Too ill to treat?

A former nurse shares her experiences campaigning for better care in Northern Ireland

Today’s guest post is from Rebecca Logan. Formerly a nurse in Northern Ireland, Rebecca developed ME as a result of a Covid infection in 2020. Today, she volunteers with Hope 4 ME & Fibro NI, campaigning for better care.

Prior to contracting Covid-19, I knew that healthcare in the UK was under significant pressure. As a medical practitioner myself, I thought that those working in healthcare were mostly understanding, empathetic and equipped to help their patients. Yet, almost five years from my initial Covid infection, my thoughts have changed drastically. Like many others with ME – including ME induced by Covid – I have experienced a lack of understanding, interest and care, which led me to my involvement in campaigning for better care for patients in Northern Ireland.

Developing Covid and Long Covid

I contracted Covid in early April 2020, while working on the frontline of the pandemic as a nurse in the NHS. Since then, I have been unable to return to the job that I loved for over 20 years. I was young, fit and healthy, and also working as a fitness instructor. After six months of struggling to work out what was wrong with me, I contacted my GP only to be told over the phone that I was depressed, anxious and that I needed to get on with my life. I thought I was going mad. How could they not believe me? I was able to see a medical consultant that I had previously worked with, who thought I had post-viral fatigue and referred me to a variety of specialities. All tests and examinations came back “normal”.

In this early stage, the health professionals I saw were mostly sympathetic towards me. Covid was still very much in the forefront of their minds and there was an acknowledgement that some people weren’t recovering. Yet something shifted in 2021. Around this time, I started speaking out on local radio and TV about how my life had been impacted. As a nurse, I was frustrated at how it appeared that people were starting to downplay the potential for long-term health implications from Covid. People with Long Covid in Northern Ireland started contacting me on social media about their experiences, and how they were desperate for help and understanding.

I started an online support group for those in Northern Ireland suffering from Long Covid. It was through these meetings that I met Joan McParland MBE, the founder of the charity Hope 4 ME & Fibro NI. When Joan heard my story, along with many others, she couldn’t help but recognise how similar it was to hers. Joan had contracted a virus over 26 years ago and developed ME, being bed-bound for long periods of time due to the severity of her symptoms. It was no surprise for her to see Covid resulting in vast numbers with similar symptoms.

Learning about ME

As a nurse, I am ashamed to say that I knew very little about ME, nor had I been taught about it during my training. After speaking to Joan, my symptoms began to make sense. I was suffering from post-exertional malaise (PEM) – a worsening of symptoms after exertion. Despite being one of the defining symptoms of ME, with potential to cause irreversible damage, since I had been sick it had never been mentioned to me by any healthcare professional. I am convinced that if I had been told about PEM in the early months following infection, and warned that exceeding my body’s energy limits would risk deterioration, I wouldn’t be in the position I am today.

Along with others in her charity, Joan had been campaigning for years for better ME services and education in healthcare. I couldn’t believe that there were so many people so severely affected by ME with no specialist service. As a nurse I struggled to get my head around this. These people were severely ill. Some couldn’t sit upright, walk, bear light or noise. Yet they were being dismissed by the NHS, despite usually having been active and healthy prior to getting sick. Why would they not be believed? Why weren’t they receiving help?

My heart sank for those of us with Long Covid. This type of illness was not new, yet nothing had been done to address it. The more I connected with Joan and her charity, the more angry I was that a charity, run by patients who were very unwell, was the only entity providing me with education, support and advice. Meanwhile, healthcare providers were telling me there was nothing wrong with me.

Too ill to treat

In January 2022 I was offered, and took, the opportunity to go to Germany to receive HELP apheresis therapy, a treatment which many Long Covid sufferers were trialling but which is not available in the UK. While it did not relieve my symptoms, it was the first time in almost two years that a doctor recognised the severity of my illness and was willing to try to help me.

Image credit: Rebecca Logan. Rebecca receiving HELP apheresis therapy in Germany.

Shortly after my return from Germany I was offered a virtual appointment with my local NHS Long Covid Clinic. After having to split my appointment into two sessions – since I couldn’t manage 90 minutes on Zoom – the practitioner concluded that I was “too ill to treat” and discharged me. I couldn’t believe it. A service that was supposed to offer me help was leaving me to fend for myself, with no follow-up. As a nurse, I had never discharged anyone from my care because they were too ill to treat.

Since then, I have had many more difficult experiences in healthcare. I have been told by a consultant neurologist that “there was nothing physically wrong” with me and that I could reverse my disability through positive thinking. On another occasion, a cardiologist who diagnosed me with postural orthostatic tachycardia syndrome (POTS) told me that, despite seeing an increase in patients presenting with the condition, they didn’t know much about it and that I’d have to travel to England at my own expense for a specialist opinion.

Devastated doesn’t cover how I have felt from these encounters, the implication that it is all in my head or that I am choosing to live like this. After sharing my experience with members of Hope 4 ME & Fibro NI, it was apparent that these were all common attitudes that many in the group had experienced.

Campaigning for better care

As time has gone on, I have become more and more frustrated with the attitude of healthcare professionals towards Long Covid and ME. The healthcare system is not equipped for these conditions. There is poor to no understanding of them, and seemingly no interest in wanting to learn more. Recent cases of neglect of severe ME patients have highlighted this even further.

Image credit: Rebecca Logan. Rebecca and Joan at the silent protest on World ME Day at Parliament Buildings, Stormont Estate, Belfast.

There needs to be widespread education on these conditions and, ideally, specialist services that can diagnose them early on and help prevent further damage. Education on ME and post viral-illnesses (such as Long Covid) needs to be included in university medical courses for healthcare workers, so that newly qualified professionals are aware that these illnesses exist, are real and know how to identify them.

Since developing Covid-induced ME, I have been involved in the education of GPs and physiotherapy students. Hope 4 ME & Fibro NI has helped to ensure that ME is included in modules for medical students at Queen’s University Belfast and at the University of Ulster. Together, we have spoken at ME conferences, and in modules for health professionals, to try to spread awareness and educate professionals.

If the healthcare system had believed and understood ME years ago, I don’t think we’d be in the position we are today with Long Covid. Patients should be listened to and believed from their very first contact with healthcare. We deserve the care and support that others get with long-term illnesses. Together with Hope 4 ME & Fibro NI, I will continue to campaign for better healthcare, research and treatment.