Sequence ME and Long Covid beginning.

 

As a valued supporter of our work, we are delighted to share the exciting news that we have secured funding for phase 1 of Sequence ME & Long Covid - the world’s largest long-read whole-genome study of any disease. The study will analyse the entire genetic code of 9,000 people with ME and 9,000 people with Long Covid. The initiative is designed to explore the causes of Myalgic Encephalomyelitis (ME) and Long Covid using large-scale, long-read whole-genome sequencing. Building directly on the success of the DecodeME study, this project aims to unlock deeper genetic insights that could accelerate the development of diagnostics and future life-changing treatments.  Find out more about Sequence ME & Long Covid The Schmidt Initiative for Long Covid and CODA (Complex Disorders Alliance) have provided $200,000 and $50,000 respectively towards the cost of the project’s first phase.  In this first phase we will: establish the project’s Management Group, Scientific Advisory Board, and build on the existing involvement of people with lived experience who have driven this study from the start develop the research criteria for Long Covid collect expressions of interest from 15,000 people with Long Covid We are delighted to be able to begin this ground-breaking research, however the total cost of the initiative is £20million, with phase one lasting two years and costing £388,138. The funding provided by project partners CODA and The Schmidt Initiative for Long Covid will enable us to recruit a full-time Partnerships and Business Development Manager to help drive this work, including seeking further funding and partnerships for the study. Once further funding is secured, we will immediately move into sample collection and analysis – aiming to sequence 9,000 Long Covid samples, as well as the 9,000 samples already collected through DecodeME.  We are now in a position to take donations towards the project from those who are able to. If you would like to support the project, you can make a donation here. We will share future updates on the study’s progress with you as soon as possible. Our ability to develop research partnerships such as these is only possible due to the support of people like you. Thank you for helping us create real change for people with ME and Long Covid, now and in the future. Warmest wishes, The Action for ME Team P.S. We still have some seats available at our Breakthrough ME fundraising dinner in London on Thursday 15th October 2026. For more information or to book your seat, please contact breakthrough@actionforme.org.uk

Donate to Sequence ME & Long Covid Miriam miriampotter40@gmail.com

Frozen are better than fresh!

 Hello

If you are like me and love fruit and vegetables, but a cannot afford, them fresh, then buying frozen is just if not better for you because they are frozen at source. 

Miriam

How to save money

 Hello

How often do you look through your bank statements and see a subscription, that you don't need any more?

Now is the time, to do just that, go through your bank statements, and highlight any subscriptions, that you have that you no longer need or use, and get rid of them.

With broad band and any other services that are similar, could you get a cheaper deal, why not give it a try?

If you are not well enough to do it, why not ask a trusting person to do it for you.

Miriam

How to improve your mental health

 Hello

The following are ways to  improve your mental health.

Be in nature, I don' t know about you, but nature does me so much good. Having a bird house in the garden, which is regularly topped up, and watch wildlife come and go, is such a tonic, it gives me so much pleasure, and does not take much work at all.

A more painful way is to have an ice bath, but I suggest you run it past the doctor before doing it, and the same with cold showers.

I hope this helps.

Miriam

Never eat ultra processed food

 Hello

Everyone knows, the damage ultra processed food does to your body, but people still eat it, because it cheap, why not ditch them, and go to Aldi or Lidl and get fresh food there, its much cheaper.

I am aware that many people who have ME, cannot go shopping, maybe your carer a friend or a neighbour can do some shopping for you.

As the saying goes, never eat anything, that has a name on it, where you don't know what it is.

Miriam

The Big Give is Here!

 

Thanks to the ongoing support of our amazing members like you, we’ve been able to support thousands of people living with ME and accelerate ground-breaking research to unlock answers and create hope. Our Big Give Christmas Challenge is back again – and with your help we can reach our target of £135,000 to continue our work to improve the lives of everyone affected by ME. For one week only, between 2nd and 9th December any gift you make will be doubled and have twice the impact. Donate Now

This year, all money raised will help us to: Improve the lives of adults and children affected by ME through our information, support, advocacy and healthcare services. Accelerate understanding of ME by building on the initial results of our DecodeME study, delivering more genetic research studies with Edinburgh University and supporting the next generation of ME researchers through our Future Leaders Programme. With your support, we’re driving real change, delivering hope, and making a lasting impact for people with ME, including people like Hattie* & Mia*.  Hattie's daughter Mia has ME, and their family were helped by our Information & Support service: “Please consider donating to Action for ME. When your child suddenly becomes seriously ill, it can feel like the world has fallen away beneath you. Action for ME are the people who step into that gap.”   Hattie Thank you so much, we couldn’t do this without you. Warmest wishes, Sonya Chowdhury, Chief Executive - Action for ME P.S. We are extremely grateful for any support you can give this year, we know that times are tough for many.  *names have been changed

Donate Now

Follow us for campaign updates

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Its back, double them up.

 

We are less than 2 weeks away from The Big Give Christmas Challenge – can you help us raise £135,000 to improve lives and accelerate understanding for anyone affected by ME?

Donate online between 2^nd and 9^th December to see your gift DOUBLED.

Last year, the money raised during our campaign helped us to:

·    Respond to over 1,100 requests for information and support from adults and children with ME. 91% had increased understanding of their rights and options following contact with us.

·    Continue to support younger researchers in the ME field through our Future Leaders Network, and build on the initial results of our DecodeME study through our Genetics Centre of Excellence research partnership with Edinburgh University.

·    Provided 215 bursaries to people on low incomes, helping them to access specialist healthcare including Doctors and Physiotherapists.

·    Launch an Essay Competition for Medical Students across the UK, helping ensure the next generation of Doctors understand ME and can better support their patients with ME.

We’ll be announcing the winners of our essay competition during the Big Give campaign week. Follow us on social media (links below) to see how it improved understanding of ME for those students who took part.

With your help, this year we can reach our target and continue our work to improve lives and accelerate understanding – now and in the future.

For now, save the date and we will contact you with more information about our Big Give Christmas Challenge soon, or keep an eye on our social media channels for more updates.

Best wishes from the Action for ME team.