What is Blue Sunday? Why a tea party?
Now an international event, the Tea Party for M.E. began in 2013 and has since raised over £140,000 for ME/CFS charities and research worldwide.
What started as a simple idea by a single M.E. sufferer, has grown into a worldwide awareness day and celebration, while also raising much needed funds for one of the most underfunded diseases (compared to disease burden).
“The Blue Sunday Tea Party For M.E. came about after I was too unwell to celebrate my birthday in November 2012. As I was unable to mark the occasion in ways I had before, I asked my family and friends to join me for a virtual party, posting photos and videos of themselves raising a mug of tea and enjoying a slice of cake. It felt so wonderful to feel connected with my loved ones when I was unable to leave the house or have any visitors.”
- Anna Redshaw, founder of The Tea Party for ME/Blue Sunday
It is a way to bring people together, while fundraising for, and breaking down some of the stigma of ME/CFS, while also lessening some of the isolation of such a debilitating and lonely illness.
The nature of the event means its accessible to all, whether you’re able to have an in-person celebration, or limited to a slice of cake in bed. There are often virtual events that can be joined from afar, with people dressing up in blue clothes (or pyjamas!) to get involved.
But why a Tea Party?
Who doesn’t love tea and cake?
So many fundraisers are inaccessible to those with severe/prolonged illness. You won’t see us running marathons, or completing 10,000 steps a day - but we can enjoy cake!
Not only that, it is a fantastic way for everyone to get involved - sufferers and their supporters, as well as those without a first hand experience of ME.
The Tea Party is an event that can be customised for everyone, while allowing our stories to be heard in a way that’s otherwise often overlooked and ignored.
Why is it called Blue Sunday?
Blue Sunday is the first Sunday following World ME Day (May 12th, the birthday of Florence Nightingale who was bedridden for much of her later life by an illness later attributed to M.E).
It, along with the Tea Party for ME, is a dedicated day for the M.E. community and their allies to come together as a community to fundraise for M.E. and raise awareness, while also providing a sense of community and “together-ness”, especially for those that are housebound or bed bound.
What is ME/CFS?
ME/CFS, also known as Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome, is a complex, multi-system illness, that severely limits a persons day-to-day functioning and capabilities.
Its hallmark symptom is profound fatigue (which is not the same as tiredness!) which does not improve with rest, and is exacerbated to an extreme degree by physical, mental or emotional exertion (i.e. the “payback” does not equal the effort taken, and can require days, weeks or even months to recover from). This worsening of symptoms after exertion is called Post Exertion Malaise (PEM).
It is estimated that there are at least 25,000 sufferers in NZ, which is equivalent to 1 in 250 adults and 1 in 134 youth. ME/CFS is thought to afflict around 150,000 in the UK, and over one million in the US. The economic cost (as at 2017) to each family with a sufferer has been estimated to be in the region of NZ$35-45,000 per year.
ME/CFS effects people of all ages, ethnicity, and socio-economic groups, and there are currently no specific medical treatments for ME/CFS.
Symptom severity ranges from ‘mild’ (just able to manage work but at the expense of other areas of life), to ‘very severe’ (bed-bound, tube-fed, paralysed, without speech).
The severity of ME/CFS can be hard to accurately portray, as even a ‘mild’ sufferer will likely have experienced a loss of at least 50% of normal function. Someone who can work (usually part time or from home), will often sacrifice hobbies or socialising, in order to have enough energy to continue earning an income, while someone at the severe end of the scale will sacrifice bathing or talking on the phone, in order to have enough energy to sit up or digest food.
These more severe sufferers are known as the “millions missing”, as they have largely disappeared from peoples lives due to their extreme illness.
(From ANZMES and CCIS)