A wide range of activities are taking place for International ME Awareness month, which takes place this year in May.
Action for ME (http://www.afme.org.uk/) is offering keen jumpers the opportunity to participate in a 10,000-foot freefall sky-dive, harnessed to a professional parachute instructor. There are over 20 locations across the country. Sky-divers are asked to raise at least £395 from their friends and family in sponsorship.
Those who prefer a more “wet and wild” experience can book a white water rafting adventure. No previous experience is necessary, but teams of six-eight people are asked to raise a minimum sponsorship of £1,000.
In addition to these activities for individuals, the organisation is launching a new booklet for employers on ME in the workplace, which will later be followed up with a booklet for people with ME on managing the condition at work. It is also launching an important new survey on the experience of people with ME of the NHS ME services; and distributing thousands of awareness-raising leaflets and posters to public libraries and local press.
Invest in ME is promoting its ‘Burst our Bubble’ appeal (http://bit.ly/gQmguY). “People who suffer from Myalgic Encephalomyelitis (ME) are forced to live in a bubble – isolated from society,” the campaign says. There is much misinformation about the condition; medical ignorance; misdiagnosis; discrimination; no funding of biomedical research; government apathy and isolation.
Supporters are being asked to download and distribute awareness-raising posters, to buy a copy of “Lost voices”, a book describing ME, its effects on patients and families and the history of the disease, and to encourage their GPs to participate in an upcoming conference in Westminster on ME and the case for clinical trials.
MEFreeForAll.org is asking ME sufferers, their carers, friends and family to express their experience in just one sentence. “‘A sentence of M.E.’ has a deliberately obvious double meaning: The horrible experience of this largely invisible and unpredictable disabling illness that seems to some like a prison sentence is, literally, just that for the most severely affected, who are housebound or bedridden.” The results are being used on the website, Facebook and Twitter.
Myalgic Encephalomyelitis – also known as chronic fatigue syndrome – is characterised by severe and persistent fatigue for a minimum of six months, which is not due to ongoing exertion, not substantially relieved by rest, and not caused by other medical conditions. It affects around 250,000 people in Britain.