For World ME Day, I thought I’d do something a little different and look outwardly this year. If you’re fortunate enough not to have lived experience of this condition but want to show your support, you may be wondering where to start. This quick post is one for you, sharing practical ways to make a difference. So, without further ado, here are ten actionable ways to support people with M.E. in 2024…

1. Check in on a friend or loved one with M.E. and ask them what you can do to help. Not if they’re okay or if they need any help, because many of us are hard-wired to turn down the offer and say that we’re okay… even when we’re very-much not. By asking what you can do, you’re making it much easier for somebody to ask for what they need. There may be practical ways you can assist them, for example dropping off groceries or posting a parcel, or they may simply fancy a quiet cuppa and a chat in your company. Sometimes the smallest things can be the hardest to ask for, and yet they can make all the difference.

2. Continue taking C*vid precautions wherever possible. The spread is still at large, and becoming ill with the virus can have catastrophic consequences for people with M.E. and similar conditions. Consider distancing, wearing a mask in crowds or on public transport (as a minimum) and please, please continue testing and avoid seeing others if you have symptoms or you’re testing positive. Many people with chronic illnesses are still having to shield and distance due to a lack of compassion and understanding from others, but even this doesn’t take away the risk of transmission.

3. If you work in academia, spread the word that the DecodeME data set (from the world’s largest M.E. study) is now open for access applications. The more high-quality researchers we can recruit to conduct biomedical research into the condition, the closer we can get to finding answers.

4. Keep informed about the key issues impacting the M.E. community by following relevant charities and advocacy groups, especially those with/on behalf of people with Severe and Very Severe M.E. As a starting point, consider ME Action UK and The Chronic Collaboration, along with local charities and patient groups in your area. Disability charities and advocacy groups often share informative posts and resources to broaden your general understanding of disability as a whole too.

5. If you’re an employer, ensure your disability equality training includes energy limiting conditions. These conditions affect around one in three of the disability community, mounting up to a sizeable population, but the unique challenges and access barriers faced by these individuals often go unrecognised. If this area is unfamiliar to you, Astriid Consulting is run by leading subject experts and provides online and in-person training in key areas, such as flexible working and inclusive recruitment.

6. Oppose the unacceptable proposed changes to social support that mean that many disabled people, especially those with stigmatised conditions like M.E., could lose the income they need to survive and may even be forced into work programmes that make them sicker. Write to your MP and ask them to oppose this plan now, while it’s in the consultation stage. You can also sign Scope’s petition here.

7. Challenge stigma and everyday ableism when you see it, in-person or online. Disabled and chronically ill people often have to use their limited energy educating, problem-solving, and dealing with hostility – issues that could be made much easier to carry if more non-disabled allies were willing to help. Elevate the voices of people with lived experience and advocate for people who may not be well enough to advocate for themselves.

8. Support the creation of an NHS protocol specifically designed for people with Severe M.E. who have complex needs. The lack of information in this area means many people are being mistreated when admitted to hospital and suffering unacceptable harm. Sign this open letter addressed to the Secretary of State for Health and Social Care, and write to your MP to make them aware of the issue. 

9. Keep inviting and including your friends and loved ones with M.E. in plans, even when they often can’t join in due to their health. Think about how you might spend quality time together or show you’re thinking of them in a way that accommodates their symptoms. If you’re unsure, don’t be afraid to ask and take your lead from them – they know their access needs better than anybody. There are plenty of tips for maintaining strong friendships and finding accessible ways to socialise in my book, How To Do Life With A Chronic Illness.

10. If you work in media or storytelling, it’s time to debunk the outdated narrative that a person’s positivity or determination dictates whether or not they experience improvement or recovery in their long-term illness. This belief oppresses hundreds of thousands of people and continues to place fault and blame on individuals, even though there is very little conscious control they have over the trajectory of their condition. Consult with people with lived experience – there are SO many richer and more interesting narratives in this community to explore instead.

And, if you can, consider making a regular or one-off donation to national charities and grassroots organisations that continue to advocate for this community. There’s also Blue Sunday coming up on 19th May 2024, a gorgeous opportunity to enjoy some tea and cake for a good cause, masterminded by my brilliant friend Anna. More on that one here!

When you live with a condition like M.E., it sometimes feels as though nothing ever changes. However, we are starting to see attitudes shift and great work happening, and it really feels as though we’re on the cusp of real change… but nothing will ever truly evolve unless there are people outside of the community willing to stand with us too. If you’re one of those people and you’ve read this far or actioned any of the suggestions above, during World ME Day or at any other point, thank you. It means so much to so many.

You can learn more about ME/CFS here. If you’re a person with M.E. and struggling today, The ME Connect Helpline by the ME Association can provide support and empathy over the phone from trained volunteers, and Action For ME provides a range of free services for individuals. Take good care of yourself, today and everyday.

~

If you’re new here, hello! My name is Pippa and I’m a disabled writer, speaker, and communication consultant based in Yorkshire. Find out more about me here, and shop my books and eBooks here!