at over £5 million.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the