Why Calling ME a Rare Disease Frustrates Me

Why Calling ME a Rare Disease Frustrates Me

I have been following the coverage of Beth Dobbin speaking about her life with ME, and I am grateful that she has chosen to share something so difficult and personal.

Whenever I see ME being taken seriously in the media, I feel a little hopeful. I want that coverage. I want more people to understand what this illness can do, and I appreciate the effort involved in explaining it while living with it.

But one headline frustrated me.

The New York Post Sports headline, also republished on AOL, described her as a former Olympic star now spending 22 hours a day in bed with a “rare disease”.

I kept coming back to that word. Rare.

I live with ME and fibromyalgia. I know how unfamiliar ME can seem to people who have never had a reason to learn about it. But I struggle with seeing a lack of awareness presented as though very few people have the illness.

When I read that headline, I felt grateful for the attention and disappointed by the wording at the same time.

Why That Word Matters to Me

I am not expecting every journalist to understand every detail of myalgic encephalomyelitis. I am still learning about the condition myself, despite living with it.

I do expect the basic description to be accurate.

The CDC estimates that up to 3.3 million people in the United States have ME/CFS. When I look at that figure for one country alone, I cannot reconcile it with the impression created by calling ME rare.

To me, that wording makes the illness sound distant. Something unusual that happens to a handful of unfortunate people, rather than an illness affecting millions of lives.

I think about everyone living quietly with it, including those too unwell to explain themselves publicly. I think about how easily their absence from everyday life can become an absence from public understanding.

I cannot help wondering whether ME would seem quite so unfamiliar if those experiences had been listened to properly for longer.

I Was Frightened of My Diagnosis Before I Had It

When it became clear that my diagnosis might be ME, I panicked.

I really did not want it to be that.

At the time, I did not personally know anyone with ME, yet I already knew about the stigma. I knew it was an illness that could be dismissed. I knew there was no cure, and I was frightened by what that might mean for my future.

I wanted an explanation for what was happening to me. But I also wanted that explanation to come with help, understanding and some sense of what could be done.

Instead, I worried about having a diagnosis that might leave me having to explain why I was ill in the first place.

Looking back, I find that upsetting. Before I had even begun to understand my own ME, I was already frightened of other people’s attitudes towards it.

That fear did not appear from nowhere.

I Find the History of Disbelief Difficult to Separate From My Own Illness

I find it painful to read accounts of people with ME being dismissed, disbelieved or made to feel responsible for symptoms they cannot control.

I also find it significant that NICE explicitly acknowledges prejudice, disbelief and stigma in its ME/CFS guidance. Seeing those experiences recognised in clinical guidance matters to me. It confirms that the problem needs to be addressed within healthcare itself.

As a woman living with ME and fibromyalgia, I find myself thinking about whose symptoms are taken seriously. The CDC reports that ME affects women more often than men. I cannot reduce the history of this illness to one explanation, but I do question the assumptions made about women describing pain, exhaustion and changes in their bodies.

I want to be able to describe what is happening without worrying that the description itself will be treated as an exaggeration.

I have written before about why I call my illness ME and why the language around chronic fatigue matters to me. That concern comes from living with the gap between what a name suggests and what my illness actually involves.

My Experience of Specialist ME Support Has Made a Difference

Fortunately, my experience has also included professionals who understand ME and take it seriously.

When I found out that my local NHS trust had an ME clinic, with a GP who had a specialist interest in ME and long Covid, I felt much more at ease.

I had been so worried about the diagnosis that knowing there was a team familiar with the illness changed how I felt about facing it.

Over the years, I have received support from occupational therapy, and the team has been there when I have needed them. I am currently taking part in a weekly conference call with the GP, an occupational therapist and other people living with ME.

Those calls cover the many different aspects of a complicated illness. I appreciate having information explained by people who understand that complexity, alongside others who are living with it.

I value being able to listen and learn without feeling that the starting point is a debate about whether ME is real.

That support has not taken my illness away. It has made a difference to how supported I feel while living with it.

I am grateful for it, but I also feel uncomfortable describing myself as lucky to have access to knowledgeable care. I wish I could assume that everyone diagnosed with ME would receive that same understanding.

I Know the Difference Between Support and a Cure

When I am frustrated, it is easy to say there is nothing for ME. What I mean is that there is no cure, and I wish there were treatments that could reliably change the course of the illness.

I do not want that frustration to erase the value of symptom management, occupational therapy or the support I have received.

I understand from the NICE guidance that diagnosis remains clinical, based on a particular pattern of symptoms, assessment and investigations to check for other explanations. I also understand that symptoms can be managed even though there is currently no cure.

For me, those distinctions matter.

I can appreciate the people helping me now while still wanting much more from research and healthcare. Gratitude for my local team does not remove my frustration about how much remains unanswered.

I have also written about the emotional and physical exhaustion I experience when managing medical appointments with chronic illness. Having support matters, but I still have to live with the effort involved in managing my health.

Why the Research Gives Me Hope

I took part in the DecodeME study myself, so seeing the initial results released in August 2025 felt personal. It gave me hope to know I had contributed to research into an illness that affects so much of my life.

In the research team’s explanation of its findings, I read about eight genetic signals associated with ME/CFS. I took hope from the possibility that these findings could give researchers clearer directions to investigate.

I do need to be careful about what that means. The study did not produce a diagnostic test that I can now request from my GP, and it did not provide a cure.

But I still see it as meaningful progress.

I want research that helps explain what is happening biologically. I want that understanding to lead to better diagnosis and effective treatments. I want the scale of the research effort to reflect the scale of the lives affected.

At the same time, I find it painful that scientific progress can feel like another opportunity for people with ME to be believed. I was ill before those results were announced. My need for care did not begin when researchers identified genetic associations.

I can feel hopeful about the findings and sad about that reality at the same time.

My ME Began After Glandular Fever

My own ME began after glandular fever, which is one reason the conversations around long Covid feel so relevant to me.

I recognise the fear in accounts of an infection followed by an illness that does not resolve as expected. I know what it is like for life to change after being unwell and for the consequences to last far beyond the original infection.

I have felt encouraged by the increased attention to illnesses that can follow infections. I hope the research and awareness surrounding long Covid will also improve understanding of ME.

I would not describe long Covid and ME as interchangeable, though. My understanding from research involving the RECOVER study is that some people develop ME/CFS after Covid and meet its diagnostic criteria. That overlap matters, without meaning that every person with long Covid has ME.

I want to make that distinction because I am asking for accuracy in how my illness is discussed. I need to be careful with my own wording too.

Why Accounts of Severe ME Frighten Me

I find coverage of severe ME particularly difficult to read.

I want to know what is happening. I want people’s experiences to be heard. But I cannot always keep an emotional distance from stories about an illness I also live with.

Maeve Boothby O’Neill’s death is one that I find deeply upsetting.

In the coroner’s report published in October 2024, I read that Maeve died in 2021 after hospital admissions had been unable to prevent malnutrition arising from her severe ME. The report raised concerns about specialist provision, medical training and guidance for caring for people with severe ME.

I do not want to simplify the circumstances of her death or suggest that no attempts were made to help her. The report describes attempts that failed, alongside serious gaps in provision.

I find that frightening enough.

I think about needing help with something as fundamental as nutrition and finding that the available care cannot meet those needs. I think about her family. I think about the fear involved in watching someone deteriorate while trying to obtain appropriate help.

I also notice my own anxiety rising as I write about it. Reading these accounts makes my diagnosis feel more real in a way I sometimes find difficult to sit with.

Why I Am Grateful to Beth Dobbin

I am grateful to Beth Dobbin for speaking publicly, especially knowing from her account that the effort of an interview could affect her health.

I do not need to have lived her life to recognise the importance of what she is sharing. Her experience has brought ME into conversations that might otherwise never have happened.

I hope that attention reaches people who have misunderstood the illness. I hope it reaches someone who has dismissed a relative, doubted a colleague or assumed that being unable to do something means not wanting to do it.

I also feel sad that an Olympic background may make illness easier for some people to believe.

I want the person without a public platform to receive the same consideration. I want an ordinary account of lost health and independence to carry weight without an impressive sporting history behind it.

I appreciate Beth using the attention available to her. I wish that attention were not so necessary.

What I Want From ME Awareness

I want to see more coverage of ME, including accounts that are difficult to read. I want the seriousness of severe ME to be understood, alongside the different ways the illness affects everyday life.

But I also want journalists to check the language they use. I want research developments explained without being turned into promises of tests or treatments that are not yet available.

I want better funded research, knowledgeable care and support that does not depend so heavily on where someone lives.

My own experience has shown me the difference an informed team can make. It has also left me aware of how frightened I was before I knew that support existed.

I am writing this as someone living with ME and fibromyalgia, trying to make sense of the coverage while managing my own feelings about the illness. I can be grateful for awareness and still ask for it to be more accurate.

When I see ME described as rare, I think about the millions of people whose lives are affected. I think about how long some have waited to be heard.

I want the next headline to help more people understand why.

About me

I'm a married mum of four children, and we are special guardians and kinship carers to one of them. Our Special Guardianship journey began in 2012, and it has taught me more about family, resilience, childhood trauma and myself than I could ever have imagined.

I live with several chronic illnesses and disabilities, including ME/CFS, fibromyalgia, spinal stenosis and chronic pain, which bring their own challenges to everyday family life.

Writing has become a way for me to share our experiences, reflect on the difficult moments and hopefully help others feel less alone. Through Cracked Nails & Split Ends, I write openly about kinship care, Special Guardianship, parenting, chronic illness and the realities of family life. I don't pretend to have all the answers, but I believe there is value in sharing what life is really like, including the parts that aren't always easy to talk about.