When I was first diagnosed with Chronic Fatigue Syndrome (CFS/ME), I found myself stepping into a world full of questions, confusion and frankly, a lot of misunderstandings. Many people, including healthcare professionals, don’t fully grasp what it’s like to live with this complex condition. And don’t even get me started on the ones that still don’t believe it’s a physical illness! So, in today’s post, I want to shine a spotlight on CFS/ME: what it is, the symptoms that come with it and where to find support.

Whether you’re newly diagnosed or have been living with this condition for years, my hope is that this post brings a bit of clarity and, most importantly, reminds you that you are not alone.

What Is CFS/ME?

CFS/ME stands for Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (or Encephalomyelopathy). It’s a debilitating chronic illness characterised by extreme, persistent fatigue that doesn’t improve with rest. Unlike ordinary tiredness, the fatigue experienced by those with CFS/ME is overwhelming and can significantly limit daily activities. But fatigue isn’t the only symptom, CFS/ME can impact nearly every system in the body, making it a complex and often misunderstood condition.

Common Symptoms of CFS/ME

CFS/ME symptoms can vary from person to person, but here are some of the most common:

• Unrelenting Fatigue: The hallmark of CFS/ME, this isn’t the usual tiredness you might feel after a long day. It’s an exhaustion that doesn’t improve with sleep and often worsens after physical or mental exertion, known as post-exertional malaise (PEM).

• Sleep Disturbances: Many people with CFS/ME experience unrefreshing sleep, insomnia, or difficulty staying asleep.

• Cognitive Impairment: Often called “brain fog,” this includes issues with concentration, memory and mental clarity.

• Muscle and Joint Pain: Pain without any obvious cause, which may come and go.

• Sensitivity: People with CFS/ME are often sensitive to light, sound, or even touch, which can make daily life incredibly challenging.

• Dizziness or Orthostatic Intolerance: Feeling lightheaded or faint when standing up, which can make simple activities feel impossible.

These symptoms can range from mild to severe and may fluctuate over time. It’s important to recognise that CFS/ME isn’t just about being tired, it’s a full-body experience that can affect every part of life.

Finding Support When Living with CFS/ME

Navigating life with CFS/ME can feel isolating, but there are ways to find support and resources to make things more manageable:

1. Connect with Others: One of the best things I did was reach out to others living with chronic illness. Online communities, local support groups, or even social media can be a lifeline. Knowing you’re not alone and sharing experiences with others who “get it” can make a world of difference.

2. Educate Yourself: Understanding your condition can be empowering. Research reputable sources and stay informed about new developments in CFS/ME research. It can also help you explain your illness to family, friends, or employers who may not fully understand. ME Association and Action for M.E. are two UK charities that have a wealth of information on the condition and would be a good place to start.

3. Talk to Your Employer: If you’re working, having an honest conversation with your employer about your needs can be beneficial. This might include discussing flexible work hours, remote working options, or necessary accommodations.

4. Focus on Self-Care and Pacing: Learning to pace your activities and rest before you’re exhausted is key to managing CFS/ME. Apps like Visible or Bearable can be helpful for tracking your energy levels and understanding your limits.

Final Thoughts

Living with CFS/ME is far from easy, and everyone’s journey is unique. What works for one person may not work for another, but finding what helps you manage your symptoms and build a life that feels sustainable is crucial. Remember, you’re not alone in this, and support is out there.

If you think CFS/ME might be affecting you, reach out to your GP or healthcare professional for advice. They can help guide you to the appropriate support.

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Disclaimer:

The content in this blog is based on my personal experience of living with chronic illness and is shared for informational purposes only. It is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always consult with your GP or healthcare professional before making any changes to your lifestyle, work routine, or health management. The tips and strategies shared here can be used alongside medical advice to support your well-being.