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The difference you made this M.E. Awareness Month

June 02, 2021

“With the restrictions of having M.E. it feels like I have been in lockdown for over 30 years. Lockdown will continue for people with M.E./CFS and other chronic illnesses.”

Mary, pictured, is one of more than 80 people with M.E. who shared their experience for our Years in Lockdown campaign for May’s M.E. Awareness Month, and we are hugely grateful to all of them.

We wanted to show that restrictions aren’t ending for people with chronic illness, and we asked you to join us in taking action. Kelly, who has lived with chronic illness for seven years, told us:

“This campaign and Action for M.E.’s work is so important. I advocate for M.E. and my other chronic illnesses on my Instagram page. I have had quite a few people say that me sharing my experiences has really helped them and that means the world. M.E. deserves and needs research and funding. M.E. has taken so much from me, but I have learnt a lot and grown as a person since I've been ill. I never realised how many challenges disabled people face and that needs to change.”

Thanks to your support, more than 1,250 health professionals have undertaken Dr Nina Muirhead’s learning module to better support their patients with M.E. - with a 321% increase in downloads during May - and our accompanying Learn about M.E. podcast series has been downloaded more than 300 times. Dr Shaun Peter Qureshi commented:

"This module was concise, informative, and provided evidence-based explanations. It has greatly helped my understanding of diagnosis and management of M.E./CFS, and the guidance on post exertional malaise and chronic post-viral fatigue is likely also to be very applicable to patients with Long Covid."

Thanks to your support, M.E. Awareness Day saw more than 450 people register, in just 24 hours, to potentially take part in DecodeME. This genetic study of M.E./CFS, the largest in the world, is co-led by Action for M.E. alongside expert scientists and people with M.E., and begins recruiting participants in September.

Hundreds of people with M.E., carers and clinicians shared their views with the ME/CFS Priority Setting Partnership (PSP), which aims to identify the top research priorities to influence research funding in the future - there's still time to get involved.

In an article for Holyrood magazine (regularly read by four out of five MSPs) our Chief Executive, Sonya Chowdhury, highlighted the lack of understanding that has led to years in lockdown for people with M.E. preventing them accessing the services and support they need – and how we must ensure that care, support and research for Long Covid benefits people with M.E. too.

We have more articles lined up, including for a specialist healthcare journal, later in the summer, and next month will see people with M.E., carers and supporters in our Act4ME Network take the first in a series of coordinated campaign activities. You can sign up to join them here.

Thanks to your comments, likes and shares on social media, more than 209,300 people saw our M.E. Awareness Month content on Facebook alone, while supporters on Twitter shared and commented on tweets from @actionforme and our CEO @sonyachowdhury nearly 10,000 times, getting our campaign out to a wider audience.

We received double the number of donations (compared to usual months) during May, and are hugely grateful to everyone who donates and fundraises to help us reach more people with M.E. Each year during M.E. Awareness Month, Anna Redshaw hosts her Blue Sunday Tea Party to raise awareness and funds, this year raising an astounding £18,500 for 12 M.E. charities, including Action for M.E. To all who took part, thank you.

But we know there is so much more to do to address the ignorance, injustice and neglect faced by people with M.E.

As the world opens back up, we are putting plans in place to improve healthcare and information for people with M.E., and ensuring the experiences and voices of people with M.E. are heard by policy and decision-makers in health, social care, education, welfare, employment and research.

You can find out more at our Q&A webinar on Wednesday 9 June, 4pm to 4.45pm. Our CEO Sonya Chowdhury will share updates on our current and future work, with questions invited in advance. The webinar will be recorded and uploaded to our YouTube channel for those unable to watch on the day. Please register online with your name, email address and any questions you would like Sonya to answer, and you will be sent joining instructions. You can also submit questions by email if you prefer. All are welcome to attend.