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World ME Day

This year marks 10 years since I was diagnosed with M.E. Over that time I’ve experienced significant personal development and grown confident in my disabled identity, but I wish I could say that there had been a similarly positive trajectory in M.E. research breakthroughs and support. Progress has been made, and is greatly appreciated, but there is still such a long way to go.

Pippa is a white woman. She is pictured from the shoulders up, laid on a bed. She is wearing a pink hoodie, headphones, an eye mask pushed up ontpo her forehead and her dark brown hair is in a bobble on top of her head. She is smiling at the camera.

M.E. and similar conditions are not always well-understood in the broader disability community, so for World M.E. Day this year, here are 5 things you may not know about this condition, and how you can be an ally…

1) M.E. is more than ‘chronic fatigue’

In the past, the media has presented M.E. primarily as an illness where those affected are ‘tired all the time’. Fatigue is a key symptom of the condition, but far from the only one. M.E. affects multiple different systems in the body, leading to chronic pain, noise and light sensitivity, cognitive dysfunction, orthostatic intolerance (such as dizziness and fainting), migraine and visual disruption, stomach and intestinal issues and so much more. To the untrained eye, many of these symptoms are not immediately visible to somebody without lived experience of chronic illness.

2) Managing energy impairment is an access need

One of the most significant features of M.E. is the body’s difficulties in producing energy, and what happens when that energy runs out. Each of us has a ‘baseline’ level of energy per day, and if we over-exert ourselves, we experience post-exertional malaise (often known as ‘payback’) over the following days. When this happens, our symptoms become even more heightened and are at their most debilitating, and from experience I can tell you it’s an incredibly unpleasant thing.

Pippa is a white woman, with long, dark brown hair. She wears a black t-shirt and black trousers with a white leaf pattern. She is sat crossed legged, holding a white sign which reads - it takes me twice as much energy to achieve half as much as my peers.

This is why people with M.E. must pace themselves carefully, and often plan in advance to ensure they can safely do what they want or need to do. Managing energy impairment is therefore an access need – people should be accommodated wherever possible to help them pace themselves and manage their condition. In practice this can include making sure people have a quiet place to rest during social occasions, flexible and reduced hours of work or study, or access to mobility aids inside and outside the house to reduce physical exertion.


3) Stigma and misinformation is still prominent

You will struggle to find a person with M.E. who hasn’t been told that they’re ‘lazy’ or ‘not trying hard enough’ at some point in their lives. In the past, the condition was falsely presented as a mental illness and linked with hysteria, with people told that the disabling symptoms they were experiencing were ‘all in their heads’.

Thankfully the emergence of biomedical research and improved public education are slowly beginning to change these attitudes in the wider world, but those affected must still carry the heavy weight of stigma. To this day, many of us who share our stories online are branded as fakers or attention seekers. You can help by calling out online hostility when you see it, and by elevating the voices of individuals and organisations who are working to debunk these myths for good.

4) There are better ways to be an ally than trying to ‘heal’ us

M.E. is a highly indidivualised condition and no two people experience it in exactly the same way. Although there is no targeted treatment or cure yet, people often seek a range of remedies and solutions to help them cope with their symptoms. Anything that can help is a blessing, but it’s important to remember that something that provides relief for one person won’t necessarily have the same impact on another. In fact, sometimes the things that enable one person to experience an improvement in their condition can be actively detrimental to somebody else.

Piippa, a white woman is laid on a light brown sofa. She is alseep and wearing an eye mask. She has a grey, fluffy top on and is covered with a cream blanket.

This is why it’s important not to offer your opinion on potential treatment or symptom management options unless somebody explicitly asks for it. Many people with M.E. and similar conditions receive reams of unsolicited advice as they go about their life, and it can be difficult to explain why this is not appropriate – especially on a brain-foggy day! Instead of trying to ‘fix’ a disease that at present remains unfixable, instead affirm the individual’s experiences and consider asking what you can do to help them or improve their day.

5) The most severely affected are often the least visible

M.E. affects people on a sliding scale of severity. Even the mildest form of M.E. is a severe and debilitating condition, but we must acknowledge the huge differences in quality of life between those at the milder end of the scale and those with Severe and Very Severe M.E. These are the stories we don’t hear about as often as we should, usually because those affected are so profoundly unwell that it takes everything they have just to get through the day. There are thousands of people in the UK alone, of all ages and backgrounds, who have not been well enough to leave their house, bedroom, or even their beds for years on end. Many lose the ability to communicate and even being lightly touched is too painful to tolerate.

Hospitalisation can lead to people in this population experiencing further decline and many are denied appropriate treatment, due to immense knowledge gaps and lack of targeted clinical guidance in the medical profession. The lives of people with Severe and Very Severe M.E. should never be far from any of our minds, so ensure you sign relevant petitions and advocate for change when these stories do appear on social media.


This World ME Day, please take a moment to think about the estimated 55 million people living with M.E. around the world. It can be a very lonely condition to live with and even the smallest gestures of support can mean so much. To find out more about the condition and keep updated with ways you can help, please visit Action For M.E. or #MEAction UK. Thanks for reading!


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