The difference you make..

 

Hi Miriam, There’s been lots going on at Action for M.E. this summer. You might have already seen the announcement of Dr David Strain as our new medical advisor, the launch of our petition calling for more research funding for M.E. and the exploration of a merger with the M.E. Trust. With so much going on, your support continues to be so important to us.

With huge thanks, Bella Whately Fundraising Manager

Have you heard that we’re exploring a merger with the M.E. Trust? On Tuesday 3 August our Board of Trustees approved a decision to explore a merger with the M.E. Trust, which has been providing clinical services and support for people with M.E., their families and carers for the last ten years. Follow this link to find out more.

Petition to demand more funding for M.E. Earlier this month we held a press briefing for journalists to highlight the issue of underfunding of M.E. and the impact that this will have on those diagnosed with M.E. following Long Covid. We demand equity for people with M.E. and are asking the UK Governments to commit the same level of research funding and recognition to M.E. as we have seen with Long Covid. If you agree that hundreds of thousands of children and adults with M.E. have been ignored for too long, please sign our Equity for M.E./CFS petition at https://www.surveymonkey.co.uk/r/Petition4ME Thank you if you have already signed the petition!

Our response to the NICE guideline delay We are hugely disappointed that the National Institute for Health and Care Excellence (NICE) guideline were unexpectedly delayed at the last minute. The new NICE guideline brings clinical practice up to date and removes support for therapies driven by outdated views regarding treatment for M.E. which are no longer supported by the science. Our Chief Executive, Sonya Chowdhury, Action for M.E., says: “We are in the dark about this. The NICE committee has worked hard to produce balanced guidelines which reflect science and best medical practise. Nobody should be able to undermine that.” Read our full response to the disappointing delay here.

Announcing our new Medical Advisor, Dr David Strain! We are excited to welcome Dr David Strain to the Action for M.E. team! He brings a wealth of expertise and has had close links to M.E. through being a consultant to the Devon M.E./CFS specialist service. Dr Strain is also leading the British Medical Association’s Covid-19 response team and has repeatedly drawn parallels between Long Covid and M.E., calling for research to benefit all post-viral illnesses. Dr Strain explained his focus by saying, “By working with Action for M.E. I will continue to address the stigma and misinformation that exists and offer advice and guidance to enhance their work.” You can listen to Dr Strain in our latest Learn about M.E. podcast or watch him discuss his work on BBC Horizon, available through BBC iPlayer.

The return of our long-awaited events! We have some incredible fundraising events to look forward to over the next few months. Our Walk with M.E. teams are coming to the end of their 100 day challenge soon and have raised an astonishing £3,594 so far! We also have some of our amazing fundraisers running the Great North Run on Sunday 12 September and others running the London Marathon on Sunday 3 October. Good luck to everyone involved!  A huge thank you to everyone who has participated in their own fundraising event or a challenge events. Here are examples of some of our amazing fundraisers, including Chris, Carl and Alex who completed their own Golf Marathon!

Join the network campaigning for change The Act4ME Network has now taken part in three collective actions. In June, people were asked to email or tweet a reporter at GB news, Michelle Dewsbury, who was asking for stories to cover. In July, we asked people to contact Jonathan Ashworth MP, who is also the current Shadow Secretary for Health and Social Care. More recently, for the August action, we asked people to sign this petition. Click here to sign up for these monthly action emails or let us know if you have an idea for the next action.   Thank you if you have already joined the Act4ME Network. Together we can raise awareness of M.E. and put pressure on decision makers to prioritise the condition for increased funding and better awareness and understanding.

Do you use these shopping platforms? Using EasyFundraising, Give as you Live and Amazon Smile are three easy ways to donate to Action for M.E., all at no cost to you! These platforms are great as they automatically donate to your chosen charity when you sign up and shop online. If this interests you, follow the links below to check out these platforms: AmazonSmile: https://smile.amazon.co.uk/ch/1036419-0 EasyFundraising: https://www.easyfundraising.org.uk/causes/actionforme Give as You Live: https://www.giveasyoulive.com/join/afme

The team are forever thankful for your continuous support and can’t wait to share with you all the amazing things we are able to do because of you.

Action for M.E. is a Registered UK charity in England and Wales: 1036419. Registered in Scotland: SC040452. The information you provide will be held securely in accordance with the General Data Protection Regulation 2018 and will only be used by Action for M.E. to supply the services which you have request