My outreach to people who have ME

Extra funding for ME and Long covid

noreply@blogger.com (Miriam) — Sat, 23 May 2026 11:25:06 +0000

We have been delighted to see the positive reaction to our BBC Lifeline Appeal and would like to thank everyone who has watched, shared and donated to the appeal.

We have reached many new audiences with the video as seen from the number of new donors and social media followers we’ve had since it launched. The feedback we have received has been overwhelmingly positive, such as the below from a new follower:

"I'm getting in touch because I was alerted to your BBC Lifeline Appeal via Instagram. I cannot tell you how supported, moved and seen I felt.

Feeling so seen has helped me feel empowered, less alone and stronger inside.  I have shared the Appeal video to relatives and friends as well as from my Instagram account.

Furthermore, the video helped me to feel more justified in asserting myself to speak out about the paucity of research and our treatment."

Our video is still available to watch on the BBC website here, and we will continue to take donations towards the campaign until the end of May.

Donate

All money raised during the appeal will go towards our work to improve the lives of anyone affected by ME - meeting their needs today through delivering information, support and healthcare, and changing the future by investing in research.

Have you heard the news about major funding for Sequence ME & Long Covid?

This week we were delighted to announce that this new research project has received £4.75m from the UK Government’s Office for Life Sciences (OLS), signalling a transformative step toward uncovering the biological roots of ME/CFS and Long Covid. This funding was secured by Action for ME and our research partners, with the money going directly to University of Edinburgh to start sequencing DNA samples. Read more here.

Creating these partnerships and securing this level of funding is only possible thanks to donations from people through appeals like our BBC Lifeline – if you are able to donate to or share the appeal video, you are helping us to create these major research milestones and moments of real hope for all those affected by ME.

Warmest wishes,

The Action for ME Team

You can now watch and share our BBC Lifeline Appeal!

noreply@blogger.com (Miriam) — Wed, 13 May 2026 13:23:02 +0000

You can now watch and share our BBC Lifeline Appeal!

Our appeal video was shown live on BBC One yesterday and is now available to watch and share on the BBC's website.

We're delighted to have Montell Douglas as our BBC Lifeline Presenter! Montell features in our 9-minute video, alongside our CEO, Sonya Chowdhury, and the real stories of Andrea, Alice and Isla, and Mark who share their experiences of living with ME. We'd like to say a huge thank you to Montell and our fantastic contributors for supporting our appeal and the wider ME community.

Watch and Share

“ME is a condition that affects so many people, yet is still widely misunderstood and often overlooked. Through this appeal, I hope we can shine a light on the reality of living with ME, including those who are severely affected." - Montell Douglas

3 things that will improve your health

noreply@blogger.com (Miriam) — Sun, 03 May 2026 13:28:00 +0000

Hello

This is from Just one thing program, 3 things that can improve your health.

Drinking 4 cups of tea a day. The properties in tea are full of antioxidants, and will boost your health and make you more relaxed.

Having 3 beetroot a day, will help with concentration.

Having a piece of dark chocolate a day, will boost your brain power. If you are not keen on the taste, you can start with 55% and build up.

I hope this helps.

Miriam

Action for ME on the BBC

noreply@blogger.com (Miriam) — Sat, 25 Apr 2026 16:16:00 +0000

Action for ME is coming to the BBC!

We are delighted to share with you that we have been selected for a BBC Lifeline Appeal – a unique opportunity to increase understanding of ME across national TV.

Since February we have been working with the BBC to develop a 9 minute video featuring the real-life stories of people with ME. These stories will be shown on BBC One on Sunday 26th April at 2:50pm. Keep an eye on our social media or BBC Lifeline webpage (links below) for further updates.

The video will be available to watch on the BBC website until Saturday 16 May and will feature the stories of three people living with ME in the UK.

Through this TV appeal, we hope to reach an audience unfamiliar with the realities of living with ME, combat stigma and raise vital funds towards our work.

All money raised during the appeal will go towards our work to improve the lives of anyone affected by ME – meeting their needs today through delivering information, support and healthcare, and changing the future by investing in research. Donations can be made from Monday 20^th April.

Watch & donate to help people like...

Isla, who developed ME after Covid. It has been hard for Isla and her family, but after accessing our Support Services, Isla's mum said, "It has been wonderful to be part of a community of people who truly understand what you are going through. Every person that I have interacted with at Action for ME has been very kind and empathetic.”

Andrea, who has been living with severe ME for 33 years and has accessed our Information & Support Services. “Having had contact with Action for ME I felt supported for the first time in 30-odd years. I was listened to and believed.”

Mark, who had mild ME for 30 years, then in 2016 it became moderate, then severe. Mark participated in our recent DecodeME genetic research project as, in his words, “This was a golden opportunity to help prove to the world that ME is NOT a psychological condition but a physical illness”.

Please save the date, tune in to BBC One on Sunday 26th April if you can, and thank you so much for your support.

Warmest wishes,

Sonya Chowdhury

Chief Executive, Action for ME

P.S. Please tell your friends and family too – the more people we can reach with this video, the more we can shine a light on the reality of ME.

Visit the BBC Lifeline Page

How to save your life, in one easy stroke

noreply@blogger.com (Miriam) — Sat, 11 Apr 2026 13:27:00 +0000

Hello

Do you have a smoke detector, do you test it once a month, by doing so, you will save your life, especially if you have a fire in your home.

Miriam

This is a matter of life and death.

noreply@blogger.com (Miriam) — Sat, 21 Mar 2026 12:33:00 +0000

Hello

From Morning Live, market places like Ebay, Amazon and Facebook are not regulated, so they can sell anything. One thing, you don't want to risk is a fire in your own home, just because something is cheap online.

If an electrical product does not have the letters EC on them, they are fake, and could burst into flames at any time. If you want electrical goods, go to Currys, Heelas, to name a couple.

Don't risk your life, over cheap good, that may be fake.

Miriam

Free tradesmen for you?

noreply@blogger.com (Miriam) — Mon, 16 Mar 2026 11:30:00 +0000

Hello

I got this from Morning Live.

If you want a tradesman free or expenses paid only, there is an organisation called the Mens Shed, it is a group of retired men, who are happy to do free work or expenses paid, in the UK.

Many times, when people retire they don't know what to do with their life, with this, they can continue to work very part time, giving them a purpose, and saving your money at the same time.

Miriam

How to cut your energy bills

noreply@blogger.com (Miriam) — Wed, 11 Mar 2026 10:52:00 +0000

Hello

I got this from watching Morning Live.

Use the eco settings on your devices, this saves energy each time you use it.

Turn your heating down a degree or so, and add more jumpers!

Don't overfill your kettle, as it uses a lot of energy to boil.

Don't over fill your fridge, and it takes up more energy because of lack of air space to circulate air.

Don't put things on standby.

I hope this helps.

Miriam

Sequence ME and Long Covid beginning.

noreply@blogger.com (Miriam) — Thu, 05 Mar 2026 11:52:00 +0000

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!

noreply@blogger.com (Miriam) — Sat, 28 Feb 2026 12:49:00 +0000

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

noreply@blogger.com (Miriam) — Sun, 08 Feb 2026 11:14:00 +0000

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

noreply@blogger.com (Miriam) — Sun, 01 Feb 2026 14:37:00 +0000

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

noreply@blogger.com (Miriam) — Wed, 21 Jan 2026 14:33:00 +0000

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!

noreply@blogger.com (Miriam) — Wed, 03 Dec 2025 10:08:00 +0000

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 2^nd and 9^th 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

Action for ME Unit 2.2 Streamline, 436 - 441 Paintworks, Bristol BS4 3AS. Registered charity in England and Wales no. 1036419. Registered in Scotland no. SC040452

Its back, double them up.

noreply@blogger.com (Miriam) — Wed, 26 Nov 2025 12:13:00 +0000

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.

The Key to Happiness: 5 Simple Steps to Launch Your Passion Business Today

noreply@blogger.com (Miriam) — Tue, 21 Oct 2025 16:22:00 +0000

We see successful business owners on TV every day, seemingly living their dream life. The secret they all share isn't luck—it's control. As This Morning highlighted on Friday, the key to lasting happiness and freedom often lies in running your own business.

If you've ever felt overwhelmed by the thought of starting, stop right now. It doesn't have to be complicated. You already have everything you need: your passion.

Here is a straightforward, five-step blueprint to turn what you love into a thriving business, starting today.

Step 1: Find Your Fire (The Passion Principle)

Don't start a business just to make money; start one that brings you joy.

The first and most important step is to find your passion and turn it into a business. When you are selling something you genuinely love and believe in, consistency becomes easy, and the work feels less like a chore and more like a mission. What do people ask you for advice about? What could you talk about for hours? That is your business idea.

Step 2: Create a Social Media Home Base

In the modern world, your social media page is your storefront. It’s where customers find you, connect with you, and ultimately buy from you.

Create your page: Choose a clear, engaging platform (Instagram, Facebook, TikTok) where your ideal customer spends their time.
Be Consistent: Posting once a month won't work. You must be consistent in promoting on it. Set a schedule (daily or every other day) and stick to it.
Use Social Media for YOUR Good: Don't just scroll—join social media groups and promote your business page there (where appropriate). Treat social media as a powerful, free marketing tool, not a distraction.

Step 3: Master the Art of Consistency

This is where 90% of people fail, but it's the simplest step.

Whether it's posting, reaching out to customers, or fulfilling orders, you must be consistent with what you do. Small, daily actions always beat huge, sporadic efforts. Consistency builds trust, improves your search ranking, and keeps your brand top-of-mind for potential customers.

Step 4: Start Small, Build Smart

The fear of doing too much often leads to doing nothing.

Resist the urge to launch ten products, three websites, and five social media channels at once. Instead, start off small and build up. Focus intensely on one product or service, master your marketing on one social channel, and then, once it's profitable, expand. This prevents overwhelm and guarantees a solid foundation.

Step 5: Commit for a Year (The Growth Window)

Your business needs time to breathe, find its audience, and grow organically.

You won't see great results in a month. In fact, most businesses take six months just to find their stride. Make a firm commitment to keep it at for at least a year, to make it grow. Patience isn't passive; it's a strategic decision that allows you to collect data, adapt, and eventually break through to consistent sales.

Ready to reclaim your happiness and financial control? Start by identifying your passion today, setting up your social home base, and committing to these simple, consistent actions.

Your successful business journey starts now.

Miriam

The Essential Guide to Winter Vitamins: D, Multis, and Omega-3

noreply@blogger.com (Miriam) — Sun, 19 Oct 2025 13:26:00 +0000

Vitamin D: Your Essential Winter Sunshine

The short days and low-angle sun of autumn and winter mean that most people in the UK simply cannot get enough Vitamin D from sunlight.

From October to April, experts recommend that every adult and child consider taking a daily Vitamin D supplement.

Why is Vitamin D so important?

Often called the "sunshine vitamin," Vitamin D plays a crucial role in regulating the amount of calcium and phosphate in the body. This is essential for:

Keeping bones, teeth, and muscles healthy.
Supporting a healthy immune system.

Multivitamins: Are They Worth It?

Multivitamins are popular, but they aren't a one-size-fits-all solution.

The general consensus is that not everyone needs a daily multivitamin. If you have a varied, balanced diet rich in fruits, vegetables, and whole grains, you are likely getting the vitamins and minerals you need.

When to Consider a Multivitamin:

A daily multivitamin could be beneficial if you:

Have a poor or restricted diet (e.g., you struggle to eat a wide variety of foods).
Are pregnant or planning a pregnancy (specific vitamins like Folic Acid are recommended).
Have a medical condition that affects nutrient absorption.

Always speak to a GP or pharmacist before starting a new supplement regimen.

Key Supplements for Plant-Based Diets

While most nutrients can be found easily in a well-planned vegan or vegetarian diet, two nutrients require special attention to avoid deficiencies: Vitamin $\text{B}_{12}$ and Omega-3.

Vitamin $\text{B}_{12}$

Why it's essential: $\text{B}_{12}$ is critical for making red blood cells and keeping the nervous system healthy.
The vegan challenge: It is found almost exclusively in animal products.
The solution: All vegans and many vegetarians should take a daily $\text{B}_{12}$ supplement or consume $\text{B}_{12}$ fortified foods (like some plant milks, breakfast cereals, and yeast extracts).

Omega-3 Fatty Acids

Why it's essential: Omega-3s (specifically EPA and DHA) are vital for brain, eye, and heart health.
The vegan challenge: The most potent sources (oily fish) are not part of a plant-based diet.
The solution: Vegans should focus on plant-based sources like flaxseeds, walnuts, and chia seeds (which contain ALA). However, to ensure adequate levels of the beneficial EPA and DHA, an algae-based Omega-3 supplement is often recommended.

Eat the Rainbow: The Fruits and Veggies That Are Your Immune System's Best Défense

noreply@blogger.com (Miriam) — Wed, 15 Oct 2025 13:16:00 +0000

Hello

A balanced diet rich in fruits and vegetables is key to a strong immune system, as they provide essential vitamins, minerals, and antioxidants. These nutrients help your body's "defender" cells fight infection and regulate immune response.

Here is a summary of key fruits and vegetables and the immune-boosting nutrients they provide:

Key Vitamins and Nutrients from Produce

Nutrient	Role in Immune System	Best Fruit & Vegetable Sources
Vitamin C	Increases the production of white blood cells (key to fighting infection) and acts as an antioxidant to protect cells from damage.	Citrus fruits (oranges, grapefruits, lemons), Red bell peppers, Strawberries, Kiwi, Broccoli, Kale, Tomatoes.
Beta-Carotene (converts to Vitamin A)	An anti-inflammatory vitamin that helps the body's antibodies respond to toxins and maintains the health of mucous membranes (a barrier against infection).	Sweet potatoes, Carrots, Butternut squash, Spinach, Kale, Apricots, Red bell peppers.
Vitamin E	A powerful antioxidant essential for regulating and supporting immune function.	Spinach, Broccoli, Nuts (almonds, sunflower seeds), Avocado.
Fibre (Prebiotics)	Supports gut health by feeding beneficial bacteria. A healthy gut microbiome is closely linked to a strong immune system.	All fruits and vegetables, especially leafy greens, root vegetables, and berries.
Antioxidants (Flavonoids, Polyphenols)	Protect cells from damage caused by free radicals, which can weaken the immune system.	Berries (blueberries, strawberries), Green tea, Citrus fruits, Pomegranates, Spinach.

Top Immune-Boosting Fruits and Vegetables

Red Bell Peppers: Surprisingly, they can contain significantly more Vitamin C than citrus fruits. They are also a great source of Beta-Carotene.
Citrus Fruits: Excellent sources of Vitamin C, which is not stored by the body, so daily intake is important.
Broccoli: Packed with vitamins A, C, and E, as well as fibre and various antioxidants. It's best eaten lightly cooked (steamed) or raw to retain the most nutrients.
Spinach: Rich in Vitamin C, Beta-Carotene, and antioxidants. Light cooking can make Vitamin A and other nutrients easier for your body to absorb.
Sweet Potatoes: Loaded with Beta-Carotene, which converts to Vitamin A, vital for immune function and fighting infections.
Garlic: Contains sulfur-containing compounds (like allicin) that have long been used for their immune-boosting and infection-fighting properties.
Ginger: Contains gingerol, which has natural anti-inflammatory and antioxidant properties that may help reduce a sore throat and inflammatory illnesses.

General Tips for Boosting Immunity with Produce

Eat the Rainbow: Aim for a wide variety of colours on your plate daily. Different colours indicate different phytochemicals and nutrients.
Meet Your Servings: Strive for 5 to 9 servings of fruits and vegetables daily. (A serving is generally 1 cup raw or $1/2$ cup cooked).
Hydration is Key: Water is essential for producing lymph, which carries immune cells throughout the body. Many fruits and vegetables, like cucumber and watermelon, also contribute to hydration.
Keep it Simple: Light cooking methods like steaming or microwaving are generally better than boiling for retaining vitamins. Eating them raw (when appropriate) is also excellent.

If you can't afford fresh, frozen is just as good.

I hope you find this article helpful, feel free to share it with others.

Miriam

Smart Food Pairings: The Power of Nutritional Synergy

noreply@blogger.com (Miriam) — Sat, 20 Sep 2025 15:13:00 +0000

Hello

Latest from Jamie Oliver series, it on Channel 4 if you want to watch it.

Vegetables

Have them fresh, tinned, frozen, pickled, tinned, all are equally nutritious.

Protein is really important, it helps to repair your body.
To save money, bulk it up with beans.

Olive oil is the healthiest oil to use.

Use herbs to add flavour to your meals.

I hope this helps you, feel free to share it with others, so it can help them.

Miriam

ME on Songs of Praise

noreply@blogger.com (Miriam) — Mon, 15 Sep 2025 09:19:00 +0000

Hello

Last night on Songs of Praise there was a lady who has ME, it was an interesting interview.

Click here to watch it.

Miriam

Thank you and what's next

noreply@blogger.com (Miriam) — Sun, 31 Aug 2025 13:55:00 +0000

As we move into the next phase of the study, we want to say a huge thank you to the incredible ME/CFS community who have made DecodeME possible.

DecodeME is not stopping, it’s transforming. While some of our team will be leaving, the data and its potential remain, and the research continues. 
We will: 

Continue analysing the DecodeME dataset and publish updated findings.
Encourage other bona fide researchers to use the world’s largest ME/CFS dataset.
Welcome the start of the PRIME project in October, which will build infrastructure and connections for research, as well as training people with ME and carers to get involved in directing research.
Seek funding for Sequence ME and Long Covid, which will use DecodeME data to analyse the entire genome.

Staying up to date
Going forwards, we will no longer be able to respond to emails or check our social media. We still aim to let you know of any key updates to the study, through our newsletter and on our website.

Your data
If you took part in DecodeME, your data will continue to be held securely by the University of Edinburgh. If you gave consent for wider use or recontact, that still applies and will remain available to bona fide researchers through our Data Access Process.

How to contact us

To update your details or consent, email: decodeme@ed.ac.uk Please detail in your message your name, date of birth, and what change you wish to make.
(this email will be checked periodically – we will be unable to answer other queries).
For general information or support, we recommend visiting Action for ME’s support page

Thank you
As we step into this next phase, we want to say how much this study has meant to us. We are proud of what we’ve achieved together, and incredibly grateful to every participant and supporter. DecodeME would not be where it is today without you – thank you. 

Miriam

Watch the DecodeME results webinar + visit our new website

noreply@blogger.com (Miriam) — Sat, 23 Aug 2025 16:21:00 +0000

After sharing our initial DNA results two weeks ago, we have been delighted by the community response, as well as the widespread media coverage.

As we approach the end of August, DecodeME's study team will change, and some staff will be leaving, but the project - and the data - will live on.

The new DecodeME website will now be the central place for our updates and to find our contact information. To ensure everything remains accessible long term, we’ve moved it across to the University of Edinburgh. The site contains all the same content, including results and contact details, and will continue to be updated as new findings are shared.

Visit the new DecodeME website

Thank you to the 2,500+ people who joined our genetic results webinar last week! We hugely appreciate your engagement. For those who couldn’t attend live, you can find the recording and transcript on our new website.

Watch the initial results webinar

As we move into this next phase of DecodeME, our data access will continue to be open for applications, and we encourage researchers to analyse and explore our rich dataset. We are also looking to build on DecodeME through new research projects, which you can support here: Donate via Action for ME.

Thank you for all your kind messages in response to our initial DNA results. Whilst we are unable to respond to them all, we are grateful for your continued support.

Warmest wishes,
The DecodeME Team

Miriam

Groundbreaking DecodeME results revealed

noreply@blogger.com (Miriam) — Tue, 12 Aug 2025 10:58:00 +0000

The long-awaited initial findings of the DecodeME project have been revealed, and as a valued supporter we are delighted to share them with you.

This is the largest ever genetic study of ME, involving over 26,000 participants – people who generously donated DNA samples and completed detailed questionnaires. It’s a study that has put lived experience at its heart, with people with ME shaping its design every step of the way.

Co-led by Action for ME and Professor Chris Ponting and his team at the University of Edinburgh (within the ME Genetics Centre of Excellence), DecodeME is a major milestone. The findings offer new insights into the biological basis of ME, helping to validate the reality of the illness, guide future research and, ultimately, pave the way for better diagnosis and treatments.

The main findings from the analysis are:

Your genes contribute to your chances of developing ME/CFS
People with an ME/CFS diagnosis have significant differences in their DNA compared to the general population.
Eight genetic signals have been identified. As DNA doesn't change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS
The signals discovered are involved in the immune and nervous systems, indicating immunological and neurological causes.
At least two of the signals relate to the body's response to infection.
Other signals point to the nervous system, one of which researchers previously found in people experiencing chronic pain, reinforcing neurological contributions to ME/CFS.
These signals align with how people with ME/CFS describe their illness.

Find out more about the results here.

We will be holding a webinar on Thursday 14th August, where we will explain further what has been found and answer your questions. Please click here to register for the webinar.

This moment is only possible because of long-term investment in ME research – and supporters like you who believe in making progress where it’s most needed.

We’ve come a long way, but there is still so much more to do. We remain committed to driving increased research and understanding into ME, and bringing more talented researchers into the field.

With warmest thanks for all that you make possible,

Sonya Chowdhury

Chief Executive, Action for ME

Decode ME results...

noreply@blogger.com (Miriam) — Mon, 04 Aug 2025 16:46:00 +0000

Hello

I have just received the following.

We are writing to let you know that the initial DNA results from the DecodeME study will be available in the next few days. We plan to send you an email with our findings on Wednesday 6th August around 7pm. We will also be announcing the results on our website at this time.

We're letting you know the timing in advance so you can pace yourself if needed.

Thank you for your continued support and we look forward to sharing more very soon.

Warmest wishes,
The DecodeME Team

Miriam

Give today, change tomorrow

noreply@blogger.com (Miriam) — Thu, 26 Jun 2025 09:35:00 +0000

Dear Miriam

Like you, we know that significant change is needed for people with ME, and it is needed now.

At Action for ME, we know that change doesn’t just happen – it has to be made. That’s why, this year we are running a Summer Appeal and hoping to raise £25,000 to fund vital change for people affected by ME.

With your help, we can achieve:

Changes to our scientific understanding of ME, through more high-quality research.
Changes to the help and support available to adults, children and their loved ones.
Changes in attitudes towards ME – including those of politicians, health and social care professionals and educators.

Donate or share this campaign between 20th - 30th June to bring much-needed change for people with ME.

Donate Now

Spread the word

Tell your family, friends, neighbours or anyone who wants to see change for people with ME. If you are online, share our social media posts using the buttons below and help us spread our message of change even further.

Change for Frances

Alongside funding new biomedical research and working to change attitudes, our work also creates positive change for people like Frances, who used our Doctor and Information & Support Services:

“ME threatened everything about me that made me, me - my body, my mind, my relationships and my career. Action for ME has been there throughout, supporting me to hold these pieces together and to find myself again, albeit in a very different way of living.”

All money raised will go towards our services and other projects, including research, to improve the lives of people affected by ME.

Thank you for your support,

Sonya Chowdhury, Chief Executive, Action for ME.

P.S. We know that costs are rising for everyone at the moment. We are so grateful for anything you can spare to help us create change for people affected by ME.

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My outreach to people who have ME

Extra funding for ME and Long covid

You can now watch and share our BBC Lifeline Appeal!

3 things that will improve your health

Action for ME on the BBC

How to save your life, in one easy stroke

This is a matter of life and death.

Free tradesmen for you?

How to cut your energy bills

Sequence ME and Long Covid beginning.

Frozen are better than fresh!

How to save money

How to improve your mental health

Never eat ultra processed food

The Big Give is Here!

Its back, double them up.

The Key to Happiness: 5 Simple Steps to Launch Your Passion Business Today

Step 1: Find Your Fire (The Passion Principle)

Step 2: Create a Social Media Home Base

Step 3: Master the Art of Consistency

Step 4: Start Small, Build Smart

Step 5: Commit for a Year (The Growth Window)

The Essential Guide to Winter Vitamins: D, Multis, and Omega-3

Vitamin D: Your Essential Winter Sunshine

Why is Vitamin D so important?

Multivitamins: Are They Worth It?

When to Consider a Multivitamin:

Key Supplements for Plant-Based Diets

Vitamin 12

Omega-3 Fatty Acids

Eat the Rainbow: The Fruits and Veggies That Are Your Immune System's Best Défense

Key Vitamins and Nutrients from Produce

Top Immune-Boosting Fruits and Vegetables

General Tips for Boosting Immunity with Produce

Smart Food Pairings: The Power of Nutritional Synergy

ME on Songs of Praise

Thank you and what's next

Watch the DecodeME results webinar + visit our new website

Groundbreaking DecodeME results revealed

Decode ME results...

Give today, change tomorrow

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