By summer this year the number of people with Myalgic Encephalomyelitis (ME) is expected to have at least doubled since the beginning of the pandemic due to the huge numbers of people developing ME from covid. So funding and support for people with ME, and money going towards ME research is more necessary than ever.
ME is one of the most underfunded illnesses proportionally its disease burden, compared with other illnesses. People with ME are sadly stigmatised, often being disbelieved and mistreated by health care and welfare professionals, and above all, they are still without any adequate strategies to manage their condition. Whilst this is changing, it is changing too slowly.
May is ME Awareness month, a month where we try to help raise the profile of ME and bring people’s attention to the help that we need. Sadly it feels like the majority of people who engage with the plight of people with ME, and with ME awareness month, are those who are already suffering with ME or who have family and friends who suffer – which is not the case with other major illnesses.
This year I would love to see more people without ME doing something to raise awareness or money for ME, and, in case you are struggling for ideas, here are just a few things you could do.
1. Donate money to an ME charity or trust
Starting nice and simple, something many people could do to help people with ME is to donate to a charity that helps people with ME or funds research into ME. Here are just a couple of charities that could benefit from the help:
- Action for ME -aid people who have ME and fund and campaign for research. Currently, play a big role in the Decode ME study.
- ME Action – an organisation that works globally with advocates, aiming for a world where people with ME are treated with compassion and care. Founders of the Millions Missing campaign.
- Open Medicine Foundation – A key organisation behind a lot of the research that happens into ME, aiming to drive more research towards complex chronic health conditions.
- ME Research UK – A UK based charity that funds research into ME.
- Tea Party For ME – by Anna Redshaw, is a fundraising day where people worldwide with ME hold tea parties. On this page, she links to many charities and provides information about each charity.
Donating money, whilst a very quick thing to do, is one of the best ways to help fund new research into ME, and new research is something we desperately need. It also helps to fund important campaigns such as the campaign to change the NICE guidelines, which was only successful due to the work of many dedicated activists.
2. Watch Unrest with friends or hold a screening
Unrest is a documentary made by Jen Brea. The documentary follows a few different people living with severe ME and gives you an understanding of what it is like living with severe ME, from the symptoms themselves to working with health care professionals, and the impact ME has on interpersonal relationships. Unrest focuses on the people with ME who are least visible, those who are completely bedbound, often tube fed and unable to tolerate light. It shows just how severe ME can be and provides quite the contrast from the standard picture of a sleeping office worker that accompanies most news articles about ME. Watching and sharing Unrest is a great way to help educate yourself and others about ME.
3. Follow, support and share the work from people with ME and ME charities
There are so many talented people with ME writing or creating art about their experiences with ME, setting up small scale charities to help fellow ME sufferers and dedicating their already limited energy to educating people about ME. Consuming the things they make, listening to and sharing their stories are all ways of raising the understanding and profile of this illness. It helps to break the stigma around ME, spread ME awareness and helps to break the isolation that many with ME feel.
4. Use and educate your social networks
Something I would love to see more of is people using their networks to spread awareness. Are you a teacher? Great, then hold an assembly and educate students about ME, have a non-school uniform day and raise money for your chosen charity that way. Are you a doctor? Amazing, then hand out information leaflets and emphasise the importance of understanding ME to your fellow doctors. Work in an office? Bring in some cakes and sell them for a donation price to raise money for people with ME. I would love to see some of the standard fundraising techniques we see for many other charities start happening for people with ME, maybe even do a sponsored skydive for ME if you are wild enough to want to. I’ll gladly share any sponsored daredevilry on my social media!!
Thank you
If you are reading my blog, and following my social media it means that you are already trying to learn about ME, and supporting someone with ME. I really really appreciate it and thank you for helping us. I wouldn’t wish ME on anyone – well maybe on a couple of people – but it is an awful and hopeless illness to have, any support we get, and any new research that is done gives many of us the hope to keep on pushing through the never-ending grind of being sick.
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