Our Group Lunches and Afternoon Café Meetings are being cancelled for the time being, due to Coronavirus (covid-19).
This means that unfortunately our Awareness Week Afternoon Café Meeting planned for Thursday 14 May will not be happening. Also, cancelled is our Group Lunch the following week on Tuesday 19th.
Please watch our meetings page for confirmation when the lunches and afternoon café meetings will resume.
• Virtual #MillionsMissing on Tuesday, 12 May
Become involved - Check the #MillionsMissing website, facebook and twitter for full information.
Join #MillionsMissing for a full day of programming beginning in the UK! This event will stream on Facebook Live. Check the schedule for the virtual calls, performances, and activities you can participate in.
On the first day of Awareness Month, the ME Association (MEA) gave us
• 'ME Awareness: What you need to know about M.E.'
This article by Dr Charles Shepherd, Hon Medical Adviser of the MEA, included a 4 page leaflet -M.E. Factsheet available to download. The leaflet provides information to help in the understanding of M.E, its symptoms, treatments and the current research situation.
Plus also, the MEA Press Release - Brits with devastating illness speak out about years lost in lockdown.
HUNDREDS of thousands of disabled Brits are no strangers to the isolation being forced on the population by coronavirus - and this month they are sharing their stories of years lost behind closed curtains.
Sufferers of the cruel, unrelenting disease M.E. are bravely speaking out as society also learns what it can feel like to be excluded.
Some 265,000 people in the UK have (myalgic encephalomyelitis - also sometimes called chronic fatigue syndrome), including children and teenagers.
More people share their experiences. See the MEA website for more stories each day during Awareness Month - For ME Awareness Month in May, campaigning charity The ME Association is sharing the stories of real people whose lives have been effectively quarantined.
• Action for ME are asking for your stories
M.E. Awareness Month is almost upon us, with M.E. Awareness Day on Tuesday 12 May - and it's going to be an M.E. Awareness Month quite unlike any other. While the world has changed in countless ways, daily life for many people with M.E. remains the same, being reluctant experts in self-isolation. Whatever your experience, your story matters - and we want to help you bring it to the wider world this M.E. Awareness Month.
During ME Awareness Week, ME Research UK (MERUK) normally encourages supporters to hold a fundraising and awareness raising Tea for ME event. Due shielding and social distancing requirement this will not be possible in May 2020.
Instead, (MERUK) wish to encourage supporters to have a ‘Tea with me’. It is not a fundraiser, merely an encouragement on 12th May (International ME Awareness Day) to reach out to those whom we know are affected by ME, their family and their carers and to have a virtual cuppa together - a brew for ME rather than turning blue for ME .
ME advocate and parliamentary champion, the Countess of Mar, retires from The House of Lords
Also, near the beginning of Awareness Month, the ME Association (MEA), Action for ME (AfME), ME Research UK (MERUK), announced that the Countess of Mar, retired from the House of Lords on 1st May. The MEA, AfME and MERUK articles all give references to an article in the Telegraph.
• MERUK - From 1st May 2020, when the Countess of Mar retires officially from the House of Lords after almost 45 years’ service, the ME community will be losing a champion of the first rank and a redoubtable campaigner for acceptance of the illness, for research and for the proper treatment from government and the NHS of those affected by ME.
MEA - The Countess of Mar has taken on many roles in both a personal and parliamentary capacity to help people with M.E.
Her chairmanship of the Forward-ME Group, her constant willingness to be involved with promoting biomedical research, improving medical education, asking parliamentary questions and securing the PACE trial debate, and helping with difficult individual cases. Above all just being there to give sage advice when needed. As Margaret said in her letter, she is still going to continue to be involved with the Forward ME Group. So, we are not losing her completely and she will also continue as a Patron of the ME Association.
AfME - Margaret, the 31st Countess of Mar, joined the House of Lords in 1975. She has been a staunch advocate for people with M.E., raising awareness and highlighting the lack of funding for biomedical research. In Parliamentary debates and through the use of written questions, Lady Mar has worked ceaselessly to push M.E. up the agenda, highlighting injustices faced by those living with the condition. She has undertaken much of this through her founding and chairing Forward-ME, the collaborative of UK charities and voluntary organisations of which Action for M.E. is a committed and active member.
• ME Awareness Day - The Birthday of Florence Nightingale
M.E. Awareness Week was established by patient advocates and is focused on May 12th, the birthday of Florence Nightingale, who was believed to have suffered with M.E.
Take care, and stay safe everyone.